Dear Readers,
I know this isn't a good time of year to ask anyone to do anything, but I'm up against a deadline myself. I've contracted with a medical journal for an article on improving informed consent among parents whose children are born in the ethical gray area below 26 weeks gestation. It needs to be in Jan 1, and I still haven't done any Christmas cards! Nevertheless...
I would be interested in suggestions any of you have about ways to improve the informed consent process especially prior to delivery.
My own thoughts are that we need to:
1) start in the media (no more unchallenged "miracle baby" stories)
2) extend this to high school biology and "family life" classes, with comprehensive coverage about what is and isn't possible, biologically, at various gestational ages
3) mandate counseling for fertility treatment couples about the risks they are taking (this counseling would not be given by anyone with a financial stake in promoting fertility treatment)
4) require handouts from OBs/ child birth instructors giving comprehensive information and options for each gestational age along the lines of "If your baby is born at X weeks, here is what s/he will be like, here are the risks and probable outcomes... here are your options..."
5) allow prenatal advance directives that give each couple a chance to discuss and think about the issues at home, on their own (away from the pressures of high-tech medicine)
6) promote a frank admission by the medical community about the "experimental," highly painful, and damaging nature of treatment of babies below 26 weeks
7) promote a frank discussion of the economic, marital, and health consequences for the family following the survival of an extremely preterm child
8) promote a frank admission about the resuscitation and treatment policies of each hospital -- a sort of "truth in advertising" --that would let parents "vote with their feet" and choose a hospital whose policies are more in line with their wishes
I would be interested in suggestions any of you have about ways to improve the informed consent process especially prior to delivery.
My own thoughts are that we need to:
1) start in the media (no more unchallenged "miracle baby" stories)
2) extend this to high school biology and "family life" classes, with comprehensive coverage about what is and isn't possible, biologically, at various gestational ages
3) mandate counseling for fertility treatment couples about the risks they are taking (this counseling would not be given by anyone with a financial stake in promoting fertility treatment)
4) require handouts from OBs/ child birth instructors giving comprehensive information and options for each gestational age along the lines of "If your baby is born at X weeks, here is what s/he will be like, here are the risks and probable outcomes... here are your options..."
5) allow prenatal advance directives that give each couple a chance to discuss and think about the issues at home, on their own (away from the pressures of high-tech medicine)
6) promote a frank admission by the medical community about the "experimental," highly painful, and damaging nature of treatment of babies below 26 weeks
7) promote a frank discussion of the economic, marital, and health consequences for the family following the survival of an extremely preterm child
8) promote a frank admission about the resuscitation and treatment policies of each hospital -- a sort of "truth in advertising" --that would let parents "vote with their feet" and choose a hospital whose policies are more in line with their wishes
9) perhaps offer a physically separate facility for delivery and palliative care for parents who do not wish resuscitation so that families don't have to confront NICU technology and the attitudes and imperatives for its use that accompany it
And in the NICU:
We need to promote parental participation in rounds and charting, taping of important conferences, etc. (parents should have the same understanding of what is going on as the staff!!!)
In society at large:
1) let's have universal health care (stop the financial incentives of hospitals to mandate care that pushes the margins of viability despite parental wishes); and while we're waiting, perhaps insurance companies have a role to play (Blue Shield, for example, has drawn up a fairly good information sheet on <26 weekers)
2) and life-long follow-up for all NICU grads
3) as well as realistic funding for the needs of families of children who survive the NICU with handicaps
If "society" wants to require everything be done for every baby all the time, they need to help pay for the consequences. So far, "society" has been incredibly unwilling to do so.
I'd like to hear what you think.
Thanks in advance for any help you can give.
Helen Harrison
And in the NICU:
We need to promote parental participation in rounds and charting, taping of important conferences, etc. (parents should have the same understanding of what is going on as the staff!!!)
In society at large:
1) let's have universal health care (stop the financial incentives of hospitals to mandate care that pushes the margins of viability despite parental wishes); and while we're waiting, perhaps insurance companies have a role to play (Blue Shield, for example, has drawn up a fairly good information sheet on <26 weekers)
2) and life-long follow-up for all NICU grads
3) as well as realistic funding for the needs of families of children who survive the NICU with handicaps
If "society" wants to require everything be done for every baby all the time, they need to help pay for the consequences. So far, "society" has been incredibly unwilling to do so.
I'd like to hear what you think.
Thanks in advance for any help you can give.
Helen Harrison
124 comments:
I apologize to all who now have a headache from trying to read such small font. No matter what I do, the font stays small.
Stacy
Helen, your list of ingredients for change is pretty comprehensive. My own thoughts drift to ethics and belief systems . . .
In each local community, draft a statement from Level III hospital's ethics committee regarding the hospital's position on viability and resuscitation. (The parents receive this statement at a prenatal visit at 20weeks.) And/or seek a similar statement from an ecumenical churches group, or from individual churches, religions, bishops, hospital chaplains. This statement discusses ethical options and encourages parents to explore their own beliefs relative to a very premature infant/sick infant and whether they would wish resuscitation or other heroic means to save the child's life.
Chris and Vic
To Chris and Vic:
I totally agree, and would hope some sort of ethics and outcomes handout based on geographical practices and statistics (rather than just those of local centers) be included. This will give parents a better idea of the big picture. Ideally there would eventually be some national, evidence-based, parent handout (based on NICHD data or Vermont-Oxford, or both).
Parents also need to know, as you point out, what is going on at the hospital where they may be delivering, and what their local choices might be. Medically savvy parents already know what hospital, what MD, they should choose for their delivery to get their wishes honored, the rest do not.
(And many medically savvy parents I talk to would choose a remote cabin in the mountains to deliver preterm, dangerous as this option is!)
It's sad that all I have to offer parents right now is the advice to 1) consider leaving the country for, say, the Netherlands (Welcome to Holland, indeed!)
2)seek out a NICU nurse for info on the treatment philosophies of the local neonatal units and act accordingly
3)call a lawyer.
I think having the religious views out there (which are generally far more receptive to palliative care than most parents think) is very important.
Another thought: this is, as several of you have already pointed out, largely a women's issue (although some heroic and truly wonderful dads do stick around!!).
Is there any way that childbirth instructors, or other non-medical women's rights advocates, could be part of getting out the information?
Thing is- your message isn't everyone's message.
Very good ideas, to a point. In several places though, I see the possibility of a (hopefully unintended) slippery slide into forced non-resusitation.
Particularly here:
6) promote a frank admission by the medical community about the "experimental," highly painful, and damaging nature of treatment of babies below 26 weeks
Insurance companies would LOVE an excuse not to cover NICU treatment. Our kids are not called "million dollar babies" just to be cute. If the word "experimental" comes into play, then you have handed them their "get out of jail free" card. What if the insurance industry decides to capitalize on it and set a gestational limit, below which they will not cover resuscitation and treatment?
3) mandate counseling for fertility treatment couples about the risks they are taking (this counseling would not be given by anyone with a financial stake in promoting fertility treatment)
Helen, once again, you have steped over the line. Why didnt you have counseling while you were pregnant or before you got pregnant? Why should women who have to endure infertility be singled out? Come on, write your own article. Or for once are you at a loss for words?
To anonymous re fertility treatments:
No, I'm not at a loss for words, but simply want to hear the thoughts of experienced and knowledgeable readers and am open to constructive suggestions.
Fertility treatments (and the need for them) greatly increase the risk for poor pregnancy outcomes. Parents aren't generally told this. In fact many are encouraged (or they encourage their fertilitity practitioner) to take risks such as going for multiples. I have seen fertility doctors actaully advertise for thier "ability" to create multiples. This is outrageous, and incredibly risky!
Afterwards, many parents complain that no one told them the risks. I think this situation can and should change.
And I wish I could have had counseling on prematurity before my first pregnancy in 1975!!!! It simply wasn't available, but I actively sought out all the information that was there.
By the second pregnancy (which went to term) I was much more knowledgeable and had made the contingency plans that so many medically savvy parents currently make.
To anonymous 1:10 who doesn't like the "message:"
Then you, and like-minded others, can simply ignore the message, and have your <26 weeker resuscitated and treated to the max. You can turn the whole thing over to the docs and the hospitals. That is the current default mode. And the docs and hospitals are smiling all the way to the bank.
I'm trying to get a message out to those who don't want this for their babies and families, or for those who might decide against resuscitation if they honestly knew what lay ahead and what their options actually are.
To future of hope who worries that acknowledging "experimentation" might give the insurance companies ideas:
The insurance companies are well aware of the situation, which has been openly described (except to parents, of course) for decades.
Books have been written about it. The NICHD in 1985 declared neonatal care as "based on limited knowledge of new modalities not subjected to critical studies prior to introduction and acceptance ...[where] therapeutic interventions may change within months before adequate studies of safety and efficacy are initiated, much less completed."
This is not only "experimentation" but irresponsible experimentation which does nothing to improve care.(I'm *for* ethically, scientifically sound, and openly declared experimentation, BTW).
I just came back from the "Hot Topics in Neonatology" conference where such major issues as oxygen use, abnormal blood pressure (its detection, meaning, and treatment), seizure detection and treatment, treatment for jaundice and much, much more was neatly summed up by two neonatologists' slides:"We don't know what we are doing." and "We don't have a clue."
Parents are not told about the many dangerous and damaging uncertainties in care for their babies <26 weeks (and over that age as well) when they are asked to give their "informed consent" for treatment.
I wish you could all have been with me at that conference where the words and concepts underlying the word "experimental" were very much in play.
Insurance companies looking for an "excuse" need look no further than the title of this blog.
Long time lurker---first time poster. I must start by thanking TPE for how open and frank you are about Paige. Your viewpoint is so, so needed, especially in view of all the "miracle" stories. Your love for your daughter, your joy in her accomplishments and your heartache when butting against some of her disabilities is evident on each page. So thank you.
To answer some of the points by Ms. Harrison:
I completely agree that parents need to be told about ALL the consequences of prematurity and NICU care. But this includes
1. voices of parents who chose to not resuscitate, and
2. parents of children who have done well. And yes, there are 25-weekers who are genuinely doing well (not just the "looks good"), succeeding in school, succeeding socially and other than being slightly small for their age and having the typical preemie head shape, indistinguishable from their peers. They do exist.
Re #6---“frank discussion from the medical community...” So that you are aware…the tone here is somewhat off-putting. My initial reaction to this was imagining a neo, head bowed in shame to say something like: “well, since we really don’t know anything about what we are doing, we’d like for you to let us please experiment on your child. Hopefully we won’t damage his / her brain too much in the process” I hope this is not what you have in mind.
Really, a frank discussion of the risks/benefits would be something more like this: “Many of the treatments your baby will recieve have never been formally tested in premature infants. However, this is true of many treatments in children in general and a surprisingly large number of treatments in adults. In addition, we do not know of the long-term effects of a lot of the treatments we are using. BUT...this is the best we've got. If you would like us to try support your child’s life these are the treatments we can use. The other option is comfort care in which we will keep your baby as pain and anxiety free as possible but will not intervene to keep your child breathing or keep the heart beating. We anticipate that death will occur within minutes to hours.”
Finally, I also hope you would include a statement to support the decision of all parents---even those who choose resuscitation for their 23-week 1 lb, infant. This means not only the follow-up care (with which I wholeheartedly agree) but also in the L and D room when the decision is being made.
To anonymous (the long-time lurker):
Yes, there are a few 25 weekers who are doing relatively well and parents need to know that they exist, also they should be told how rare a "good" outcome is at this gestational age and those below it.
Moreover, they need to know what children must go through to have even a small chance at a "good" outcome, and about the uniformity of brain abnormalities in these children.
They need to know, for example that:
"More than half of the infants in this gray zone will die, all of the survivors will have extended NICU courses marked by expensive, invasive, technological interventions, and almost half of the survivors will have permanent morbid handicaps. For most other patients (adults or older children) faced with comparable prognoses in other ICUs, their preferences, or those of their surrogates, would be the determining factors in decisions about continuing or withholding intensive care. That is [now] apparently not the case in the NICU" [Singh et al Resuscitation in the "gray zone" of viability. Pediatrics 2007; 120:519-526.]
The permanent morbid handicaps mentioned above are the handicaps that can be diagnosed by age 2. And as we have seen in this blog and in studies looking at older preemies, this is only the tip of the iceberg of eventual serious disability (eg. autism, psychiatric illness, cognitive, motor and health disorders) among these children.
The level of "uncertainty" and "experimentation" in the treatment of <26 weekers is considerably higher than it is in almost any other area of medicine (with the possible exceptions of the outer limits of cardiology and oncology), as physicians involved in these specialities have told me.
Both the AAP and ACOG define the area <26 weeks gestation as one that is so potentially profoundly burdensome (to child and family) that *informed* parental decision-making is necessary to go forward with it.
As for offering full treatment to 23 weekers, I am in total agreement that informed parents should have this option.
I am just reflecting and musing over the terminology, "informed consent". There has been a lot written on informed consent already, but I am trying NOT to remember anything I've read or learned during my own medical training/nursing training . . .
Here is my "conclusion," which applies only to myself:
I am the mother of the soon-to-be-born preemie, and the doc tells me what the odds are for survival and/or intact survival (see Helen's stats, Vermont-Oxford stats). The odds are not favorable for my 25-weeker--this is INFORMATION. But what comes next is NOT "consent". It is CHOICE--that is really what we are talking about: that we want to have more choice than we have had in the past, and that we want the choice to be well-informed.
Out of our individual values, we will choose. Some will choose very differently from others--since their values are very different.
So there is the input of INOFRMATION and there is the 2nd input of identification of VALUES prior to choice.
I wish Helen or I, myself, or anyone at all, could come up with a decision tree, with the arrows clearly marking the way (Dr. Rob had a humorous decision tree on how to choose a pediatrician not so long ago).
For example, IF this info (25 weeks, ___% chance of survival, ___% chance of intact survival, with ____% chance of severe disability) plus THIS value set (pro-choice, Christian religion, willingness to become stay-at-home mom indefinitely), then ----> resuscitate.
Consent? For me, consent implies that the medico-legal community has made a choice, and they are asking me to consent--or not. That is a whole different story, a whole different decision tree . . .
Chris and Vic
Surveys of neonatologists in the US have shown that most will not listen to parental choices or "informed consent" in any event.
Most will resuscitate and treat in the gray area regardless of what the parents say. Over 90% will resuscitate a 25 weeker even if the parents have declined resuscitation (according to Singh et al. cited above) and the majority will violate parents' wishes against resuscitation down to 23 weeks.
As for "informed consent" an American neonatologist remarked famously that "I think informed consent is a farce...the information [given parents] is what I want it to be." [Silverman WA. Informing and Consenting in _Where's the Evidence?_ 1998 Oxford University Press.]
This is one reason that I think the informed "consent" or "choice" process has to start well before a pregnancy gets into trouble and a neonatologist enters the picture.
It would be good if parents should have some idea of what they want well before labor and delivery (that is, if they want to make choices, some do not), and perhaps the ability to choose a hospital or birthing center where neos are not part of the picture.
Would March of Dimes be a helpful ally here? It would be nice to think so, but I'm not counting on it.
Women's Rights groups?
Childbirth educators?
Community ethics groups?
I would love to hear any thoughts on when and how to get the word out to parents. At the very least, families should be aware of AAP and ACOG statements on <26 weekers.
I don't have any answers, just lots of questions swirling in my mind.
But, I think that Helen is onto something with getting the word out early, not when a woman is in the maternity ward, with an unexpected emergency situation, trying to digest a lot of bad news very quickly.
