Sunday, April 20, 2008

New Tool for Doctors and Parents

The NIH (National Institutes of Health) has created a new tool to help parents and physicians make decisions regarding the extent of care that will be given to a newborn premature infant (22-25 weeks gestation).

4 key bits of information are entered (weight or estimated weight based on US, sex, gestation and whether or not the mother received steroids before birth) and then a chart is displayed with statistics showing survival rates and the percentage of those with mild to profound disabilities.

Directly from the NIH website...

"Every day, physicians and new parents must struggle with the type of care to provide to extremely low birth weight infants, the smallest, most frail category of preterm infants. These infants are born in the 22nd through the 25th week of pregnancy—far earlier than the 40 weeks of a full term pregnancy. Many die soon after birth, despite the best attempts to save them, including the most sophisticated newborn intensive care available. Some survive and reach adulthood, relatively unaffected. The rest will experience some degree of life long disability, ranging from minor hearing loss to blindness, to cerebral palsy, to profound intellectual disability.

The study authors referred to the issue of providing intensive care for extremely low birth weight infants. For example, physicians and family members may be reluctant to expose an infant to painful life support procedures if the infant is unlikely to survive. In such cases, they may opt for “comfort care,” which provides for an infant’s basic needs, but foregoes painful medical procedures. In deciding the kind of care to provide, specialists at intensive care facilities traditionally have relied heavily on an infant’s gestational age—the week of pregnancy a premature infant is born. Gestational age is known to play a large role in the infant’s survival. For this reason, in many facilities, intensive care is likely to be routinely given to infants born in the 25th week of pregnancy, whereas infants born in the 22nd week may be more likely to receive comfort care."


Although I am encouraged to see that parents will be given a choice and hopefully some useful information, I wonder how many docs are aware of this information or will even use it.

It is a start nonetheless.

127 comments:

Anonymous said...

From Helen Harrison:

I like the idea of empowering parents by giving them this information independently of the hospital (which may have a vested interest in resuscitating).

I think that many parents, in the emotional heat of the moment of the delivery room, are easily manipulated by a number of factors that make them want to opt for "everything" even when they have no idea what this entails.

If couples were allowed to think about the treatment and the outcomes *alone,* away from the docs and all their technology, they may make different decisions.

This is a "testable hypothesis," as they say, and it will be interesting to see if having this resource available *before* the heroics begin will make a difference.

Helen

Laura said...

we have implemented and use this tool in my facility for the past 6 months or so. i just recently attended a delivery where all we gave was comfort when the little one arrived. it was very emotional for everyone as it always is. one might think it would get easier for us practitioners but it doesn't...at least for me 18 years later i am still wiping tear away after baptizing and wrapping a wee one up in a warmed bunting and handing her back to her tearful family.
i am glad we have implemented this tool but i must say sometimes there is no time for logic to supercede emotions.
one thing that comes to my mind after reading Ms Harrison's comment is how media and misinformed, well meaning family and friends often can influence a family. i get so frustrated when after supporting a family through a doc's presentation of the reality the fam offers how so and so had a baby born 3-4 months early and they are just fine now. it may be true but still it doesn't fairly portray what a baby and family must go through with a resus, nicu stay and the years to come.

Anonymous said...

Yes, we may desire to be influenced by rational explanations and solid data, but we are influenced by emotions . . . and by family, and by our culture.

Where in our culture or in our upbringing did we learn to let go?
Letting go is, in fact, counter-culture. In our culture, we prize getting what we deserve, getting more, having it all . . .

Even if we are church-goers, does the Sunday sermon encourage us to discipline ourselves to let go? To recognize when it is time to let go, and then do so? (I have distanced myself from organized religion, so maybe Sunday sermons DO teach us letting go . . . I don't really know.)

Only in Zen practice do I ever hear about letting go. Or about cultivating detachment.

I know Stacy has asked us at other times to leave our deity at the door . . . I don't intend to make this a discussion about religion, per se, but I do hope we can talk about those things that influence us in our decision-making.

In the Catholic tradition, long ago, I heard "Deny yourself, take up YOUR cross and follow . . . " And even though I have rejected many things Catholic, I can respect that we were taught to discipline ourselves and be as unselfish as possible and avoid greed and feelings of entitlement.

Now, even when I mute the TV commercials that interrupt the broadcasts, I can see that we are being taught to be grasping, to believe that we are entitled to have it all and certainly NOT be willing to give up anything. I sometimes think of the evening news about the relationship of the food shortages in Africa and Haita, the way the country has been ravaged in Iraq, and how American culture makes us feel we need and deserve a 50-in HDTV and a deck with teak patio furniture, etc.

Let go? Have limitations? Are you kidding. Quite the opposite. So that when/if it comes time to seriously consider the wisdom of letting go of a child with slim chances of survival without very serious morbidities . . . we have NOT ever been trained to let go.

I plugged in my own son's data into the tool, to see what my own emotional response would be, and how close to accurate the prediction would be. The prediction for Vic is dead-on. Thankfully, I am in a "good" place in terms of accepting what-is for Vic, so my emotional response is one of calm.

I think anyone should plug in the data, and test oneself. "If I knew the predictions ahead of time, what would be my emotional response? What would be my thoughtful, rational response? Would they match up? Would I consider letting go?"

Chris and Vic

Anonymous said...

My only question is, will the parent get a choice? Or will doctors look at this info and make the decision for them???

Anonymous said...

TPD here. It seems reasonable to have such a tool available in medical consults and to parents outside of the medical arena. One of the first thing people ask is "what are the odds of ____?" So this would help answer that question in a reasonably "accurate" way.

What parents do with this infomation is anyone's guess. My guess would be not much will change on a case-by-case basis. People are not statistics and resist being pigeonholed by them. Also people identify with the possibility of "beating the odds." If someone told me I had a 10% chance of winning the lottery, I'd enter on the spot. WHen faced with such a huge loss - so much at stake - even small odds look pretty good.

I suppose it would be better to ask parents' permission before offering advice or sharing anecdotal stories, but that's just what people do. People do their best and have good intentions, but often fail in very human ways.

I don't think parents are "manipulated" in some sinister way into saving their children. Nor do I think it is a good idea to compare parents' desires to help their children to the evils of consumerism. It's just very patronizing at a minimum. Many times, it angers many people to the point where they stop listening/reading, and just want to argue.

Anonymous said...

TPD Here.

Here is the disclaimer info. that is published with the tool:

These data are not intended to be predictive of individual infant outcomes. Instead, the data provide a range of possible outcomes based on specific characteristics.

If you choose to use these data to determine possible outcomes, please remember that the information provided is not intended to be the sole basis for care decisions, nor is it intended to be a definitive prediction of outcomes if intensive care is provided. Users should keep in mind that every infant is an individual, and that factors beyond those used to formulate these standardized assessments may influence an infant's outcomes.

Anonymous said...

"This is a "testable hypothesis," as they say, and it will be interesting to see if having this resource available *before* the heroics begin will make a difference."

I agree with this. My guess is that you will see more people choosing to resuscitate with any odds > 0. Not saying that is a good or bad thing, but I think we're hardwired to favor life.

Anonymous said...

Helen Harrison to anonymous who said:"My guess is that you will see more people choosing to resuscitate with any odds > 0. Not saying that is a good or bad thing, but I think we're hardwired to favor life."

***
Although I am not at liberty to reveal the results, informed consent for resuscitation <26 weeks is currently being field tested and the results may surprise you.

Stay tuned!

Helen

SBTVD said...
This comment has been removed by a blog administrator.
Kyrsten said...

Chris,

Nail on the head.

The doubts come for me not when I am reflecting on my firstborn, but when I get involved in a discussion where I am made to feel *wrong* somehow about letting him go: as if we didn't have enough faith (in God, in the medical community, what-have-you).

I agree that we are "hardwired" somehow --culture, religion-- to choose life, and that there is almost a sense of shame rather than dignity with letting go.

The "my preemie is perfect now" stories are hard to take; but so are the harsh realities facing my surviving preemie.

Can't win, can we.