Where I get hung up is on how different it feels when you are pregnant. Having been through the preemie journey once, and with an extremely good outcome, I've come up with my personal line in the sand for resuscitation, which may seem a little harsh to some. (And, no, I won't specify my personal # of weeks here, because I've seen that conversation get out of control!)
But, here's the thing. When I was in the hospital, getting my neonatology consultation, all I could focus on was the chance of things going well. I filtered and twisted everything I heard and read to support what I WANTED to hear, which was that this baby inside who I loved so much was going to be ok.
Was that just because I was getting the information too late in the game, or was it because I was so in love with that tiny little baby?
Right now, I'm not pregnant, and it's really easy for me to come up with my hypothetical cut-off dates for non-resuscitation, for palliative care, etc. But, I suspect that if I'm ever brave enough to get pregnant again, that overwhelming love and mama bear instinct could totally change my thinking.
Even with all of the advance information in the world, I don't know if I could follow through with my current cut-off dates.
But, I suppose, that would be my decision to live with, and if having extra information in advance wouldn't change my in-the-operating-room decision, well, that would just prove that there's no harm in giving that information to everyone, in case someone would make a different choice.
Although, if I DID get early-onset preeclampsia and HELLP syndrome again, and decided not to resuscitate, and the doctors overrode my wishes, well, that would be an unspeakable crime.
To Kathy,
These are going to be difficult conversations whenever, however, they are held, but I think prospective parents need to consider the issues early and often.
I think it is important for both parents to be on the same page here, otherwise it can become a major, marriage-destroying, bone of contention, with each partner trying to guilt-trip the other about whatever decision the other one made or wanted to make. I've seen this happen much too often.
At the very least, officially giving parents the info and "reading them their rights," so to speak, before the DR and NICU, would make it difficult for them to claim later that they weren't informed.
You'd think MDs would want this, but there is enormous resistance to giving parents info and choices.
Some of the studies I'm looking at now, concerning parents and neonatologists in the delivery room and NICU present a frightening picture of physician authoritarianism that is even worse than I thought.
Parents need to be brought back into decision-making, even if it's just to say -- for the record -- that they don't want to be the one to decide.
Here's another question. This is ambitious, but is it remotely feasible?
Medicine is moving away from preventative care, towards reactive care. Very few OBs talk to their patients about postpartum depression, which, depending on which study you go by, may be much more common than prematurity.
If only 1 in 8 pregnancies in America result in premature birth, well, from a medical efficiency standpoint, that would make 7 out of 8 routine prenatal conversations about prematurity unnecessary. (And cause unnecessary anxiety?) If each conversation lasts 2 minutes (ha!), how many millions of wasted dollars is that?
Not that I feel this way, of course, I'm just playing devil's advocate.
On the other hand, insurance companies are forcing OBs and women into medically unnecessary c-sections ("unnecessarians!"), because the risk of a VBAC going wrong is very, very slim, but very, very expensive. Likewise, the risk of any given pregnancy resulting in a micropreemie is slim, but extremely expensive.
Hmmm. Again, no answers from me, just some musings.
I just went to the Blue Shield of California site which has a good deal of information on prematurity. I remember seeing a very good info sheet from (I think) Blue Shield on <26 week birth, but there is so much on the website I couldn't immediately find it today.
Much as I hate to say it, I think the insurance companies have a role to play here, and it is a role most neonatologists have abdicated, since only 27% state that they feel part of their job is helping parents make choices at the margins of viability. [Bastek et al, Parental consultation practices at the border of viability. Pediatrics 2005;116:407-413.]
Concerning authoritarianism by doctors . . . I think the assumpttion is if you go to a doctor for prenatal care, you have turned yourself over to his/her expertise. You are NOT the expert--so you have contracted with someone (doc) who IS an expert. You are supposed to stop analyzing your situation once you have contracted with the doc--stop thinking, if you will. Stop choosing--your doctor knows what's best and will choose what's best for you (add paternalism to authoritarianism). IMO, you become a "kept woman".
Never mind the presumed trust in a doc who promised long ago to "do no harm". His promises/rights to not trump my dedication to my values, my child, my family, my spirituality.
There is no frame of reference in most of our lives for choosing a "Do Not Resuscitate" for a baby.
We do not confront death directly, even with adult deaths. We do not often tell ourselves to let go.
We do not see any redemptive value in hardship nor grief nor pain.
And what Kathy says, that we are in love with our unborn babies, is also compelling. Women who lend their bodies to the evolving baby DO fall in love and bond to them before they are born. (There is an old midwives song about "I loved you before you were born".)
And your maternal mind and your emotions might well be at odds.
Lastly, "quality of life" has not yet been brought up. I think one could argue that not only is there a reasonable expectation of future hardship for the individual preemie and the preemie's family;
but also that the "life" in the NICU is not likely to be high quality of life. The babies go through a lot--we think we are beginning to respect/address
their pain but they cannot reliably let us know if/when they feel pain, panic, hunger, etc. In an effort to save them, we are messing with their neurodevelopmental systems at a
very vulnerable time. And we are often leaving lasting "first impressions" on their neurological systems. Can we honestly call that good quality of life?
We know they often have altered responses to pain, ongoing in their childhood, if not longer.
At a time when the developmental psychologists say they should be developing trust, they have multiple caregivers, most of whom have to poke them, intubate and tape them, remove tape, restrain them, etc. Can that be optimal for development of TRUST?
When Helen writes, she quotes the good science about experiments that demonstrate outcomes. I am choosing to couch the choices in other terms . . .
Though it may not be scientific, nor fodder for scientific inquiry, I wish every one of us--doctors, nurse, parents, special ed teachers, social workers, PTs, OTs and SLPs--would make an effort to imagine how the preemie feels. That is, walk a mine in their shoes, and THEN make our pronouncements, our decisions and choices . . .
The "informed" part of informed consent must also include this trying to walk a mile in their preemie's shoes; must include values clarification (for both parents, as Helen states); as well as outcomes from good studies.
If it was me, I would spell out, in my own words, what I would consent to. I would do it incrementally--small bits of consent, to be given away step-by-step---because one decision or circumstance changes what may happen in the next hour or day (in labor and/or in the NICU). And then you really do have step-wise decisions to make--not just one blanket decision, signed at the outset of treatment.
I would reserve the right to talk it over with the docs, the chaplains, the grandmas, the mate, the sisters, the girlfriends--before making decisions/consenting.
If I thought that decisions were being taken away from me, I would terminate the contract with those doctors/hospitals. If I had to hire a lawyer to visit the NICU, to advocate for my positions,
I would do so.
Chris and Vic
Helen wrote : Much as I hate to say it, I think the insurance companies have a role to play here, and it is a role most neonatologists have abdicated, since only 27% state that they feel part of their job is helping parents make choices at the margins of viability.
What role do you feel that the insurance companies should play?
"Yes, there are a few 25 weekers who are doing relatively well and parents need to know that they exist, also they should be told how rare a "good" outcome is at this gestational age and those below it."
This is exactly the kind of thing that turns readers off. "long time lurker" stated that parents should be aware that there are 25 weekers that do well. Helen changes that to "relatively well" or good changed to "good," almost to indicate that the definition of good could indicate "not so good."
Why the change? To support her evidence? Or to just dig?
No matter how you look at it, my 25 weeker is doing very well. Not relatively well. She shows absolutely no signs of her prematurity or the "experimental" care that she recieved to save her life. She is 6 years old, in first grade, and equivalent in some skills to her peers, more skilled than some other peers, and falls short compared to others as well. Basically meaning she is average.
Yes, I know we are the rarity. Yes, I know what could have been.
Is there anything wrong with parents knowing that? I don't think so. Having hope does not always morph into false hope.
I think part of the process should require a NICU tour, or at least the viewing of photos of newborn preemies at various gestational ages. I think it would be a good reality check.
-Kristie
To anonymous who asked about the potential role of insurance companies:
I think they have an opportunity to get the information to parents that neonatologists and OBs seem unable or unwilling to give.
Blue Shield's website offerings on prematurity are a good start, but I think the insurance companies can be even more proactive in getting out the information to prospective parents and the public. I see them as informing their policy holders and others on evidence-based medicine and outcomes of various medical choices in many areas, not just prematurity.
I sincerely hope that we will see a day when insurance companies are not necessary because of single payer health care, but until then...
To Nancy, who complains that my reference to 25-weekers doing "relatively well" and good outcomes at 25 weeks being rare "turns readers off:"
If my posts bother you, than please don't read them, but they are based on the evidence that most 25 weekers either die or survive with disabilities.
If your daughter is an exception to this rule, be grateful, but recognize that her outcome is not typical.
Also, it is important to recognize that much isn't known about our children's outcomes even at age 6, as Terri with 2 (another mother of a 25 weeker who was doing well at age 6) can affirm.
I know that some of you are also "turned off" by the studies on outcomes, but they show that many important disabilities increase as extremely preterm (and even very preterm )children go from early school age to adolescence.
I sincerely hope that isn't the case for you and your daughter, but unfortunately it is the experience of most families.
I've been communicating recently with my perinatologist who did not want to resus. my 24 weeker. I was very informed, had every stat helen quotes here. Originally, on paper, I said not to resus. before 26 weeks, then in the delivery room, like Kathy, suggested..things changed and I wanted her saved.
My real point for helen is that my doctor recently said that he has more and more micro preemies who are doing well (no quotes around well) and he feels he needs to add these outcomes to his consultation with parents. Because the TRUTH is, micor preemie babies can do well, lead normal and productive lives. That information needs to be shared just as much as the negative.
It is about Choice.
To anonymous whose doctor is seeing more micropreemies doing well:
Other doctors are not finding this, such as Maureen Hack who just a few weeks ago, said that any improvements in outcomes in <1000 g babies (from cutting on the use of steroids, mostly) have not been extended to babies born in the gray zone.
The total picture is important because a single local experience with small demoninators of patients can give falsely optimistic or pessimistic information.
he specified the decrease in steroids as one reason but also listed others like: smart use and timing of betamethazone during pregnancy and NICU medical improvements like the use of caffeine, vigilant oxygen management, controlled environmental stimuli (ie Heidi Als), cleaner hospital personnel and equipment which leads to a decrease in infections, quicker release from the vent and the use of CPAP, the big push to use breast milk and the slow progression of feeding to prevent occurrence of NEC, the use of vitamins and other supplements to help brain development and OT's on site managing the positioning and handling of the micro preemies. These are just a few things mentioned.
To anon:
These things *may* be helping bigger preemies, but so far there is little, if any, indication that it is changing the outlook for micropreemies.
At this point severe disability among these babies has simply gone back to where it was in the 1980s. Retardation rates have not changed -- and this is the most common of "serious" micropreemie and regular preemie handicaps.
Right now the vast majority of micropreemie survivors -- 80 to 86% -- are going to have some sort of disability or functional impairment.
Parents should, of course, be told about the 14 to 20% of micropreemie NICU survivors who do not have these diagnoses, and about the >50% who die in the DR or NICU despite treatment. Then they should be allowed to have a choice that is honored by the physicians attending their delivery, as you did.
And I'm back again with more random thoughts. :-)
I'm glad that no one has misunderstood me that that crazy love you have for your unborn child means that you'd necessarily need to choose heroic measures. I'm totally on board with the idea that there are situations where the most loving thing to do is to let the baby go, to prevent suffering. I'm just not sure that in an emergency situation, I'd be able to see clearly enough to know which option would be the most loving, especially when no one has a crystal ball, and preemie outcomes cover a VERY wide range. There are preemies born weeks earlier than mine who, so far, seem to be doing better, and there are preemies born weeks later than mine who have died. Statistics and averages are for the rational mind, and I think in an emergency, I'd cling to the rare miracle story, not the more likely scenarios.
But maybe it's important to know in advance that the NICU isn't a fun place for the baby. I didn't know how much suffering was involved in being a preemie, and if you're choosing whether or not to put your baby through that, there's more to the choice than the statistical likelihood of disability down the road.
I also think that there's a real tension here where quality of life issues slam into disability rights issues.
I took a few medical ethics courses in college, and I'm in awe of how casually I took these issues back then. I remember saying with great confidence that neonatology can now save babies that a generation ago would have been miscarriages, and that there are situations where it would be better not to save the baby. Now that I HAVE one of those babies who would've been a miscarriage a generation ago, I could just go back in time and slap myself for being so cavalier about it all.
To Kathy who said: "There are preemies born weeks earlier than mine who, so far, seem to be doing better, and there are preemies born weeks later than mine who have died. Statistics and averages are for the rational mind, and I think in an emergency, I'd cling to the rare miracle story, not the more likely scenarios."
This is true,and probably characteristic of many people's reactions, and it is one reason I think the info should be presented in a non-emergency situation -- as part of routine prenatal care, the same info about Down Syndrome, spina bifida, and other problems are discussed (problems that are far more rare than prematurity).
Although there are some children of more advanced gestation who do worse than earlier babies -- my 29 week son, for example -- the odds get dramatically better after 26 weeks.
Despite being "in love" with their babies, the majority of women who are offered the tests for Down Syndrome, etc., get them and the majority who test positive end their pregnancies.
I son't know if the same proportions would choose palliative care for an <26 week preemie, but I think a significant number, if given information and options, probably would.
Whatever choice they ultimately make, parents at least deserve accurate, consistent, and complete information about prematurity and their ethical options. They don't seem to be getting it in many NICUs at present.
I am still in complete awe of the fact that people still don't know what "preemie" life is really all about..I didn't need anyone to tell me that life was going to be hard, to be honest w/you it didn't matter...And as for the use of fertility drugs, Helen not all women can conceive naturally, I was one of them and personally I find that over half of your "knowledge" makes me sick to my stomach on more than one occasion..Are you saying that I gave birth to my 1st ds at 20 wks was basically my fault b/c there is a "study" out there on the use of fertility drugs? If that is the case then I must tell you no I didn't deliver my son b/c I was carrying multiples, it had nothing to do w/me getting a little help to conceive..My 2nd son is a 26 wkr, and I'm sure to you he is not in what you would consider "the norm" either, but you know what his outcome is what it is, he is doing very well..Should this success not be told just b/c it's not so typical, I think not..People need to here of positive outcomes just as much as they need to hear of not so good ones..Seems you are always the "ring leader" on post like this, wonder why?
I think it all comes down to the fact that it needs to be a parents decision. Back in med school, I overheard a discussion among a handful of pediatric residents who all agreed that if they or their wife went into labor before 26 weeks, and delivery was imminent, they wouldn't go to a hospital. What does that say about the state of medical decision making??
Parents need to know all the facts, and in the delivery room during an emergency c-section isn't the time to be giving them...
To anonymous who wrote:
"personally I find that over half of your "knowledge" makes me sick to my stomach on more than one occasion.."
****
My knowledge is out of the mainstream medical literature and mainstream medical opinion.
If this makes you "sick," or if it doesn't matter to you that your life was going to be "hard under the circumstances," then, what is the problem?
You mention multiples,and that is a huge problem, but using fertility treatments, whether it results in multiples or not, is much more risky than natural conception. This is well documented.
The rest of your post is somewhat incoherent, but if you don't have a problem with your actions or with the outcomes of your actions, what is it you are protesting, exactly?
To NICU101:
Thank you!
You are so right!
I have heard female neonatologists (and a few males), whose names are household words (at least among the NICU community), say that they would head for the woods, or go to a remote mountain cabin, rather than entrust their own <26 week preterm newborn to a NICU. I know a few who have actually done this.
I often go to conferences in which the audience of medical professionals is given a case history of, say, a 650 g. baby, and asked: "Would you enforce treatment over the parents objections?"
Most hands go up.
Then they are asked:
"Would you want resuscitation and treatment if this were your own child?"