I think I can say I *resent* having had to make a choice, if that makes any sense. Emotion will always play a role in our decisions.

23wktwinsmommy said...

Kyrsten,
I know what you mean about *resenting* having to make a choice. I felt that way more with my decision to make our son a DNR and our almost decision to end care.
I didn't want to bear the weight of making choices about the life and death of our kids. But then I think...would I have really wanted someone else to make that choice? It's so tough.
I plugged our kid's info in this tool and the results were terrible at best. At only 550 and 560 grams, twins, and a boy, we didn't have great odds.
The painful truth is had we had this tool I don't know what our choice would have been. Especially based on the very poor survival odds...38% for S and 29% for E. But knowing them now and all the joy they bring it's impossible to honestly say what we would have done with these numbers. I guess in a way I am thankful we didn't have the tool because I fear numbers could have dictated our choice and that would have meant an enormous loss...a loss that is too painful to really consider.
Our 23 weekers are not the "miracle" story. It is still early to tell, but our son clearly has global delays and perhaps mild CP. Our daughter is actually bridging the gap between her adjusted and actual age based on the Bayley scale, but as we see in other's stories here that doesn't show us what we can expect as they enter school age and beyond.

I personally believe that people will opt not to resuscitate based on this tool. Even with the hard wired drive for survival I can see how grim these numbers look on paper. I also believe there are people who will continue to choose resuscitation in spite of the tool. I believe there will always be people who want everything possible done to save their child's life.
I don't know for sure if S&E will fit into the majority or the minority with respect to probable outcomes, but I do know I see immense value in their lives and know I always will.

Kristie McNealy said...

I'm really not sure how parents will use these numbers. I think it could strengthen the resolve of people who believe in life at any price to see any possibility >0 that their child will survive.

For me on the other hand, this tool further cements my decision that we wouldn't have resuscitated our youngest if he had arrived before 26 weeks. I plugged in the stats from a growth scan we had at 25 weeks, and assuming we didn't stall things long enough for steroids, he would have only had an 11% chance of survival without moderate-severe impairment.

Considering the pain I saw our relatively healthy 31 weeker go through in the NICU and throughout her first 18 months of life, I don't think it's worth even more suffering for such a small chance at a good outcome.

Either way, I think we need to draw a line somewhere. What I'd really like is to see better outcomes and longterm support in place for current survivors before docs start pushing the limits of viability even lower. We can't really go backwards, now that we know we can save babies born at 22+ weeks, but in my opinion, we owe more to the babies we are treating and saving now. They deserve the best chance at a good and healthy life before we start trying to save 21 weekers...

Kyrsten said...

Little did I realize last night when I commented the things that'd be on my mind today: I am pregnant.

Wow. Six years of "trying," one successful IVF, two sons born early, one 17-month old who has overcome a lot, and brought more joy to my life than I even imagined...

Will I use this tool if I "go early" again?! I don't know... Tonight, I'd do anything to keep the joy going.

Anonymous said...

Congratulations Kryten!

Do you know why you delivered early previously?

I wish there were more answers to that question, then perhaps the need for these types of tools wouldn't be as great. The babies shouldn't have to be born so early, it truly isn't fair.

In my case my two pregnancies followed exactly the same course (preterm labor) - no clues as to the cause, every test came back normal (yet obviously things were far from normal.)

-TPD.

Kyrsten said...

I had a mystery pain: sharp, one-sided, lasting only a short time... Four days and three "you're fine" exams later, I suffered pPROM.

No explanation whatsoever.

Now that the shock has worn off (a little!), I'm scared.

I don't want to have another preemie experience... but I'm probably going to, aren't I?

The Preemie Experiment said...

First, let me apologize for my absence. I know I haven't been commenting for quite a few weeks. I'll talk about it all soon but for now please know that I do read every response. I am so thrilled to see everyone coming back to add to the conversations. Thank you all.

Secondly.. congrats Krysten!! I know exactly how you are feeling right now. When I got pregnant with my son it was a huge surprise. Hubby and I were NOT trying for more. I always wanted more but the fear was overwhelming.