Nearly all the hands stay down.
To me, this speaks volumes.
It is winter break here and I am limited as to how much time and energy I can spend on anything else but Paige (since she is not in school). So, please forgive me for being absent during most of this discussion. In turn, it would be impossible for me to address the various comments.
One aspect that I will address is that of the common theme that runs through these discussions. We all (no matter the side you are on) want honest information to be given to parents.
Angry at Helen? Why? All she is trying to do is to insure that honest and accurate information is spoken regarding all aspects of prematurity. I, for one, am thankful, beyond words.
Angry about the IVF comment? Google it. Ask your doctor. The research is there. Helen is not fabricating it. Is it a hard pill to swallow? Absolutely!
As far as Helen being the "ring leader"... in this discussion she sure is. It's her article. But, throughout this blog there are many courageous people who have spoken. I am incredibly humbled by the stories and the people who tell them.
Lastly, I feel the largest injustice being done to all future parents is the lack of follow up studies. I feel each NICU should be required to track (to the best of their ability) each and every preemie born. The follow up should encompass more than physical abilities and the evaluations should be also filled out by teachers and even psychologists that treat the child. We also need to let the parent (of the child in the follow up research) know that they need to be honest. I can't even begin to count the number of times I have met a parent who says, "X was born at 24 weeks and he/she is fine now." only to get the full story once they hear mine (and realize that they are not alone in dealing with the long term issues related to prematurity).
To Helen and all who speak out to try to make the world a better place for future preemies, thank you. To all those who are trying to make sure that parents have the right to choose comfort care, I thank you too.
I am not sure what part of my post you are not understanding..As for protesting, I am not trying to protest anything just simply saying that getting the word out there w/all the negativity of having a preemie really wouldn't matter to some parents.. not all outcomes are what you want to make them out to be, you can do all the research in the world and not all outcomes are the same..When someone points out the "exception" to all of your *knowledge* do you ever just accept what that parent has said as maybe just maybe their child will not fall under the statistics or do you always have to come back w/your tidbits of knowledge, it's like you choose to dismiss the "good" and always are so eager to point out the "not so good"..
I've been trying to understand for a long time why Helen's so often a lightning rod here. Personally, I don't mind hearing negative statistics about preemies, because it makes me all the more grateful for how well things are going for my family. We dodged a bullet, and it's interesting/humbling to learn just how big that bullet was. Also, I'm learning what to look out for down the road. And, I believe that if I had a less-positive outcome, her knowledge and this blog would give me the comfort of knowing that I'm not alone, or that our problems weren't a result of bad parenting.
The best I can figure is that either people can't help but personalize the information, so maybe statements like "80% of preemies at this gestational age" sounds like "YOUR CHILD." Which would explain why people resist hearing statistics for which they are in the minority.
Or, maybe, people are afraid of spreading negative information, because they picture some other mother out there, destined to have a child as wonderful as theirs, who would be scared into not rescusitating. Essentially, they imagine their beloved child not living, or they hear what Helen says as "Your child would be better off dead." Which would, naturally, hurt like hell.
Is that it? Is it that it's very, very difficult for preemie parents to discuss prematurity in the abstract, because we can't help but see our own children?
Or is it that only some people feel that there's too much press about the miracle stories and that there needs to be something to counter it? Maybe if you don't perceive the press and general public's understanding of prematurity to be outlandishly optimistic, all of the pessimistic info doesn't sound like restoring balance, it sounds like a campaign against hope, or against preemies themselves.
I'm honestly just trying to understand where everyone's coming from, and why it's so hard to communicate about these issues.
I hope I'm not adding fuel to the fire, or accidentally offending anyone, myself!
My 25weeker just scored in the 99th percentile in expressive language. 99th. We left the hospital and didn't look back. We are not included in studies. People who are doing well move on. Think about how that can affect a sample population. Because I expect a Helen vitriol of "then why are you here' it is because I do feel some kind of moral obligation to tell others there is another side to this story. Miracle baby.
Let's return to the topic here - Helen has not asked for her Truth here. She has asked for some support in this article. She is not indicating that she will gate keep on the information. So, let's put our personal opinions aside and provide our comments accordingly. Assume the result she produces will reflect a range of opinions and ask to see the final outcome.
Let's pull together as a community and regardless of personal issues, we all know damn well that given our choice, we would like to make it easier for those who come after us.
All parents who are likely to have a preterm baby, such as those who are expecting more than two babies, should be required to visit a NICU to see the babies--seeing these babies hooked to machines will have a much larger impact than reading about it.
There should also be some sort of organization where parents of NICU survivors can council and support parents whose babies are currently in the NICU. If I had not been able to speak to a mother--who was actually one of my son's nurses--who had a child in the NICU several years before, I don't think I would have managed emotionally as well as I did.
I agree with long time listener; in saying that i still believe that it is important to give BOTH sides, even if they are not balanced 50/50 to parents. Yes, having a preemie is difficult and full of challenges BUT some do okay and live normal lives. As to Helen's comment about Downs babies being aborted, you should know that there is a huge uprising against that trend and almost 100%, something like 99.9999%, of parents of Downs children feel blessed by their children. If you need documentation on this, I have 2 articles from the NY Times that discuss this. I think in many way, parents of micro preemies, feel somewhat similar. The situation is not ideal but we love our children anyway and couldn't imagine our life without them...disabilities or not. There is an emotional piece that can never be address with research, studies or any stats. You will never get me to say that I wish my 590 g. baby was not saved...NEVER!
Re "blessed by Down's Syndrome:"
I have seen the articles you mentioned, but haven't seen any evidence showing 99.9% of parents feel "blessed."
As with prematurity, DS varies enormously in its effects. Some of these kids die in the hospital, never having been able to go home, after years of horrendous and futile surgery. Just got an Xmas card from a family friend who had such an experience and doesn't feel she or her child were "blessed" but rather tortured to a brief painful life by Baby Doe legislation.
I think it is human nature to want to declare your young disabled child "a blessing" to help mobilize the strength and courage you need to go forward.
But people seeing the situation from the outside are rarely convinced. And as time goes by, many parents, in my experience, tend to wish they hadn't been singled out for their "blessings."
Many parents still opt to be tested and most still end their pregnancies rather than take a chance with being "blessed."
To longtime listener who said
"let's return to the topic here..."
Yes, thank you.
The information given to parents is going to be what it is, not something I'm making up or what some of you may want it to be. It will be data that others have gathered, and, one hopes, will be honest, objective, and complete -- i.e. not just the 2 year old severe disability stats.
What I would like from the rest of you is:
how/when to give this information to parents so it will be of most use?
Is it possible to incorporate it into prenatal care? childbirth istruction? How many of you actually made it to a prepared childbirth class before delivering prematurely?
Should the info be made available by insurance companies? MOD? women's rights groups? clergy groups? all of the above?
Should financial and other related social issues be discussed as well?
What would it have been helpful for you to know and when... that sort of thing.
Helen, and I can tell you about many cards and stories I have of people who feel the total opposite as your friend, BLESSED by their child.
You surround yourself with only those people who are of like mind. That to me is your downfall. You don't seem to respect any perspective that you can't see or feel for yourself. To me that makes anything you publish slanted and unbalanced. Your work would go so much further and be so much more beneficial if you embraced both sides.
HH,
If you spent less time responding to comments you might find time to write your article! Why is it that you are always on the defensive? Maybe because most people dont see things the way you do.
"You surround yourself with only those people who are of like mind. That to me is your downfall. You don't seem to respect any perspective that you can't see or feel for yourself" Anon 12:42
Amen! Thanks for pointing that out. Anyone who disagrees with the mighty Helen gets shut down immediately.
Helen, go write your article and stop trying to force your opinions on everyone.
"Is it possible to incorporate it into prenatal care? childbirth istruction? How many of you actually made it to a prepared childbirth class before delivering prematurely?"
Childbirth classes are way too late. My daughter was born before ours, and she's a 31-weeker.
I also don't think that most OBs would feel qualified to have these conversations. They're aware that neonatology is not their area of expertise, and so making it part of routine prenatal care could be tricky.
To the very angry anonymous who said:
"HH,
If you spent less time responding to comments you might find time to write your article!"
***
I'm working on the article, and finding the discussion and help I'm getting off the blog from many of you to be extremely helpful.
I'm even managing to get the cards out this year so at least they'll postmarked before Christmas.
****
"Why is it that you are always on the defensive? Maybe because most people dont see things the way you do. "
***
Actually, if the polls are to be believed, most people do see things my way. But a very emotional and vocal minority don't like this. I see them as the ones on the defensive.
***
"You surround yourself with only those people who are of like mind. "
As opposed to you and your friends?
****
"That to me is your downfall.
You don't seem to respect any perspective that you can't see or feel for yourself" Anon 12:42
Amen! Thanks for pointing that out. Anyone who disagrees with the mighty Helen gets shut down immediately."
My downfall? Apparently enough people are interested in what I have to say that they are asking me to write medical journal articles and give lectures on these topics. Haven't fallen down yet.
As for respecting those who deal in personal anonymous insults...no I don't. But neither I nor anyone else is trying to shut you down.
***
"Helen, go write your article and stop trying to force your opinions on everyone."
I'm not trying to force anything on anyone. I'm trying to give parents a chance at the kinds of informed choice available to doctors, med students, and others with medical/legal knowledge.
Why are you against this, anonymous?
At this time in history, when
I think a lot of people are "Googling" for health care info--indeed, as a way of getting a 2nd opinion--it would be great if this info was available on a "popular" web site, such as MOD . . . But I don't think MOD has BALANCED INFORMATION as their mission. Maybe they could be persuaded--I don't know.
The American Academy of Pediatrics web site or the ACOG org might be a better bet. But maybe the web sites would give the party line as at Hot Topics in Neonatology, as reported by Helen. The docs said they would resuscitate the preemies in that "grey" area but
they would want something very different for their own.
I don't have the time to do this right now, but I wonder what would come up in the first 50 or so hits if you googled "prematurity" or "preemies". Does anybody know?
Maybe at those prenatal visits, the OB/Gyns could suggest web sites that give solid and up-to-date info on the benefits/risks involved in prematurity. Did anybody get that kind of thing from their own OB/Gyn?
I shudder to think what would happen if a parent who was threatening to deliver prematurely called her local NICU. I think most people who work in NICUs don't have any idea . . . about long-term issues and outcomes. (I KNOW this to be true in my NICU.)
But the NICU might have handouts or have the ability to send electronic handouts, or name the good web sites. (Sorry, nicu101, I don't think taking a tour of the NICU gives you any idea of the long-term issues, nor of the stress on the infants in their isolette-condos. And seeing a 25-weeker in an isolette doesn't tell you anything about what that kiddo might have to deal with as a 3-year-old or a 6-yr-old or a teen or adult. Only the good follow-up studies can give you that bigger picture.)
Kathy, I think your remarks are insightful. You are asking some really good questions, such as "Why have I never thought about this before? Never REALIZED, even if I took an ethics course?" Even for myself, I worked in the NICU for at least 4 or 5 years before I started looking HARD at those little faces and bodies, and asking "I wonder what your life is going to be like? I think if we knew what your life was going to be like, it would change our practice here in the NICU." I said it to myself for a while, then I said it out loud to my fellow nurses. Still, even though 3 nurses in my NICU have had preemies, and our colleagues continue to hear about them over the years, no one really realizes, I don't believe. I don't know why that is. What is it that forces you, finally, to realize?
And yes, we are defensive--defening our choices, defending our kids because these ideas about REAL choice could be imagined to be a threat to their existence.
So be it if we are defensive. That is where we are right now:
Be where you are?
Is that far?
It's as far as you are!
Chris and Vic
HH said:
"Actually, if the polls are to be believed, most people do see things my way. But a very emotional and vocal minority don't like this. I see them as the ones on the defensive."
Polls! I'd love to see this. You have polls that show that parents of micro preemies wish they weren't resusciated. Let's see that research. I don't believe it! Present that data PLEASE!
The docs who resuscitate other people's kids in the gray zone but would not choose it for their own families:
Could it be fear of malpractice lawsuits? Having to prove that they've done everything possible to save the baby?
Do docs ever get sued for doing TOO much for a patient?
Again, I'm sorry, I'm going off-topic a little here...
The polls I'm talking about show that parents want information and choices concerning treatment possiblities after giving birth to a disabled child.[such as: Taylor. NEJM 1991;322:1891-1892.]
The only polls of micropreemie families, taken in Canada, have been biased by the exclusion of the majority of those parents -- those whose children died despite treatment, died in childhood, or those whose children weren't resuscitated, as well as those who failed to return for follow-up (who tend to be the most severely disabled kids).
And even this study did not address the question you asked, but asked instead if intensive care should be mandatory for these children. Of the minority of ELBW parents who were studied by Streiner et al., 64% said that all extremely low birth weight infants should be resuscitated regardless of prognosis.[Streiner et al.Pediatrics 2001;108:152-157] as compared with only 6% of medical professionals asked the same question.
Other studies, by Carolyn Daniels in Ontario, of parents who have chosen not resuscitate or to remove their ELBW infants from life support showed that they, too, overwhelmingly agreed with and felt comfortable with their decisions for non-treatment after the fact.
What we need is a prospective study that looks at all families of ELBW liveborn infants over a period of decades, and samples their views over time.
And even better, give parents a choice between a center that offers mandatory resuscitation for all babies versus a center that offers palliative care for babies <26 weeks. Let the parents vote with their feet.
I'm impressed by the data on what parents *do,* rather than what they *say,* when given information and choices. The Down Syndrome data shows that 2/3 offered testing get it done, and, of those who test positive, 92% end their pregnancies.
[Palamaki, Haddow, Beauregard NEJM 1996;334:1409-1410.] I believe, here is a more recent study showing similar numbers that I will hunt down if you'd like it.
It should be noted that I am not coming down in favor of one decision over another (though I would personally *not* opt for resuscitation and treatment <26 weeks), only that both choices should be available,informed, supported and made by the *parents.*
Balanced information. That is the ideal situation that I would be striving for. If anyone is shocked when reading this blog, it shows how unbalanced the information is that you have received. Both sides should be told, both the good and scary!
Helen, I think that ALL parents should receive a pamphlet when the leave the hospital that spells out the long term issues related to prematurity. I think another pamphlet should be given at EVERY well baby check.
In my perfect world, one (of many) thing I would love to see go away is the shell shocked parent as their child is turning 3, when they are realizing that they may not catch up by age 2/3. Then there is that shell shocked parent when their child is school aged and struggling on many levels.
What I would love to see is a world filled with preemies who have been followed through a NICU follow up program and doctors making changes to current NICU treatments based on the outcomes of preemies. This cannot be done by only following them through age 2/3. Who can pay for all of this? I don't have those answers. But, since Paige's hospital bill was well over $500,000 (9 years ago), I'm guessing the NICU's should be able to fund it.
Kathy wrote: "Could it be fear of malpractice lawsuits? Having to prove that they've done everything possible to save the baby?"
Hi Kathy,
I am not an expert about the topic but a few ideas come to mind. I am sure that most docs out there do what the parents ask them to do. Also, there are laws that require docs to resuscitate in certain situation. There are docs out there who do risk their jobs to give the parent ALL of the options.
Kathy also wrote: "Do docs ever get sued for doing TOO much for a patient?"
Yes! Miller v. Columbia/HCA
I remember asking my doc at an early appt what is the cut off for saving a preemie at our hospital. He said 22 weeks but didn't mention anything about what life would be like for a 22 weeker. As one who concieved twins with the help of fertility drugs, I remember at my initial consult I was given the odds (very low) of concieving multiples with the type of drug I was being given. At the time I was only longing for one child after trying for so long, the thought of multiples went in one ear and out the other. It would have been helpful during my 20 week appt or so to be given even a pamphlet about prematurity. Not just what to look for in terms of PTL, but outcomes for micropreemies. I am against parents-to-be being required to visit a NICU for two reasons. One, the NICU is not there to serve as a zoo. The last thing preemie parents need to see in a bunch of pregnant women rubbing their bellies parading through the place where your infants are struggling for their lives, with a look of pity, or saying, look how tiny! Second, we were given the offer to tour our NICU when I was first admitted for PTL and we refused. We were looking for hope, not giving in. So, I think the best way for me to have recieved preemie information during my pregnany would have been aroudn the time when preemies can be saved, 22, 23, 24 weeks. A doc can take a few min to go over hospital policy, what the law mandates in your state, and remind about the symptoms of PTL I believe that at any time before, parents will not hear it. By the way, I will probably need fertility drugs to concieve again, and I will take them if I have too. I will be worried about being pregnant with multiples if I was blessed to be given the opportunity to carry them again, but I wouldn't change a thing! So, even after all the knowledge I have about preemies, I would take the risk again!
I hope you all don't mind if I don't hop into the debate here,
but to Helen:
One of the things the families discussed while we were in the NICU was putting together a book of stories. We wanted to address all kinds of issues (not just prematurity) but omphalocele, ECMO, and birth defects, etc. told from the parents' perspective of what it was like, what happened and what it's like now, and we thought it should be put in the OB's office and not in the NICU, the reason being a pregnant mother would be apt to pick it up and read it in the office. We felt the book should be solely written by parents without any medical statistics (because they can so often be manipulated) and that way it was always personal. My son was born at the University of Iowa and they do try to follow up long term with their babies, but it is difficult as families move and some tend to stop coming (I think all of us as preemie parents can agree that the doctor's visits get seriously old), but even still you have to get reports on long-term statistics from them as they are not published.
But I always like the idea of a book.
For the record, my husband and I did have a doctor who sat us down and talked to us very frankly about the long-term complications that preemies can face, and not all of it was pretty, but not all of it was gloom and doom, either. We were explained to at length about school problems, learning disabilities, and he also was pretty frank with us about the fact that my son might not live an adult-aged life because of his significant lung disease. This discussion happened when my son was 2 months old, in the NICU. I do know that if it had happened 2 months before his birth it wouldn't have mattered. I'd have resuscitated him anyway and hoped for the best. But that's just me.
I think that the best way to distribute this info would be through “What to Expect” type books and websites. Most pregnant women are not going to look the March of Dimes website or even any Academy of Pediatrics-type website organization; they tune into more informal and chatty, but still respected, sources of information. The majority of the pregnant women I have known have read ‘what is happening this week of your pregnancy’ books or signed up for the similar e-mails. Those who didn’t basically don’t read, period.
I know that the authors and publishers of this information want to be reassuring and not alarming, but this information could be presented as just more interesting facts. Fetal development is obviously one of the main areas covered. It would be easy and natural to add a “What if your baby was born now” section. I do not think this would be as scary to the average pregnant woman as it may seem to the people reading this blog because most (quite rightly) will think she will never be in that situation. It will just be more tidbits of fascinating information. However, if I woman should suddenly find herself at risk for premature birth at least she will have basic information to go on. And of course resources for more detailed information could also be provided.
I remember getting my ‘this week of your pregnancy’ e-mail at 24 weeks and it saying that for the first time the baby has a somewhat reasonable chance of surviving outside the womb. I was so ignorant, I didn’t even know when a fetus became viable. I assumed that it wasn’t till later. I thought this information was very interesting. I wondered how such babies turned out. Unlike many, I figured that few to none could be normal. I also assumed that heroic methods would not be made to “save” them unless the mother, due to her personal beliefs, insisted.
Despite my interest, I did not do any more research on the subject. My pregnancy was going along perfectly, I was very busy, and I thought that there was no way I would ever be in that situation. Two weeks later I went into preterm labor...
I should point out that I knew I had several risk factors for preterm labor, but when I asked “how preterm?” I was told “just a few weeks” and that I would be monitored more closely in my third trimester. So I was not worried (and not prepared or informed).
There was a poster where a got my ultrasounds out that read something like “Know the Signs of Preterm Labor.” I dutifully read this poster, but it also did nothing to alert or prepare me. I think that one of the reasons for this is that for some odd reason it was illustrated by a woman who appeared to be 41 weeks pregnant with triplets. This furthered my ‘so-some-people-deliver-at 35-or-36-weeks,-big-deal’ mindset. If it were illustrated by a woman who barely appeared pregnant, I think I would have been much more alarmed and taken things more seriously. The poster also could have included some information on the serious consequences of premature birth instead of just telling you rather obvious things like to report rhythmical contractions to your doctor.
But to get back to my main point, I think the best method of preparing women ahead of time is through the standard what-to-expect-this-week-type material. I do not know the politics involved, but there are several different publishers of this sort of material and maybe at least one would be interested.
I like "usually-a-lurker's" suggestions a lot!
Now let's figure out how to reach those who
1) don't read;
2) have put themselves into the hands of experts and allow those experts to do all the thinking/worrying;
3) think that they are "entitled" to normalcy and good outcomes.
Re #3: Pardon my cynicism, but none of us was ever promised a rose garden. To believe in entitlement--that you DESERVE the very best--is a belief whereby you set yourself up for a fall. Any of us could have a preemie, or a child with special needs, or a child that falls and ends up with a traumatic brain injury (front page of New York Times this a.m. is about concussions in football).
Hardship will befall all of us some time or another. We need to be ready, and not surprised. We need to find the redemptive value in hardship. And once hardship finds us, we need to learn "to see in the dark" (not my original thought--I heard it somewhere else, just this week--I think on WPR/NPR in a poetry circle for cancer survivors).
Chris and Vic
Helen;
Your topic ideas for the article are fabulous. I agree that so much more needs to be done in the way of educating parents, the public, and even neonatologists.
Back in the early 90's, there was a segment on prematurity on "48 HOURS" regarding prematurity. It actually followed a few families beyond the NICU with a follow-up segment 3 years later. Two of the families who were dealing with significant disabilities in their children were amazingly courageous to say that saving their kids might not have been a good thing. It was pretty shocking to hear parents admit this on a prime-time news segment. Erin Moriarty was the interviewer at the time, and because it was such a balanced and somewhat long-term look at prematurity, I wrote to her and thanked her for her work. She actually wrote back.
Currently, my neice is pregnant with twins, due at the end of Feb -when I found out she was pregnant with twins about 2.5 months ago, I sent her a link to info on prematurity, outcomes, parental involvement in choices at various gestational ages. She thanked me profusely for sending the link. The only indepth information I could find on the issue? A health insurance company website.
Why is this information so hard to find?
When my girls were born, their birth was highly unusual - so much so, that the hospital public relations dept got on the phone (without our knowledge) and called CNN. CNN was standing by with a jet to fly to our area to interview us. We said "absolutely not." We were shell-shocked, grieving, grappling with the present and what the future held - the hospital truly could not have cared less about that - only that they got their 15 minutes of fame. A few months later the same public relations department called us at home and said that they wanted to set up an interview with our state's largest Sunday newpaper - again we said "absolutely not". I saw the circus mentality when the McCaughey septuplets were born - the hospital personnel so willing to get on TV for their accolades - where are those people now that these kids have some significant issues? A few years back, a hospital in Michigan delivered sextuplets - they set up a website to update the public and media on the babies' conditions. From what I understand, most of these kiddos are really in tough shape now. I'm willing to bet the hospital is no longer updating the public and media on the significant dx among the 6.
Anyway, Helen - hope the article goes well - it's certainly needed even after ALL these years of saving micropreemies, which to me is most shocking of all.
"
We need to promote parental participation in rounds and charting, taping of important conferences, etc. (parents should have the same understanding of what is going on as the staff!!!)"
For me, this by far would be the most helpful. The NICU is a scary place, and sometimes you almost feel like the nurses are irritated that you're just a "lay person." I didn't really feel as though I was a mother until AFTER we left. And that should never happen. We should be given the opportunity to be as involved as possible in their care. Thank you for acknowledging this, and Merry Christmas!!!
"
We need to promote parental participation in rounds and charting, taping of important conferences, etc. (parents should have the same understanding of what is going on as the staff!!!)"
For me, this by far would be the most helpful. The NICU is a scary place, and sometimes you almost feel like the nurses are irritated that you're just a "lay person." I didn't really feel as though I was a mother until AFTER we left. And that should never happen. We should be given the opportunity to be as involved as possible in their care. Thank you for acknowledging this, and Merry Christmas!!!
Helen;
Under #7 with the economic toll, I think it is important to also discuss the fact that a birth of a micropreemie is often career-ending for one of the parents, usually the mother d/t all the care needed afterward. We were unaware of the massive amount of physician-specialists that would invade our lives, or the specialists involved in other areas - PT, OT, speech, orthotics, w/c companies, etc. Someone (again, usually the mother) must be the one to coordinate all of this. In addition, there are the school services, the social services. It is exhausting to keep all the balls in the air.
I find it interesting that 50 years ago, children with severe disabilities were often placed in institutional care, as it was acknowledged how difficult caregiving was on the entire family. Now, however, a family is expected to not only care for the family member at home, but do so with little to no support, AND is expected that mom and dad have a career also. What was once caregiving by a staff of people, is now caregiving by one (or 2), 24/7. It stands to reason that this would take a toll on a couple and a family. Also, care that may be available when a child is small, often disappears as the child ages and behaviors and size become problematic for typical day cares or private caregivers. No child care, no career.
There was a wonderful study done by MetLife a few years back that discusses how women are so economically disadvantaged compared with men in a caregiving situation. Women often must take time off work in a normal situation, but if there is a disabled family member to care for, years of productivity in the workforce is lost, decreasing benefits dramatically. I believe the calculated loss in lifetime benefits was somewhere between a half and quarter million dollars.
ManPower also discussed people who were considered difficult to employ. Among those most difficult were those with chronic health conditions, disabilities, and MOTHERS of children with disabilities. People do not realize that a situation like this can cause them to be a relatively comfortable middle class couple to virtually poverty-stricken.
Difficult to hear, but important none-the-less.
terri w/2 wrote: "Under #7 with the economic toll, I think it is important to also discuss the fact that a birth of a micropreemie is often career-ending for one of the parents, usually the mother d/t all the care needed afterward."
Great point Terri!
I was an insurance agent before Paige was born. Not only was there no way for me to continue working (besides weekly doc visits we had various in home therapies 5 days per week), leaving my job also meant giving up a company car.
I have not worked in 9 years. In those 9 years, not one single month has gone by without having to take Paige (and now Tyler) to a doctor or specialist.
Two days ago I was on the phone with a bill collector (one of the many medical bills from Paige's tests) who asked me why I didn't work. I almost started crying. I guess I could work nights somewhere (we live in the country so it wouldn't be easy) but then how in the world would I work on my marriage. Honestly, it takes work to stay married when you deal with the issues that we deal with, on a daily basis. And, when would I sleep (with a toddler at home)?
Helen said "extend this to high school biology and "family life" classes, with comprehensive coverage about what is and isn't possible, biologically, at various gestational ages."
Mandatory education about all aspects of childbirth and about our particular medical birthing system should be taught including the realities of preterm birth and its sequelae.
Each young person should know the potential realities they may deal with as well as the choices they may have to make. They should also become aware of health care insurance and how it works and the impact health care insurance has on their particular health care experience.
They should learn about their relative loss of authority when they walk into a hospital and turn their decision making, unwittingly, over to a physician. They can become empowered as they learn, intelligently, about the health care system and the decisions that are being made for them. They can become empowered to make their own decisions within that system.
They should learn about the long term financial impacts of caring for the increasing numbers of children with disabilities - in a society that does not have financial supports in place to support these children and families adequately.
They can learn how these stressors, with inadequate family and community supports available, contribute to the breakdown of individuals and families.
I think that laying a firm foundation of knowledge while in high school will contribute to more intelligent decision making in the population as a whole. It may even contribute to changes in the system as the realities of these situations become part of a national consciousness.
Why do we "dumb down" our young people by NOT giving them this information already - information on one of the most significant events of their life - the birth of their child?
Joan
Good points, Joan.
I see too, that the ignorance of this issue extends beyond the general public and pregnant couples all the way to medical personnel. There have been numerous times in the past few years that specialists have asked about my daughter's history and I've told them about her extreme prematurity, IVH, etc. There response usually is - oh, but neonatology has advanced so much in recent years that this doesn't happen much anymore. RIIIIIGHT. Which causes me to wonder . .what are physicians learning in medical school about prematurity?
So many terrific suggestions to follow-up on here! Thank you all!
Today, I need to do a little last minute Xmas shopping -- DH is home and looking after Ed, so I better get out while I can.
On my shopping trip I hope to pick up a copy of the important new book by Shannon Brownlee entitled "Overtreatment," which Chris and Vic recommended in an off-blog post.
"Overtreated" was rated in the New York Times as the number 1 book of the year in economics, and apparently it mentions NICU care as a major contributors to escalating health care costs and poor outcomes. I think any rational approach to health care reform is going to involve closely scrutinizing neonatology, and I hope that informed chioce *of all kinds* can be preserved when this happens.
I like the idea of the What to Expect books or Baby Center emails including some info, although I bet they'll resist adding anything that's a downer. (Oh, what a stab through the heart it was to keep getting the iVillage pregnancy emails long after my daughter was born, talking about what my pregnancy should be like at that stage!)
I remember looking forward to that milestone of "viability," thinking with a sigh of relief that no matter what happened from that point on, at least the baby would live. And a friend who gave birth to a healthy FT baby yesterday blogged with great excitement and pride MONTHS ago that according to Baby Center, her baby was now at the age of viability! woo-hoo!
Now, I think that I were to have another baby, that period of 22-32 weeks would be a time of great anxiety for me. NOT that I'm saying that it's better to miscarry than have a micropreemie, please don't misunderstand, and come to think of it, the whole pregnancy would be an anxiety fest, but now I'm aware that having a micropreemie presents certain unique challenges.
And, I have a bone to pick with that darn What to Expect book. When I came down with the worst headache of my life, barely into my third trimester, What to Expect just told me that headaches are normal in pregnancy. Preeclampsia isn't mentioned until much later in the book. It's a very good thing I called a nurse!
To anon who said,
"At the very least, officially giving parents the info and 'reading them their rights,' so to speak, before the DR and NICU, would make it difficult for them to claim later that they weren't informed. You'd think MDs would want this, but there is enormous resistance to giving parents info and choices."
I think there is concerted resistance by OBs and by fertility clinis to giving parents information about prematurity and its outcomes. So, when Helen asks---should we try to incorporate this into prenatal education or prenatal care---I say ABSOLUTELY.
This does not mean we need to address every single one of the 4 million women who will deliver each year in the US. Let's just start with those who are 'high risk'. Having been high risk and a client at a fertility clinic in my first pregnancy, I am shocked in retrospect how little information I was given about prematurity and its outcomes, as well as about artificial reproductive technology. It is not difficult for docs to get this information, they don't need to reinvent the wheel---any doctor who belongs to ACOG (American College of Obstetrics and Gynecology) and most high risk OBs do----gets the ACOG practice bulletins for FREE. These practice bulletins are easily digestible, they synthesize research, and provide guidelines for practice. They also offer footnotes for other medical articles parents might want to consult. While the bulletins are not always fully up to date and privilege the obstetrician over a maternal or fetal position, they are a start. I would recommend that every high risk OB give their patients the ACOG bulletins on preterm labor and resuscitation limits (which I have posted at my blog, breech mama). The other set of handouts I'd like seen distributed to every high risk pregnant woman are the recent New England Journal of Medicine articles on long term outcomes of prematurity---esp. those discussing micro preemies, as well as Vermont Oxford or NIHCD data on outcomes. This is just a start but would be way way more than I ever saw.