Now, let me say this... you will get through it. I know your emotions are all over the place but you will surprise yourself and soon be able to focus on the big picture. Find a doc that is understanding of your situation and is professional enough to handle all of your questions. If he/she even gives you the slightest feeling that you are asking too many questions or that your questions are wasting his/her time... find a new doc immediately.

I also had PROM (23.0 weeks) with Paige. We never found out why either.

For what it's worth, I did not PROM with my son. I did have a hard pregnancy but did not PROM. I chose to do the 17P shots but I have heard some conflicting reports as to their efficacy.

There is a wonderful Yahoo group called PPPG which is only for parents who are pregnant after having a preemie. Eleanor is the moderator and she is wonderful. I am in a bit of a rush and do not have the link handy. But, if you look back in my archives you will find it. If not, please let me know and I will get it to you.

If you have any other questions, fears, concerns, comments, please let us know. If you would rather, you are always more than welcome to email me privately.

Anonymous said...

It is not certain (or even probable) that you will have another premature delivery. A lot depends on what the cause was the first time, and a good perinatologist will hand-hold you through a personal history and order tests that might shed some light. Even if there is not a suspected cause, just having someone watching you like a hawk every week or two from very early on will detect small changes and adjust things based on anything suspicious. In my case I was in and out of the hospital and on bedrest from 24 weeks. Had 17P shots, had subcutaneous drugs, had twice-daily monitoring and sending results to a center. But making it to 32 weeks was always the goal, and we made it without PROM (my first I PROMed 2 weeks before delivering).

So I second the idea of shopping around for the right perinatologist, who also has admitting privileges at the NICU you prefer, and preferably the ante-natal unit.

Kristie McNealy said...

Kyrsten -

Congrats!

I know a little bit about how you feel. We tried much longer than expected for number three, and he was deeply wanted, but when I was finally pregnant I was terrified. My peri was great, and did an awesome job of both hand holding, and getting us to term for term first time ever.

We did 17P too, and eventually nifedipine when I went into PTL at 32 weeks. Hop over to my site and send me an email if you ever want to chat.

-Kristie

Anonymous said...

Helen Harrison to Krysten:

We didn't have PROM exactly since labor started first, but there was infection (listeria, in our case)and infection is thought to be a major reason for both preterm labor and PROM.

Cultures and antibiotics, if indicated, may help bring some threatened pregnancies to term.
But the jury is really still out on this.

Sometimes the microbe involved in preterm labor and PROM is hard to pin down and requires careful study of the placenta -- in some cases viruses may even be resonsible, which can't be treated with antibiotics.

I was, of course, terrified throughout my second pregnancy, but at two weeks post term delivered an 8 pound 6 oz healthy baby girl.

Good luck!

Helen

23wktwinsmommy said...

Congratulations Krysten! Wishing you a healthy full term pregnancy!

Anonymous said...

I don't see this predictive tool helping parents. It may give them the illusion that they are correctly predicting the odds in a crap shoot. My son had zero chance of survival, and obviously zero chance of turning out well. No other baby had survived his collection of problems in that era. He is doing very well now, no one would know he had such a terrible start (unless he took his shirt off and they saw the scars, or challenged him to a long distance run).Up till that time mom's in my position expecting a baby like him would have been counselled to abort.

Anonymous said...

Helen Harrison to anonymous:

Could you tell us more about your baby? What gestational age? What problems? What era?

Helen

Kellars Mommy said...

Either way, I think we need to draw a line somewhere. What I'd really like is to see better outcomes and longterm support in place for current survivors before docs start pushing the limits of viability even lower. We can't really go backwards, now that we know we can save babies born at 22+ weeks, but in my opinion, we owe more to the babies we are treating and saving now. They deserve the best chance at a good and healthy life before we start trying to save 21 weekers...

I see what you are saying but there are some things that I would like to ask. The first being the "we" need to draw a line somewhere. I maybe read into this the wrong way and if I did so forgive me in advance, but the way I took it would seem that drawing the line may take away a parent that just had a baby >26wks chance of continuing care? I think that there needs to be evidence and data to present to these parents, but ultimately I feel they deserve the final say. Wouldn't you say that in order for better outcomes to be seen that would mean putting forth the effort to save preemies that are being born now, you yourself said that you can't go backwards so in order for us preemie parents to see better outcomes it would have to be done on *new* preemies which would mean putting forth a effort to save these little ones, though I do understand your thinking of long term care as that would affect those of us with preemies as of now..Again maybe I have read into this in a different way than what was intended..

Kristie McNealy said...

To Kellars Mommy:

No!! Sorry if that wasn't worded clearly. What I meant was, now that we know we can resuscitate down to 22 weeks and babies live, we can't stop doing that. I think it should continue to be a parent's choice down to 22 weeks. I just meant we shouldn't jump into resuscitating 21 weekers until we get better with our outcomes at the current limits of viability. I don't want to take a parents rights away under 26 weeks.

Hope this is more clear!

-Kristie

Kristie McNealy said...

Or maybe this is more clear: Now that we can do 22 weeks, the next step shouldn't be 21 weeks, it should be doing BETTER at 22 weeks (and 23... etc).

The Preemie Experiment said...

Kristie wrote: "Either way, I think we need to draw a line somewhere. What I'd really like is to see better outcomes and longterm support in place for current survivors before docs start pushing the limits of viability even lower."

Exactly! This is what I (along with others) have been saying.

I am out of my mind with anger at times to see what is happening to 21 weekers. Now that one has lived I am afraid of the false hope it has given to pregnant couples everywhere.

Not that long ago someone mentioned (not on my blog) that the edge of viability has been reached, at 21 weeks, because babies at 20 weeks are not at all viable and no medical facility would try to save them. Well, I have news for people, this is false. I cannot give away my source but I know there are NICU's out there attempting it and it makes me sick. Literally sick! When I questioned someone in the medical field recently I was told that babies veins are too small at that gestation and they felt it was impossible. It is being attempted though.

Sorry to be so bold with the following statement but... if your baby is born at 20 weeks, comfort care should be the only option! Period!

Better outcomes, with the acknowledgment by people in the medical field that they are fully aware that some treatments cause long term damage, before we continue to knowingly harm more babies.

Yes, I'm angry. Extremely angry. For 9 years I've watched batch after batch of new preemies being born. I've watched parents' thinking evolve and transform. I've watched kiddos grow up and start school with the struggles that are not being acknowledged. I've watched parents divorce. I've watched adult preemies, that I care about deeply, struggle to understand themselves.

Our kiddos have been experimented on for far too long. Why aren't the outcomes improving?

The Preemie Experiment said...

Anonymous wrote: "My son had zero chance of survival, and obviously zero chance of turning out well. No other baby had survived his collection of problems in that era. He is doing very well now, no one would know he had such a terrible start (unless he took his shirt off and they saw the scars, or challenged him to a long distance run).Up till that time mom's in my position expecting a baby like him would have been counselled to abort."

Dear Anonymous,

While I am honestly happy for you and your son, I wonder how many parents of children born after yours were given false hope because of your son's survival? Do ALL of the babies with your sons birth issues go on to live normally now? Was he the first and now all of the rest have survived in tact?

Kyrsten said...

Considering all we went through with the boys, I really wanted to "find my voice" and get involved with preemie care issues. In a very short time here, I've been better educated to do so-- AND I feel I've found a true support network. Thank you!

I wasn't familiar with 17p shots;
I might not meet certain criteria for them, because my prior pregnancy was a twin, not a singleton. I'm asking about it, though.

From what I've read, in cases of suspected infection causing pPROM, low-dose antibiotics may be prescribed in subsequent pregnancies... has anyone heard of that actually working?

I also think we're going to look into a different peri-, because my "high risk" doc was the one who only emphasized "getting further along" after my pPROM-- he did not discuss the complications of doing so, or possible outcomes, at all.

Often, I look for the "silver lining" when it comes to my mothering experience so far: in this case, I am now armed with a multitude of information and questions for my ob/gyn!!

More on this discussion: who said, "just because something *can* be done, doesn't mean it *should* be"?