My OB's gave me a few dated articles on breech deliveries but nothing on preterm labor, nor preemie outcomes, nor multiples, nor risks of artificial reproductive technology.
It was only long after my delivery that I found out that even a rather low risk treatment like IUI (intra-uterine insemination) can lead to preterm delivery, ditto for ovarian hyperstimulation, ditto for a fetal reduction. Each of these circumstances compounded my chance of a preterm delivery, but the docs never mentioned it. I could have saved myself a lot of guilt and grief had I known that developing PROM "inexplicably" at 26 weeks was really not that inexplicable.
Hi Helen,
A very interesting post and comment string. I would be very interested to read the article when if finally comes out. I have a few comments to offer and a suggestion or two that I think might be helpful.
First the comments. I'm pleased that you are down to 26 weeks, there was a time when you were at 28 weeks. I think this is probably the right place for the public and medicine to be finding compromise in starting the neonatal resuscitation discussions. I think the problem is that in this reality of rapid advances (what you would label experimentation, but physicians would label compassionate care) outcomes for 25 weekers are already very close to the same as 26 weekers. The divide now seems to be 24 to 25 weekers. Obviously, we won't know for 20 years what the long term outcomes will be. We got to 26 weeks through this system that you would call the Premie experiments and for those parents who would lean towards resuscitation, my opinion is that 25 weeks (and I am basing this on Moreen Hack's data) will not be drastically different from 26 weeks. I do not feel that way about 24 weekers. It is clear that they can have pristine outcomes. It is also clear that such an outcome is an exception to the rule in the current practice environment.
Now on to my suggestions. In making suggestions about how to have these discussions, I think it is important for physicians and parents to consider the accuracy of dating. In many cases 24-25 weekers who are threatening delivery may have poor prenatal care. What do we do when dates are made on late ultrasounds, which can be off by as much as two weeks? I.e. the difference between 23 and 25 weeks, where I have extreme difficulty in making recommendations (or 24 versus 26 weeks) which would cross your parameters. Parents and advocates need to understand that physicians cannot do the impossible. We cannot predict the future in such situations. We cannot give the odds of a pristine outcome. The best we can do in these situations is form an honest relationship in which we partner with parents, do the best to assess their wishes and do the best to follow those wishes. But parents have to understand that by law, a viable child also has rights. Until that law is changed, physicians are in a tight spot with some of the positions that are sometimes suggested (even if they agree with them). In regards to this last statement - I suspect that is why you see such a dichotomy between the hands of caregivers in what they would do as a physician versus what they would want for their own child. The law does affect medical practice.
To ex utero who said:
"I'm pleased that you are down to 26 weeks, there was a time when you were at 28 weeks. "
You are mistaken. There was never a time when I was "at 28 weeks." These are not my numbers, in any event, they come from AAP and ACOG and a variety of community ethics groups. I think they mark a reasonable biological boundary (see MRI data by Terri Inder and others on <26 weekers.)
Although this line may be considered somewhat arbitrary (outcomes aren't so great at 26 weeks either), I think it is a line that many reasonable people can agree on.
It marks a line below which the majority of outcomes (combined death and severe disability at age 2 roughly equal, or exceed, 50%). And as we know from EPICure, the true disability rate is much higher (about 80% by age 6).
***
As for the need to determine accurate dates:
It has been shown that OB information is far more reliable than neonatologist-generated delivery room data, and that neonatal DR evaluations are off, typically by 1.3 to 3.3 weeks.
[Donovan et al. Inaccuracy of Ballard Scores before 28 weeks' gestation..J Pediatr 1999;135:147-52].
Additionally "how the baby looks" in the DR (or even in NICU evaluations) in <26 week babies has not been shown to be predictive either of mortality or severe handicap. [Singh et al. Pediatrics 2007; Resuscitation in the Gray Zone of Viability: Determining Physcian Preferences and Predicting Infant Outcomes." Pediatrics 2007;120: 519-526.
Also see Steven Leuthner's excellent article on "Fetal palliative care" in Clinics in Perinatology 2004;31:649-665] for more on the evidence favoring OB evaluation over neonatologists' evaluations.
***
Maureen Hack's data is based on a small number of <1000 gram babies (about 65) many of whom were 26 weeks or above.
I think we need a bigger data base which separates out 25 weekers to address your belief that these babies are doing well enough that parents should not have choices on resuscitation.
Meanwhile, if you can give us Hack's exact mortality and morbidity figures for 25 weeks (and the "n") I would be most appreciative.
***
You mention the law, which also seems to mandate that every fetus with a beating heart be subjected to full scale resuscitation. This is almost never done, as you know.
Neonatologists cite "the law" to overrule parent wishes selectively, based on the neonatologists'and hospitals' interests more than those of the baby or family (IMHO).
Other neonatologists (Kaempf and his co-workers, for example) believe that "no resuscitation" at 25 weeks is a reasonable option, and they allow it. They are looking at the same set of laws you are.
What I would like to see are birth centers where neonatologists are not called to the delivery if parents and their obstetrician have decided that their <26weeker will not be resuscitated.
I think this is the only way parents can take any kind of control over a process that can profoundly change their lives forever.
Because neontologists have the luxury of walking away, their preferences should not predominate.
To Chris and Vic who asked whether googling Prematurity would bring up any information deeper than the sugar coated stuff we see in the media. There are actually some very good sites with information on prematurity ---see the links on my blog breech mama.
As for the suggestion that we put ourselves into the premature infants shoes for a moment, I thought that was extremely POWERFUL and I think Helen should include some mention of this, whether it be in the parent education pamphlets of the education of the broader public, OBs, Neos, and fertility specialists around the country.
And regarding your summary of how we might "reach those who
1) don't read;
2) have put themselves into the hands of experts and allow those experts to do all the thinking/worrying"
I want to add that some of us don't read the mainstream sites on what to expect not because we don't read but because we are reading entirely different literature---ie. the natural and alternative birthing literature which makes even less mention of prematurity and the NICU and outcomes that the mainstream literature.
Given that half of all preterm labors have no explanation and are thus not labeled 'high risk' to begin with, I also think we do need to get out to the broader population of pregnant women. So while I suggest we start by educating high risk women, I also believe we need to consider all pregnant women---and here I would agree that childbirth classes are too late and that making women with suspected preterm labor go into a NICU is not that helpful. I avoided visiting the NICU when I was in the hospital on bedrest because I thought it would send me into full scale labor. So I sent my husband instead. I wish I had had access to more information at the time and that the Neo who did give us some information on outcomes had some handouts, articles, etc. Why is it assumed that a pregnant woman on bedrest can't read? Why was I not told about the computer down the hall where I might have downloaded medical articles? This, too, at an Ivy League Teaching hospital where the computer was bought for parents whose kids were in the NICU.
I just think that people assume women are going to get this information, but not all of us immediately jump to reading Pub Med when we are sick or suddenly in preterm labor. I certainly did NOT.
I'd like to clarify and insist that although I was not reading enough on prematurity while I was pregnant and had no access to a computer while on bedrest with PROM, I do wish I had had more information. It is ironic so many docs seem unwilling to give patients medical articles, especially for those who seem eager for more information.
on Helen's suggestion #8. I think it is imperative that hospitals report their individual resuscitation protocols/standards and their individual NICU outcomes, as outcomes can vary considerably from hospital to hospital.
Helen, do you have the reference for the study showing that smaller NICUs had worse outcomes than larger NICUS? Didn't this study also show that the mere presence of a NICU alone did not necessarily improve neonatal outcomes---because smaller level II NICUs were associated with more NICU admissions but not necessarily better standards of care or treatment? I think Shannon Brownlee mentions this in her book, Overtreated, which I highly recommend. Much of what Brownlee argues about other specialties holds true for neonatology and obstetrics---namely the surprising lack of evidence-based medicine adn the incidence of treatments that often have have little or no benefit for the patient.
TPE wrote:Lastly, I feel the largest injustice being done to all future parents is the lack of follow up studies. I feel each NICU should be required to track (to the best of their ability) each and every preemie born. The follow up should encompass more than physical abilities and the evaluations should be also filled out by teachers and even psychologists that treat the child. We also need to let the parent (of the child in the follow up research) know that they need to be honest.
This sound good in theory, but how often would the evaluations be, and how long would the child be followed? Most parents that leave the NICU have a goal in mind of raising the most "normal" child possible. If indeed their child grows, thrives, and begins to blend in with his Term-peers, then the parents are going to let go of the preemie-ness. They are not going to want an annual or semi-annual reminder every year for the next 18 years. I would venture to say that most of these families would drop out of long term studies, thus seriously skewing the results. On the flip side, if you have a parent that has a child with long term issues, they already have more than enough on their plate. One more lengthy appointment may tip the scales as one appointment too many, especially when that appointment won't have any bearing on their child's well-being. I agree that this data NEEDS to be collected, but I don't think that "required" NICU follow-up visits will work.
To future of hope:
The issue of who returns for follow-up has been extensively studied.
The ones who do not return for follow-up are the most severely handicapped. Their exclusion from the official statistics seriously distorts the official data(which, heaven knows, is bad enough) toward optimism.
To Buddhist mama who asked about the level 2 NICU vs. level 3 outcome data:
I think the study was done in California by Ciarin Phibbs. I have it somewhere and will try to get back to you on it.
To 20somethingmama, who suggesting taping, rounds and charting participation by parents, etc.
YES!!!!!
And have a very Merry Christmas, too, and a Happy 2008!
I was thinking about the family life classes in high school--Joan's suggestion.
What if the instructor presented a case study, like one of our stories as preemie families. The high school students would then be asked to exercise their analytical and critical thinking skills to make choices . . . not just one choice (resuscitation or not), but a cascade of choices that extend into the preemie's future. They would be asked to anticipate the implications of their choices into the child's future--the "fall-out," if you will. They would be asked to plan . . . (This can also be done in a role-play format.)
For example,
What would you do IF . . .
you were married, pregnant, and the baby was early? How early? 14 weeks early.(Students ask/need to learn what a 26-weeker is like.)
What if the wife feels differently from the husband? Could this be a threat to the marriage?
Who do you trust and where do you go for information and advice in your dilemma?
What will happen to your job/career if the wife could not return to work for a period of time, because the daycare won't accept a premature baby who has gone home on a monitor? Who would take care of this baby? Wife? Husband? Grandparents?
What if you had to repay medical bills totalling a half-million dollars? What kind of financial plans would you need to make?
What if this child has learning disabilities? ADHD? Cognitive disability? Cerebral palsy? Visual impairment? Asthma? How will you, as a parent, cope?
Etc.
Chris and Vic
Helen,
Do you know what are the best tools to predict how < 26 weekers will do? No doctors/nurses/anybody would ever answer this question for me.
I am aware of Dr. Hack's research.
The hospital my son was born at, their viability is 24 weekers, and/or 500gm. Additionally, sometimes depend on how the baby look when it comes out, i.e. crying, kicking, etc. Thank you for bringing this important issue out.
Monica
Chris,
Excellent ideas. Your skills as an educator are so apparent!!
I think this can also be done in various college courses too, tailoring the focus to the theme of the course. Psychology, biology, etc.
And, the idea of letting the students use critical thinking to draw their conclusions is an excellent one.
In order to take it one step further, maybe a parent of a preemie could be a guest speaker.
I think I'm going to call our local high school after the break.
I have been following this discussion and have been trying to figure out what I could add. Helen, I think your ideas look great.
While reading Buddist Mama's posts, I was reminded of my own hospital stay. The head NICU nurse kept trying to get me to see the NICU. I just couldn't do it - I had been in a NICU before, when my nephews were born at 26 weeks. (Chris - I think they might have been at your NICU.) I knew that was were my baby was headed, but all I wanted to do was focus on staying pregnant. The Neo's did give me a pamphlet to read. It took me probably 2 weeks on bedrest before I opened the materials up. I would read a short bit, cry, and then put it away. Same thing with the internet, I would go searching for "placenta abruption" and preemies at ____ weeks (depending on how far a long I was). I could only read any information for such a short amount of time and then I would freak out.
I think the information needs to get out to the general public way before they are facing a premature birth. I just could not "deal" with reading about prematurity when I knew I was going to have a preemie.
I think about all the attention autism is getting right now. It seems like every talk show has done several specials on autism. And celebrities are out there talking about the signs and the therapies. They are not sugar coating the effects autism has on a family - yes, they show the rare case of a child who has "recovered." But for the most part they show an accurate picture of autism. Man, we just need Oprah :).
This is probably going to sound aweful... When I ended up in the hospital at 23 weeks and 5 days with placenta abruption, I wished that I had miscarried. I knew that I didn't want to have a micro preemie. I ended up having my baby at 28 weeks and 5 days. We feel like we are lucky that he wasn't born any earlier.
Okay, enough rambling. Helen, good luck with your article.
Carrie
To Kathy who said
"Now, I think that I were to have another baby, that period of 22-32 weeks would be a time of great anxiety for me."
I have two girls - the oldest was a 36 weeker, and was called fluke. The next was a 31 weeker who has had a little tougher time than anticipated with her lungs and development. With number three, I was pretty much terrified from 22 weeks until about 34. I went into PTL at 32 weeks, but it was stopped. The whole time, I just kept thinking - why did we do this? I can't handle the NICU again...
When we got pregnant with number three, I told my husband that I wouldn't resus before 26 weeks. Who knows what we would have actually done in the heat of the moment though.
-Kristie
To Carrie who said: "This is probably going to sound aweful... When I ended up in the hospital at 23 weeks and 5 days with placenta abruption, I wished that I had miscarried. I knew that I didn't want to have a micro preemie."
***
No, Carrie, this doesn't sound awful to me. It is what so many parents feel, even if they can't always bring themselves to say it out loud.
I'll never forget the phone call I received from a mom when I was interviewing parents for The Premature Baby Book many, many years ago.
Her young preemie daughter had survived the NICU with hydrocphalus. She knew my son had it too.
She started off telling me what a blessing her daughter was, how well everything was going, and how supportive her family and church had been through all this.
I listened to her, like a therapist would, I suppose, trying not to color the conversation in any way.
As she went on, her story changed. She began to admit that things weren't quite as great as she had said in the beginning. By the end of the very long conversation she was in tears saying "My family and the people at church just don't understand!" Then she said, "There are so many times I wished my baby would just die. Please, please, tell me you thought the same thing, too."
I told her I completely understood, and she seemed *so* relieved.
I often heard the same thing from other parents, once they trusted me, and it always seemed comforting to them to hear that other parents in their situation had this feeling as well -- that it didn't make them bad parents, only human beings. They all, BTW, have gone on to become excellent parents to their surviving preemies, or, in several cases, to the full-term children they had after their preemie did, in fact, die.
(This despite having often been labeled "bad parents" for their feelings by NICU staff!)
Rest assured, you are not alone. We have (almost) all been there, too.
Carrie - your idea about getting Oprah on board as with the focus autism is now getting - a great idea. I understand that as a teenager, Oprah had a preemie that died - I wonder if this issue would hit too close to home for her?
It's funny that we're talking about Oprah giving autism more exposure as a good thing. My dear friend who has a son on the spectrum and her network of autism blogging friends were all horrified at the way it was portrayed on Oprah. Every time someone furthers the stereotype of an autistic child as being totally cut off emotionally, or talks about diet as a "cure" instead of a "treatment," their lives are made sooo much more difficult.
I think that prematurity, autism, and probably many other issues that hit children and families are far more complicated than the media can portray. It's given me a new sense of skepticism and sympathy. Any time I watch a segment on a talk show and feel like I "get it," I just assume that it's really far more complicated and messy than it seemed.
I suppose this is where some of us have been running into conflict with popular conceptions about prematurity. People watch uplifting shows about high-order multiples or miracle babies and feel like they've been educated. When those people are our friends and relatives who don't understand why we're so worried about our kids or go on to have their own preemies with unrealistic expectations, it's a problem.
I guess talk shows have to stay upbeat, and you'd never catch me going on national television talking honestly about the dark side of prematurity! If we can't even complain within the preemie community, or our families, I certainly wouldn't want to expose myself to judgment on television!
I actually have written to the Oprah show on more than one occasion practically begging her to do a show on preemies, I too read somewhere that she had a preemie...I though would not have a bunch of negative stuff to say regarding my sons issues as of yet, I do think there needs to be more awareness but as I have plainly stated already I think some are so full of negativity that it seems there are no "good" outcomes when it comes to a early delivery..Someone asked about googling prematurity, I did this while on bedrest and I actually found more not so good stories than I did good ones or the "media miracles" that some claim are the only stories out there..
To Kathy who said "If we can't even complain within the preemie community, or our families, I certainly wouldn't want to expose myself to judgment on television!"
****
I have been on television a fair amount, and I have to say people in the general public have been *incredibly* understanding and supportive.
Most people who are not personally invested in this (ie, people who are not parents of very young preemies or NICU staff) understand exactly what we are saying and they are sympathetic.
As for autism coverage that several people have mentioned, when the connection is more widely made between prematurity and autism (and the evidence is mounting), we will get more of a hearing. So many parents of preemies are receiveing autism diagnoses for their children!
The link to the article on level 2 vs 3 NICUs is here.
It is Ciaran Phibbs et al from the N Engl J Med. 2007 May 24;356(21):2165-75.
Helen,
I went back to some of your old comments on other blogs just to see if my memory was failing me about the 28 weeks. You said:
You are mistaken. There was never a time when I was "at 28 weeks."
You were right. It wasn't 28 weeks....
Below is another quote from one of your comments on my blog in which you appeared to be advocating for parental control of resuscitation as far up as 32 weeks gestation.
"in Walther et al._Early Human Development_ 2000;59:175-191, only 10% of a national cohort of 26-32 weekers were considered handicapped in early childhood, but by adolescence, 40% were deemed unable to live independently because of so-called "mild" problems-- problems like autism.
Most parents I talk to think that disabilities which leave their children unable to function independently as adults are severe, no matter what neonatologists call them. And it is the *parents* who should be determining the outcomes of interest in these studies."
But as I read it now, I suppose you could say you were being specific about parents having a say in defining outcomes in studies (but you seemed to be inferring that control of outcome definitions would eventually lead to limitation of resuscitation at those ages as well).
However, I also found this quote on Neonatal Doc's blog as you were speaking about Terry Inder's study regarding outcomes:
"This further strengthens the case for 26 weeks as a sort of natural boundary that should be crossed only with fully informed consent of the family."
The things is, both studies were outcomes studies in survivors. The first is dated and occurred in an age when steroid use was common and the latter showed brain injury but at the time did not have correlating neurodevelopmental impairment data to go with it. So you've quoted studies that were either dated or limited in their appproach and then come to some fairly broad conclusions in the past. I think it will be great for you to write things down for a medical journal at this juncture in time. It will force you to take a clear and concise position. If you'll tell me which journal it's going to be published in, perhaps I'll send in a letter to the editor. You once suggested that one of our particularly venomous blog comment strings should be published for posterity so that people could take my measure as a doctor. Perhaps I could include the web address to some of the comment strings on Neonatal Doc and my site so readers could come to their own conclusions about your consistency and objectivity?
I wouldn't do that to you (even though you once threatened me with something similar). My point is that those of us who have been tracking you in the past have perceived mixed messages (whether rightly or wrongly on our part). If you are now firmly going with 26 weeks as your limit at which parental consent must be required for resuscitation, I really do think that is a good thing for the purpose of future discussion and debate. Certainly, it will be much more palatable within the medical community.
Sincerely,
To ex utero,
I'm not exactly sure what you are trying to say here...
I have always been quite clear that outcomes are not good at higher gestations of prematurity, but below 26 weeks they are so bad, and the treatment so (arguably) cruel, that this was my "line in the sand" (as well as that of the AAP and ACOG, etc.)
I stand by what I've said on the blogs, and I would be happy to have you reference my statements for all to read or reread.
Merry Xmas,
Helen
All of my babies, all 6 of them, (one deceased) were IVF babies. I struggled with “overruling” God who apparently did not want me to have children.
The first were triplets, much to the chagrin of my doctor. He prides himself on giving parents ONE baby with the occasional twins. Triplets were failure. DH and I decided that triplets would be the most that we would do. If you wonder, given my particular fertility problem, 4 embryos were implanted. Each time, 4 embryos were implanted. The second time, one took. The third time, 2 took.
I devoted myself to the pregnancy. There was no Internet available at the time. Windows hadn’t even been invented. We were still using DOS. I read all I could knowing that they would come early. My goal was 36 weeks. At 21 weeks I was in labor. At 22 one baby died. He was born that day. His brothers came 17 days later at 25 weeks. I am officially a “case” at our hospital. Or I was, maybe I’m not anymore.
I was sure that God would give me a miracle. Even after one baby had PDA, NEC, ROP etc. Ironically the one who is now severely mentally impaired did not have an IVH. His MRI was entirely normal. But my “almost” normal child had an IVH, Grade I. I will say the there was NOTHING that the doctor could have told me that would have changed my mind about resuscitation. I would have the miracle children. God wouldn’t give me handicapped children after making me lose one, would he?
However, that was MY decision. And I respect any parent who makes any decision regarding resuscitation. You want to resuscitate your 21 weeker. Go for it. You don’t want to resuscitate your 28 weeker, go for it. As a PARENT, and the one will be responsible for the care and feeding of this child, it should be your absolute choice. I don’t care the gestation. BUT you must have informed consent. You must know the good, the bad and the ugly. No pussy footing around. If you know that you have almost a 100 percent chance of having a severely disabled child and you are OK with that, then it is your choice. But, if you can’t live the idea that your child might have “issues” then the DOCTORS must respect your choice. We let them play GOD and they are not. You know the difference don’t you? Between God and a doctor? God doesn’t think he’s a doctor.
I loved our neo but I now know that he did not handle things as he should. And, my one child probably would have had a better outcome if the neo had not insisted on certain “experiments.” If neos are so gung ho about experimentation, they should use their own children. But as the studies show, most wouldn’t resuscitate their own micro preemies.
A big yes to Number 4 and to universal health care.
HH said-
"but below 26 weeks they are so bad, and the treatment so (arguably) cruel"
This is not my experience and I AM a mother of a micro preemie 24 weeker, you are just an observer. My child is not "so bad" and her treatment was not "cruel," not even close to "arguably cruel. I get your point, your mission and the awareness you are trying to bring to the preemie community. But until you walk in my shoes and have your own micro preemie, please do not made broad stroke comments. Your son was not a micro preemie and he is much worse off than my 590g daughter. I really don't want you speaking on behalf of the 26 weeks and under group. Stick to what you know and experience personally- that is not as a parent of a micro preemie. You are trying to convince parents not to resuscitate babies born before 26 weeks. You are on a soap box that isn't yours..but MINE! I had to make that heart wrenching decision while you sit by and write articles from the cheap seats.
Come spend a day in my house, with my family, my 24 weeker, then you will be qualified to discuss what it is really like!
Anonymous 8:10 AM,
If you are happy and your child is thriving, then I am happy for you and your child.
I do not base my views solely on my personal experience, but on the well-documented experiences of others. I have been through this process with many micropreemie families who do not share your perspectives, and, having been asked to do so, I am trying to give these families, as well as families like yours, a voice.
I am for choice -- your choice as well as their choice.
I have a prematurely-born child with serious problems, typical of those of all-too-many micropreemies. My son had to undergo cruel NICU treatment (unanesthetized surgery, anyone?) and suffer levels of pain and damaging treatments similar to those that of most micropreemies.
We also had to make wrenching life and death decisions for our son, so I do have experience with the issues -- if not with your child's precise birthweight. Believe me,I am not writing from the "cheap seats."
This article is not a "soapbox" that I somehow took from you. I was invited by the editor of the publication to write it. I did not in anyway solicit this task. And if you are feeling deprived of a soapbox, please start writing up your experiences and send them off. You are as free to publish as the rest of us.
Helen,
I have nothing of value to add except Kudos. Thank you. Thank you for giving a voice to parents who cant. I dont have the time, energy, nor the ability to write.
To Anon 8:10--
My son is a micro, born at ~25 weeks ~560 grams. I AM qualified to discuss these issues and I appreciate Helens attempt to show the masses there IS choice. That most micro outcomes are NOT the ones we see on TV. The preemie groups I frequent (IRL and on the internet) all bear this out.
I love my son. At the same time people NEED to know what can/does happen. That sometimes the most compassionate thing to do is allow a child to die in peace, with dignity.
As far as the education, etc I think high school is a good place to start. When my son was in the NICU for 4+ months many of his neighbors (most also micropreemies) had parents that were early to mid teens. I cannot fathom how hard that would be. There were several instances where the clear indications were that their children were suffering and letting them go would be the most compassionate thing to do. Most said no, my child will be fine. My aunt, cousin etc knows a baby born 20 years ago smaller than my baby who is ok.
Onward Helen, the word needs to get out. The norm and not the exception should be John Q Publics perception. If anyone has evidence, not ancedote, that outcomes have improved, please by all means share. If not then the truth should be shared.
I think the point that some of us are trying to make is that Helen ALWAYS is so negative especially when it has to do w/26 wks and below..I too have a 26 wkr and his NICU stay in no way was cruel..He was always put under for his surgerys and the dr's were very upfront and honest w/us on my sons possible outcome..But to go and as one other mom said basically speak for others is wrong, all parents should have a CHOICE and for you to go forth w/how inhumane it is to save a preemie under a certain gestational age may one day end up robbing a mother of a preemie born at 25 wks the chance to one day take her child home..Do you spend day in and day out researching this just so you can be a "voice" If your sons outcome would have been different would you still feel the way that you do?
Thank you microsmom,
It is important that your perspective (and mine, FWIW) not be shouted down by others.
We all need to be heard, we need honest infomed consent, and we all need choices.
Gratefully,
Helen
I was thinking about the class for high school students and was thinking of the answer to the question that each student should learn: what are my rights, or what will my rights be, if I am in a situation, threatened with a very preterm birth for my child - and I choose not to resuscitate - or I choose to let the baby be born and nature take its course without any medical interventions?
In that classroom I would need to know what my rights are. I would need to know that I have the right to refuse medical interventions for my child and that I have the right to refuse measures toward resuscitation. I would need to know that when I am in the hospital and I state my wishes regarding the welfare of my child, my choices will be respected and supported.
In reading posts from Helen and Ex Utero it became clear to me that the law is not clear.
Ex utero said: "The best we can do in these situations is form an honest relationship in which we partner with parents, do the best to assess their wishes and do the best to follow those wishes. But parents have to understand that by law, a viable child also has rights. Until that law is changed, physicians are in a tight spot with some of the positions that are sometimes suggested."
Helen says: "You mention the law, which also seems to mandate that every fetus with a beating heart be subjected to full scale resuscitation. This is almost never done, as you know."
I don't know enough about the law but it seems to me that, at this point in time, there are no clear cut laws to support a parent's choice to refuse medical interventions.
Does that mean, if we, as a nation, teach this "lifeskills" course to our young people, we will need to teach them that, essentially, they have no clearly defined and supported rights in this particular context. We can not say for certain - yes, you have the right to refuse this treatment for your child and your choice will be accepted and supported by the healthcare professionals handling your pregnancy.
We will have to teach our young people that when they walk into a hospital ready to give birth, they will walk into a situation where laws and values are nebulous and unclear, where many competing agendas determine their birth experience and where their own needs, desires or wishes may be subjugated to other competing agendas and values.
We will have to teach them that, at this point in time, they do not have clear, undeniable and inalienable rights in childbirth.
Joan
To Joan,
Sadly, we will have to teach young people, if we are to be completely honest with them, that if they have a background in medicine and/or law they will be better able to navigate the system to get their wishes honored. Either that, or they may need to come into a preterm birth situation with a lawyer at their side. They may also consider learning the names of late-term abortion providers who, I have also been told, provide their services to many NICU staffers when they or their family members go into preterm labor. I know of well-informed families who have checked out of hospitals with hightech OB/NICU to avail themselves of this service. In Israel, there is a movement among some neonatologists to inform parents facing extremely preterm birth of this option.
Some hospitals in the US right now offer choices about resuscitation at 25 weeks and even in some cases, I am told, at 26 weeks. Much may also depend on the personal philosphies and motives of the people on call during an extremely preterm delivery. But very few people know about this in advance so they could seek out like-minded facilities and doctors. Unfortunately, advertising these facts would bring out the "save-Terri-Schiavo" crowd, so I fully understand why they don't advertise.
But in an ideal world, what I would like to see are two hospitals side by side, or at least in the same city. One openly offers hightech preterm care, delivery, and NICU, the other openly offers low tech care during preterm labor and delivery, and includes the option of palliative care in case the baby is born extremely premature or otherwise marginally viable.
Then inform prospective parents of the practices and likely outcomes at each hospital and let them "vote with their feet."
It happens with patients in the US too. I saw a woman who was 22 wks along and in PTL informed that they could either try everything known to man to keep her pregnant 2 more weeks, or terminate if that was their wish. There is no resuscitation before 24 wks at the hospital where this happened, and late term abortion is legal.
Found this on the web and think it is very good. I think I would have liked some info like this before delivering my 24 weeker. Wouldn't change the choice I made but would have been helpful nonetheless.
-Alison
AN INTRODUCTION TO EXTREMELY PREMATURE BABIES
This note is intended to help parents who may have an extremely premature baby, a baby born 22, 23, or 24 weeks into a pregnancy. Although we understand that having an extremely premature baby is one of the most difficult experiences imaginable, the tone of this note is straightforward and dispassionate, with the goal to be as clear as possible.
This note contains a lot of information. It can be hard to take it all in with just one reading. This is especially true with the inevitable stress that comes with being in this situation. Also, some of the drugs often given to a mother in premature labor may affect her ability to think clearly. For these reasons, you may want to read this note more than once. You may have to make one of the hardest decisions of your life based partly on what you read here.
This note emphasizes the chances of an extremely premature baby's survival and the chances of various degrees of permanent handicaps for the babies who survive. Parents of extremely premature babies must understand these things, because the law and our society in general have decided that parents have the right to choose whether or not intensive care is the best thing for their extremely premature baby. Deciding whether or not to choose intensive care for your baby is the "hardest decision" mentioned in the previous paragraph.
The alternative to intensive care is hospice care, where the emphasis is on comfort and being with loved ones, rather than on curing disease. For an extremely premature baby, this usually means being held by parents, being kept warm and, when appropriate, being given medications for sedation and pain relief. Beginning hospice care is often referred to as "withdrawing intensive care" in this note (and elsewhere).
Most of this note is about the negative things that can result from an extremely premature birth. The negatives are emphasized because most people do not know about them. We assume you already know the many positive things about the very existence of a child, the things that make up every parent’s hopes for their baby.
Before 22 and after 24 weeks
Babies born before 22 weeks into a pregnancy virtually never survive. Therefore, we provide hospice care for such babies, unless there is a significant chance the baby is really more mature than we thought.
At 25 weeks and beyond, although much risk still remains, the chances that a baby will survive and be healthy in the long run are better. Therefore, once the 25 week point has been reached, intensive care is given at least initially unless there are special circumstances.
22 week babies
Nationwide, most 22 week babies are given hospice care. Very few 22 week babies have survived. Our estimate of the chance of a 22 week baby surviving with intensive care, 10%, really is just an estimate, because we have not yet succeeded in sending a 22 week baby home alive here despite several attempts. Most of those 22 week babies died after the brain was badly injured by severe bleeding into the brain and intensive care was withdrawn.
Before we begin the intensive care of a 22 week baby, we want to be as sure as possible that the baby's parents are fully aware of the high odds against the survival of such a baby. Also, little is known about the outcomes of such babies, except to guess that the risk of handicaps is higher than it is at 23 and 24 weeks.
Survival at 23 weeks
Nationwide, many 23 week babies are given hospice care. However, we have given intensive care to most, but certainly not all, 23 week babies born here since 1990. About 50% of 23 week babies given intensive care here survive. About half of the deaths have followed withdrawal of intensive care after severe bleeding into the brain.
An individual baby's chance of surviving may be much different from that 50% overall figure, however. These individual differences are mostly due to four issues:
1. the time into that week (a baby barely 23 weeks is less likely to do well than a baby almost 24 weeks),
2. the baby's gender (girls tend to do better than boys),
3. multiple pregnancy (singletons tend to do better than individual babies from multiple pregnancies), and
4. whether there was time before birth to give the steroid (betamethasone, also called Celestone) shots to the mother (which helps the baby's chance of surviving and avoiding severe brain bleeding).
Depending on these factors, we might estimate an individual baby's chances for survival to be anywhere from 25% to 75%.
Survival at 24 weeks
At 24 weeks, most babies are given intensive care nationwide, but some are given hospice care. We have given intensive care nearly all 24 week babies born here since 1990. Overall, about 75% of 24 week babies given intensive care here survive. As noted in the last section, there are reasons that an individual baby's chances may differ from the overall figure. Depending on those same factors, we might guess an individual baby's chances for survival to be anywhere from 50% to 90%.
Long term health and handicaps at 23 or 24 weeks: "Quality of life"
It is important to keep in mind that there is much more to this difficult situation than survival.
Most extremely premature babies who survive have at least some degree of handicap. The problems related to the brain are by far the most important, because brain injuries often affect what is most human about us, and brain injuries cannot heal themselves.
The outcomes of babies who have gone home from the newborn intensive care unit (ICU) are usually divided into four categories, which will be described in the next four paragraphs. At 23 and 24 weeks, each of these four types of outcomes is nearly equally likely, so there is about a 25% chance your baby will be in any one of the four outcome groups, presuming your baby does survive. Please understand that some babies within each group will not exactly match the description of that group. Our intent here is to give you a realistic picture of the spectrum of handicaps faced by extremely premature babies, without going into all of the many possible outcomes.
1. Children in the no handicap group have intelligence and physical abilities within the normal range, and they perform normally in school when they are older. Even in this group, however, children may be physically small or need to wear glasses to see well.
2. Children in the mild handicap group have intelligence within the normal range, although it is usually somewhat below average. They also usually have some sort of problem that makes things difficult for them in school. Attention deficit disorder is a common example. Children with attention deficit disorder are easily distracted, and may be hyperactive. Other problems found in this group include learning disabilities, language problems, difficulty with math, and social/emotional issues. Many children in this group are also somewhat clumsy, but are able to do what they need to do. Some of these children will need special education in school.
3. Children in the moderate handicap group have borderline intelligence that falls between "low normal" and mildly mentally retarded, and also often have mild cerebral palsy. The mild cerebral palsy means these children have permanent difficulties with muscle control (such as awkward walking or difficulty with handwriting), need physical therapy, and usually begin to walk much later than most children. Vision may be somewhat impaired, even when using glasses. Most children in this group will need special education in school. Many children in this group will not be able to live independently as adults.
4. Children in the severe handicap group are mentally retarded and/or have severe cerebral palsy, usually to a degree that keeps them from ever walking without assistance. Children in this group also tend to have the most serious problems with their vision. While blindness is quite rare, vision is often impaired enough to be a significant problem, even with the best possible glasses. Virtually all children in this group will need special education in school, and most will not be able to live independently as adults.
We all fear the extremely handicapped outcome, the child who grows up unable to communicate, and perhaps not aware of what is happening around him or her. Fortunately, even when there is serious bleeding into the brain, such extreme outcomes are rare. Most of the children in the severely handicapped group are capable of carrying on at least a simple conversation.
The important point of this section is that long-term outcomes are not simply a matter of being either perfectly normal or extremely handicapped. On the contrary, the outcomes of extremely premature babies cover a wide spectrum. Few will be truly normal, but very few of the handicaps we see are as serious as our worst fears.
Predicting outcomes for extremely premature babies as a group
An equal chance for each of the four outcome groups, as given above, is the best guess we can make at this time. It is a guess because, to really know how a child will do, we must wait until that child is at least eight years old. It is only around that age, when the child is working with letters and numbers and is in a more complicated social setting, that we can finally begin to estimate a child's adult potential with reasonably good accuracy.
Because we must wait eight years to know how a child will do, we are by necessity basing our guesses for the future outcomes of babies born today on the current outcomes of babies born eight or more years ago. However, newborn intensive care has changed a great deal in the last eight years. Extremely premature babies are surviving more often now than they did eight years ago and before. It is tempting to assume that today’s survivors will also have better outcomes than the survivors of years ago.
However, the trend over time has been that the percentage of those extremely premature survivors who are handicapped to varying degrees has remained fairly constant as their survival has improved over the years. In other words, there are more normal survivors now than years ago, but there are also more handicapped survivors. It is likely that this trend will continue, so our outcome estimates for today's babies will probably be fairly accurate.
Predicting outcomes for individual babies
Of course, you do not want to know how other babies similar to yours will do as a group. You want to know how your own baby (or babies) will do. Unfortunately, our ability to predict how an individual baby will do in the long run is rather poor. This uncertainty is one the most difficult things about this whole situation.
Babies can be vigorous and very healthy as fetuses and yet have great problems after birth. This can happen because life outside the womb has very different demands than life within the womb.
It is generally better when a baby is vigorous at birth, but vigor at birth is still a poor predictor of the later health of individual babies. Even extremely premature babies who need CPR at birth have outcomes not much different from those who did not need CPR.
The same is true for the overall health of a baby during the time spent in the newborn ICU, with one exception that will be discussed in a moment. It is generally better when a baby has minimal difficulty with immature lungs, blood pressure, infections, and the many other problems that can happen after an extremely premature birth. However, there are too many exceptions (in both directions) to rely on overall health to predict the outcomes of individual babies.
One problem that does predict handicaps at least relatively well is the problem of severe bleeding into the brain, which happens to some extremely premature babies. There can be small amounts of bleeding in the brain (called grade 1 or 2 bleeds) that have little or no effect on a baby. On the other hand, severe bleeding in the brain (called grade 3 or 4 bleeds) often cause significant permanent handicaps.
When severe bleeding does happen, it almost always happens in the first three days after birth. That is why we look at the brain with ultrasound after the first three days. If no severe bleeding is seen, that is a major hurdle successfully cleared. If severe bleeding is seen, the chances for severe handicaps are much greater. The likelihood of needing surgeries (and the additional pain and inconvenience that goes with them) later for hydrocephalus (excessive fluid accumulation within the brain) or for complications of cerebral palsy also greatly increases if severe bleeding occurs.
Even though the brain ultrasound is probably our best predictor of permanent handicaps while a baby is in the newborn ICU, it is still far from perfect. Some extremely premature babies who do not have severe bleeding in the brain have severe handicaps later in life. A few babies with severe bleeding manage to be fairly close to normal later in life.
In general, we are better at predicting severe handicaps, largely because most of those babies have severe bleeding in the brain, or perhaps a rarer problem (called periventricular leukomalacia) that shows up later during the hospitalization on other brain ultrasound tests. However, we have no good way of predicting which babies will be normal and which will have mild or moderate handicaps.
Other medical issues
So far we have concentrated on survival and brain-related problems, because those issues have the most permanent impact. There are other health issues that must be mentioned. Infections are not uncommon, and can cause a baby to become much sicker. Some babies die from infections. The ventilators that help babies breathe and keep them alive also damage the lungs. This can lead to problems with wheezing or pneumonias through the early childhood years or perhaps longer, and may require more time in the hospital. Many extremely premature babies grow poorly, have feeding problems, and/or have difficult dispositions. Parenting an extremely premature baby can be a difficult, frustrating experience.
Multiples: Twins, triplets, or more
Multiple pregnancies make this already difficult situation even more complicated. For example, if one of a set of triplets is in serious trouble before birth at this extremely premature stage, do we do a c-section to try to save one baby? Doing so could endanger the lives of the other two. On the other hand, the death of one fetus can, in some circumstances, endanger the health of the remaining fetus(es).
Extremely premature multiples, as individuals, appear to have a somewhat lower chance of surviving than single babies. However, the chance of one of your babies surviving may be better than that of a single baby, but that is at the price of the lower chance that all of your babies will survive.
Suffering
Clearly, no one would choose to be a patient in an intensive care unit. It is a difficult experience at any age, although we do everything we can to keep babies comfortable.
Extremely premature babies are generally kept heavily sedated with morphine, which is also a potent painkiller, during the first three days of life, so we feel they are comfortable during this time. (We must admit that our ability to estimate how much pain a baby is having is imperfect, but we do give enough morphine to keep the babies very sleepy the great majority of the time.) Most babies are then allowed to awaken so they can breathe on their own without the ventilator.
Needle pokes are kept to a minimum by using long-term IVs and arterial lines. Long term IVs can be left in for weeks, sparing babies many pokes for standard IVs. Arterial lines also usually last for weeks, if we need them for that long, and are used for drawing blood samples, sparing babies many pokes in the elbow for drawing blood. Most extremely premature babies begin their stay in the ICU with an IV and an arterial line placed in the umbilical cord's blood vessels. This is good from the comfort point of view because the umbilical cord has no sensation at all, so placing these devices is virtually painless.
When a hospital stay goes smoothly, the amount of suffering experienced by a baby is relatively low. (We understand that the words "relatively low" are not very comforting when we are talking about your child's suffering.) Some complications that can occur later on in the hospitalization, on the other hand, may cause pain that is less manageable.
The effect on the family
There is always grief when a baby is born extremely prematurely because, no matter how well things go thereafter, the dream of a full term pregnancy and a big, healthy baby has been lost. As with grief that follows the death of a loved one, overwhelming emotions of all kinds are common. Please be aware that such extreme emotions are a normal part of grieving.
It is almost impossible not to feel guilt about the birth of an extremely premature baby. This is especially true for a mother, who often feels the premature birth is her fault, no matter how carefully she took care of herself and her pregnancy. In most cases of premature birth there is no fault, just bad luck.
When children grow up to have serious handicaps, it is hard to predict how the family will be affected. A seriously handicapped child can be a cherished member of one family, while another family may be torn apart by the experience. Other children in the family may feel neglected because of the greater attention a seriously handicapped child requires, but they may also learn important lessons in compassion.
Having a child with many medical problems can also be a heavy strain on the family budget. If expenses are high enough, financial aid can be obtained, but this is a time-consuming process for parents who are already pressed for time.
Even when things work out well in the long run, families can be affected greatly by the experience of having an extremely premature baby. Some parents experience something similar to the post-traumatic stress disorder seen in veterans who experienced extremely stressful combat situations. Some marriages fall apart under the stress. Varying degrees of depression are not uncommon, and may require treatment.
Breast milk
If you had not originally intended to breastfeed your baby, you may wish to reconsider that decision due to your risk of giving birth so prematurely.
There is some evidence that premature babies fed breast milk have fewer brain-related problems later in life than do those fed commercial formulas.
The intestines of extremely premature babies work rather poorly, and can cause serious illness. Some premature babies die of this intestinal illness (called necrotizing enterocolitis), while others may need surgery. Babies fed breast milk are less likely to develop this intestinal illness than are babies fed formula.
We strongly encourage you to use a breast pump so we can use your milk for at least the first two months or so of your baby's life. Both your obstetric nurses and the newborn ICU nurses can help you with this. During this time, your milk can be given to your baby through a tube that goes into the mouth and down to the stomach. Tube feedings are necessary at first because of poor swallowing ability. At about two months of age the risk of intestinal disease is much less, so, if you wish, we can switch to formula feedings around that time. This is also about the time we begin to give some feedings by mouth instead of by feeding tube.
Using a breast pump is a difficult process that is not always successful. We will help you any way we can.
It is usually the ability to take all feedings by mouth that determines when a baby is ready to go home. This usually occurs shortly before the original due date.
Blood transfusions
Extremely premature babies need many blood transfusions during their stay in the hospital. It is natural to worry about blood transfusions, but the risk of complications from blood transfusions is very small compared to the many other risks faced by extremely premature babies.
Options
The first difficult choice is whether or not to have a c-section if your baby is showing signs of being in serious trouble before birth. A c-section could save your baby's life or minimize brain injury. However, as with any baby born this early, the brain could be injured or your baby could die later on. A c-section this early in a pregnancy may mean that you will have to have any future babies by c-section. A c-section done this early may also add a small risk that your uterus could rupture in a future pregnancy, which is dangerous for both your future baby and for you. Your obstetrician can tell you if these latter two risks could apply to you.
Once an extremely premature baby is born, we may provide either intensive care or hospice care. This decision is best made before birth, because the intensive care of an extremely premature baby should begin immediately after birth, to minimize the chance of brain injury. There are no reliable ways to predict a baby's long term health at the time of birth, unless the baby's maturity is clearly much different from what we had thought before birth.
Beginning intensive care does not mean it must be continued no matter what happens. For example, we can reconsider continuing intensive care after the first three days, when the breathing and blood pressure problems are usually resolving and the first brain ultrasound has been done. If things are going well, it is reasonable to continue intensive care. If there is severe bleeding into the brain, on the other hand, hospice care might be considered.
If something serious happens later in the hospital stay, we may approach you again about continuing intensive care. That does not mean that we think hospice care is the right thing to do. It simply means that the outlook has significantly changed since our prior discussions.
Please do not hesitate to discuss your baby's care with us at any time, whether there has been a major change or not. Just ask your baby’s nurse if you wish such a meeting. Issues we might discuss include the following:
1. What are my baby’s chances for survival, various degrees of handicap, and long-term health problems now?
2. What medical problems are affecting my baby now?
3. How can I get more information about my baby’s problems?
4. How are those problems being treated?
5. What side effects could those treatments have?
6. Are there reasonable alternative treatments we could consider?
7. How can I get more involved in my baby’s care?
8. What can I do to best nurture my baby?
9. How do I find emotional or spiritual support?
10. Can the newborn ICU’s social worker help me with transportation, local housing, financial aid, or other practical problems while my baby is in the newborn ICU?
What will be done if there is no parental decision about intensive care?
For a variety of reasons, we sometimes do not have a clear parental decision about intensive care when a baby is born. In that case, we will usually provide intensive care to 23 and 24 week babies and hospice care to 22 week babies. This is done because, in our experience, those are the wishes of most people.
Conclusion
We have reviewed the chances for survival and varying degrees of handicaps for extremely premature babies. The emphasis has been on long term outcomes, because that is what is most important when choosing between intensive care and hospice care.
Perhaps it all comes down to this: If you were in your baby’s (or babies’) place, would you want a chance at life despite the medical problems, the suffering, and the likelihood of at least some degree of handicap, or would you feel that is a fate worse than death? We cannot know what a baby would want to do, but we do know that people eventually tend to share their parents’ views about such things. Therefore, it is a baby’s parents who are most likely to make the same decision that a baby would make if he or she were able to do so.
The choice is clear to some parents, to keep their baby alive if possible and deal with whatever problems may come. Other parents just as clearly feel they cannot put their child through those same problems. Both views are held by well-informed, reasonable, loving parents. Many parents see both views clearly, and find this an excruciatingly difficult decision to make. A mother and a father may have different views, an especially difficult situation with no easy solution.
At the risk of oversimplifying this difficult situation, there are basically three options here, at least for the first few days.
1. If the risk of mild and moderate handicaps seems too great, then perhaps hospice care should be provided at birth.
2. If the risk of handicaps seems acceptable, but you also want to try to minimize the risk of severe handicap and minimize discomfort, then perhaps your baby should be given intensive care and heavily sedated for the first three days and then the decision can be made.
3. If the risk of severe handicap is acceptable, then perhaps intensive care should be continued unless the situation becomes hopeless.
We are perfectly willing to talk with you at length to clarify and expand on the points made in this note. Your pregnancy may have special circumstances not covered here. We can talk about emotional issues that are not covered in this intentionally dispassionate note. If you wish, we can try to put you in touch with parents who have been in the situation you are in now. Ask your nurse to contact us if we can offer any help. We are here to help you and support you in any way we can.
We hope that your pregnancy can be safely prolonged to a point that is safer for your baby, to 25 weeks or even to 30 weeks. Even that best outcome is difficult, however. If only there was an easier way out of this frightening situation!
I think that the latest comment was very well worded, very much informing and to the point..There is a way to go about telling a parent all these things in a way that is not *harsh* and this is a very good example..As it said also it should be a parents choice, not someone who thinks that b/c they have had a not so good outcome that they need to put on a cape and go out and save a parent from entering the preemie world..there are good outcomes as well as bad, but in the end it should be the parents choice if they feel they are willling to take on some of the possible challenges of having and raising a premature child..
To Anon:
On quick first reading, I really like the tone of this message but wish it had covered outcomes a bit more thoroughly and -- as an evidence based approach would entail -- had included 25 weekers for decision making. (I am basing this on the most recent Vermont-Oxford data.)
26 -27 weekers, and other older preemies, should also have been discussed for context.
I think it is important for parents to note that many of the "mild" handicaps mentioned here can be severe enough to preclude independent life for the child. And that 50% of very low birthweight infants (<1500 g,. 26 -32 week gestation)eventually need special education in school -- so the percentage for <26 weekers is almost certainly much higher. Parents need a greater elaboration on what some of the "emotional" difficulties might be -- i.e., early onset schizophrenia, autism.
Parents should be told that almost all preemies have some degree of brain abnormality or injury, and that all children (according to Terri Inder's studies) born at 26 weeks or less show a uniquely diffuse and severe pattern of brain abnormality. What this means in terms of later functioning is yet to be fully determined.
Also I think it would have been good to have more discussion of the probable long term health issues for the child -- pulmonary, gastro-intestinal, growth issues, vulnerabilities to metabolic syndrome, etc. These may seem far away in the newborn period, but they can eventually have major impacts on many of our children.
The section on suffering underplayed the issue, I thought, and did not really touch on the controversies about use of morphine and other pain relievers for very preterm infants, or on the on-going suffering of medically compromised children and adults.
I don't think quite enough active support was given for parents to choose against resuscitation, but at least it was given as an option.
Otherwise, the tone is very nice, with some (but not nearly enough, IMHO) good information. It is a a very good start.
Where can it be found on the web?
Helen,
Here's the link:
http://members.aol.com/DDerleth/extreme.html
I read it somewhat differently than you and felt that there were many options and openings for discussing and choosing comfort care.
Overall, I thought there was a lot of good information; considering that many will be reading this and hearing this kind of information for the first time in the hospital.
As we all agree, the tone was very supportive and respectful of parental choice.
-Alison
I thought it might be interesting to compare the way physicians and researchers discuss the effects of preterm birth (in this case prematurity's effects on the brain) with the way it is discussed with parents.
The following contains a few excerpts from a paper presented by Dr. Bradley S. Peterson in 2003 to the NY Academy of Sciences. [Annals of the New York Academy of Science 2003:1008:219-237]
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Abstract:
"Premature birth can have devastating effects on brain development and long-term functional outcome. Rates of psychiatric illness and learning difficulties are high, and intelligence on average is lower than population means. Brain imaging studies of infants born prematurely have demonstrated reduced volumes of parietal and sensorimotor cortical gray matter regions. Studies of school-aged children have demonstrated reduced volumes of these same regions, as well as in temporal and premotor regions, in both gray and white matter. The degrees of these anatomical abnormalities have been shown to correlate with the degree of fetal immaturity at birth. Functional imaging studies have shown that these anatomical abnormalities are associated with severe disturbances in the organization and use of neural systems subserving language, particularly for school-aged children who have low verbal IQs. Animal models suggest that hypoxia-ischemia may be responsible at least in part for some of the anatomical and functional abnormalities. Increasing evidence suggests that a host of mediators for hypoxic-ischemic insults, including increased apoptosis, free-radical formation, glutamatergic excitotoxicity, and alterations in the expression of a large number of genes that regulate brain maturation, particularly those involved in the development of postsynaptic neurons and stabilization of synapses. The collaboration of both basic neuroscientists and clinical researchers is needed to understand how normal brain development is derailed by preterm birth and to develop effective prevention and early interventions for these often devastating conditions.
***
Introduction
"The public health ramifications of premature birth are profound. Infants weighing less than 1500 g at birth now represent nearly 2% of all live births in the United States, and survival rates for these infants approach 85%. The numbers of prematurely born infeants surviving into later childhood, adolescence, and adulthood are staggering.
Functional Outcome.
The adverse consequences of preterm birth have been increasingly well appreciated by medical professionals and researchers, but they have not been widely recognized yet by the lay public. The prevalence in this population of major neurodevelopmental handicaps such as cerebral palsy and mental retardation, ranges from 12% to 32% depending on the particular cohort and study. The prevalence of less devastating and less obvious adverse neurodevelopmental outcomes is even higher. IQ scores in this population average 85, or one standard deviation below the population mean. Even uncomplicated neonatal courses frequently have serious cognitive and educational difficulties, and more than half require special assistance in school or education in full-time special education classrooms. by 8 years of age, nearly 20% have repeated at least one grade in school and frequently, more fail in school later as educational demands increase. Rates of attention-deficit hyperactivity disorder, various anxiety disorders, disturbances in thought processes, schizophrenia, and learning disabilities in this population are several times higher than in the general population.
Preterm Birth and Brain Development
Fetuses born a young as 24 weeks gestational age, or in the later second trimester of pregnancy, are now routinely viable. The brains of these children must develop in an environment that differs vastly from its normally protective intrauterine environment. These babies frequently have serious respiratory illnesses and hypoxia that require intubation and mechanical ventilation, a variety of infections and sepsis, blood pressure abnormalities, intravenous feeding and malnutirition, growth retardation, intracranial hemorrhage, metabolic disturbances, hyperbilirubinemia, and they are placed in a noxious intensive care environment that isolates the infant from maternal tactile stimulation while exposing them to painful needle sticks and sensory stimulation far in excess of that experienced in utero."
***
I'll try to type more of this very long paper later, if time permits, but you get the idea...
The difference in the quality of information given and tone in which the information is given compared with that in the handout for parents seems striking -- to me, at least. Would giving Dr. Peterson's paper to new parents (with translations of the "medicalese") lead to the same understanding and decisions as those parents get and make after reading the information sheet?
I see your point- there is a significant difference in semantics. Your question, "Would giving Dr. Peterson's paper to new parents (with translations of the "medicalese") lead to the same understanding and decisions as those parents get and make after reading the information sheet?" I think the answer is "yes." I think no matter how you present it, as long as it is clear, when parents are aware of the potential outcome of disabilities, and in the case of extremely premature babies that potential is high, the parent has to make a decision based on that fact. Since a preemies true outcome and specific disability can not be predicted before or even at birth, the big question is: can I/ do I want to risk having a child with disabilities. It almost has to be that grey since there aren't absolutes in the micro preemie world. All we know is that for sure it is going to be difficult, long and require medical interventions and a life long commitment. I actually feel that too much research and too much medical terminology can leave parents confused and impair their ability to make an informed decision b/c of lack of understanding. What I liked about the information sheet was that it was written in a way that was easy to understand but in no way sugar coated the research or outcomes as we know them to exist today.
Some parents no matter what you say will always choose to see the silver lining. None of the research is 100% so it almost always comes down to emotions and values, no matter how it is presented.
I too agree w/anonymous, yes I do think that if a parent were given such information that they would have enough information to be able to make a informed decision..It does shed a little light into what the future could hold, the possibilities of disabilities and such..There are no ways to tell who will fall into exactly what category and again I feel that this is pretty much covered..All in all I think that it is very well written, the point is there it's just worded in a more accepting manner than what I get when I read what Helen is saying..Helen seems more adamant about the negative, the other presents the negative and also shows the possibilities but it's in a not so much in your face sort of way..Again I think what in the end matters is what a parent feels they can handle..
Oh wow, Doug Derleth who wrote this is a friend of mine and a member of preemie-child! Thank you!
I thought it sounded familiar.
Helen,
Can you please let him know that I forwarded it onto the NICU where my daughter received her care. My intention was not to have them copy but use as an example of something "parent friendly," I'd love for them to add something like Doug's to their prenatal consult. Also, please tell him that as a parent of a 24 weeker, I appreciate his honesty and supportive tone.
-Alison
To Alison,
I will let him know and invite him to come here to comment personally.
From the info sheet for parents:
"The choice is clear to some parents, to keep their baby alive if possible and deal with whatever problems may come. Other parents just as clearly feel they cannot put their child through those same problems. Both views are held by well-informed, reasonable, loving parents. Many parents see both views clearly, and find this an excruciatingly difficult decision to make. A mother and a father may have different views, an especially difficult situation with no easy solution."
I thought this was well-put.
Wow, Dr. Doug... I haven't heard/seen anything from him in a long time. Have you been in contact with him Helen?
I think what is very obvious is that different "tone" reaches different people. The first neo we encountered was very blunt. I am very appreciative now, but back then I flipped. I DO think that I would have flipped even if he had been more mild. This is why I think that it is imperative that the focus should be on changing the way the public views preemies. We need to be informed long before we find ourselves with PROM and scared to death.
I am all for pamphlets being given to women at the OB's office. During my last pregnancy I was handed information on some pretty scary stuff, yet nothing on prematurity.
To Stacy,
Yes, I've been in fairly recent touch with Doug and have just sent off an email to him about the current conversation. Stay tuned...
Is Doug Derleth related to August Derleth? I notice he is from WI.
To Kellarsmommy who wrote "the point is there it's just worded in a more accepting manner than what I get when I read what Helen is saying..Helen seems more adamant about the negative"
***
Thought I should clarify that I'm not the one "being adamant about the negative" it is Dr. Bradley Peterson, a researcher who at Yale who has done important MRI studies on preemies, who is being quoted here. He is citing the data on preemies and, in the process, giving facts and using a tone you do not find "accepting."
The point I'm trying to make is that both the content and the tone of information shared among physicians about preemies is very different from the content and tone of information given by physicians to parents.
I think the tone (and information) given parents, when it is given at all, is often slanted to convince them to accept medical treatment.
Doug Derleth's piece is very well-balanced in my opinion, as these things go, but I still think parents (at least the ones who want a complete picture of what may await them and their child) should have access to both perspectives and both sets of information.
Helen,
Would love for Dr. Derleth to join this conversation as he has probably delivered his own information and has first hand experience on how parents respond to different approaches/medium/tone etc... Adding onto to what PE said, I think customized conversations are important too. Yes, we desperately need the pamphlet on the risks/outcomes of prematurity but at the time of medical/neonatal consult there may be different ways to communicate to reach each parent individually. I, too, had a very blunt, to the point, no sugar neo and VERY much appreciated that during the first hours and days of my daughters life- but as PE said, I'm not sure how I would have responded to that approach before I was "in" the situation.
This is a great and much needed discussion!
-Alison
I, too, believe that Doug Derleth's piece is quite good.
I believe that Doug achieves not only a balanced view, but he has a tone that is calming and comforting. It is like your ideal salesperson--the softsell guy, who is not pushing his own agenda, but seems to be truly finding out and looking out for the client's best interests.
Doug says his tone is "dispassionate," but there is definitely an emotional tone of kindly encouragement of parents to confront their difficult choices; to be thoughtful in their evaluations of their own and their infants' strengths and preferences and needs.
What is unspoken is what Joan proferred--that there may be no choice, legally. That the doc may be compelled, legally, to resuscitate a 23-, 24-, 25- and 26-weeker. And parents who would choose comfort care/hospice care cannot legally choose it because of the laws of their localities.
Chris and Vic
On a side note, I think this information is almost more important for the general public than it is for those of us living with preemies. We have the information, we are given the information, in some way, like it or not. It is the general public, and in my case my own family, that is so clueless about the consequences of having a preemie and raising a preemie. Still 2 years later I am defending, explaining, and correcting my own family (and *friends*) about the impact of extreme prematurity.
It gets exhausting after a while and it really can ruin relationships. I really wish others were more informed b/c there are days when I could have used some empathy and understanding.
-Alison
I can't agree more with the fact that the general public needs more information. Look at the way people freak out over a slightly elevated risk on a quad screen result, or the fact that autism impacts 1 in 100+ kids, but most people don't think twice about the fact that 1 in 8 babies are premature. It's incredibly sad.
NICU 101 said: "I can't agree more with the fact that the general public needs more information. Look at the way people freak out over a slightly elevated risk on a quad screen result, or the fact that autism impacts 1 in 100+ kids, but most people don't think twice about the fact that 1 in 8 babies are premature. It's incredibly sad."
I like to call it the preemie mythology - people want to buy into these miracle stories, that everything is going to be ok. Thay are being fed stories courtesy of the clueless media.
HOWEVER, I don't see that neonatologists are really doing much if anything to help in this department. .one only has to look at recent history - how 'bout the so-called 21 weeker in Florida who went home this year. .the neo interviewed was very evasive and selective in the interviews I had seen. PE, I believe you even wrote to the FL newspaper and confronted that neo publicly? How 'bout the twins born at Loyola a few years back - one of them was only 9 ounces. .everything I had seen, the neo in charge of that one had a big smile on his face and claimed things were going well and no reason to think these girls weren't going to be ok. Even the mother was saying how she wanted the 9 ouncer to grow up to become a physician. I would like to see where these kiddos are at right now.
At what point do we hold the neos more responsible as well? Just got off the phone with a nurse friend who spent time in her local NICU and saw a 21 weeker born to a crack mom with an active case of herpes and it had lesions all over it. I quote her "It's really like the neos wanted that baby to experiment." I sad...funny you should say this, you see, there's this blog...
Dear Helen,
sorry to use this blog as a vehicle - however I would be grateful if you contact me as I lost your email address.
I am still very actively involved in research with very preterm children and youths.
My webpage: http://www2.warwick.ac.uk/fac/sci/psych/people/academic/dwolke
look forward to hear from you
Dieter
Dear Dieter!
Email me at Helen1144@aol.com
All the best,
Helen
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