Kellars Mommy said...

Kristie
After I posted I did go back and I re-read what you wrote and I was able to *get* what you were saying.

**I wonder how many parents of children born after yours were given false hope because of your son's survival?**

I do agree that some parents look for success stories when it comes to having a preemie. I did, I wanted to see the good, I wanted to see that story of a 26 wkr walking one day, going to school, even if it were only 1 story out there like that I wanted to read that ONE, sure I found a lot more that were not what I was searchig for, do I feel that one story I may have come across changed my mind and made me decide to disregard the dr's suggestion of taking lunch and discussing taking Kellar off the vent, NO not at all.
When I made it to 24 wks I started searching for other 24 wkrs, I wanted to see what they would look like, I wanted to see their issues, how they are now. I did this up until I went in the hospital at almost 26 wks, while searching for the "good" stories I also came across several that were very much stomach knotting, they were truthful, some were probably more truth than I wanted to see but the parents were honest. While I understand that there is a big problem with *false* hope when it comes to one preemies outcome, I also have to wonder how many parents may come across a blog or a article with a outcome that obviously is more common than a outcome like one that this mother is talking about with her son and therefore that mother chose not to continue care? I see where some are bothered that the face of prematurity is a happy, running smiling toddler, I know it is not always the case, but then on the other hand it's not always a child with severe disabilities either, there has to be a happy medium to get the truth out there, but how do you really do that when their are wide variety of outcomes?

Kristie McNealy said...

To Kyrsten -

As long as THIS is a singleton pregnancy, I think you'd probably qualify - although, some if it is based on why you went into labor early the first time around. It's at least worth chatting about.

I'd see someone as soon as you can to at least chat about how they'll monitor you, philosophy about bedrest, when they'd stop tocolytics if you end up needing them (my OB stopped them at 34 wks, but the peri flipped out and restarted them, thus getting us to term), etc. Plus, you'll want an ultrasound from the peri to get accurate dates established.

If you want more info, I found this discussion/article about preventing recurrent preterm birth when I was pregnant.

Good luck, and enjoy this!

Anonymous said...

False hope is when you hope in vain for something that cannot happen.

If it has happened, then hoping for the same outcome is in fact hope.

Anonymous said...

I question your statement, Anon 4/26, 2:28 a.m., about hope being false/vain or "true". What you say is, to me, black-and-white thinking.

A neonatologist may say "I am hoping for a good outcome". What does that mean? Alive vs dead?
Morbidity vs. mortality? Minimal morbidity vs severe morbidity?

Hope CAN be a trick we play on ourselves . . .

Another approach, which probably leaves fewer psychic wounds, is to hope for the WORST, and be grateful for any outcome better than the worst outcome.

If I take this approach, then I find myself grateful oftener than I find myself feeling disappointed.

I am not/you are not/we are not entitled to anything--neither good nor bad outcomes. We don't know what we will get, with respect to our children or anything else in life. I think the trick is to develop the flexibility and the neutrality to accept whatever you get. Graciously and gratefully.

Sometimes you get bliss. Sometimes you get a hard lesson. Sometimes, pure grief.

Chris and Vic

Kristie McNealy said...

Chris and Vic makes a good point about hope and expectations. My outlook about medical things (after experiencing so many ups and downs with our preemie) is "expect the worst, hope for better." I was in a different frame of mind when C was first evaluated at physical therapy. I expected them to say, OK, her tort is pretty mild, we can fix this with a few exercises. Instead, they did a whole developmental evaluation, and then handed me a sheet of paper with all of her motor delays written out in black and white (10 mos old, motor skills of a 5-6 month old). That kind of blind sided me, and I cried more than once over it.

Later, when my son had to see a neurologist for a droopy smile, I prepared myself (made myself expect) for them to say that it could be a mass pressing on the nerve, and he'd need a bunch of tests. When the doc said he was born missing one of the muscles around his mouth, instead of being upset that he'll always have a lopsided smile, I was happy and relieved. It's all a matter of perspective.

Of course, those weren't life and death issues, but I guess you have to practice on the small things.

Anonymous said...

Helen Harrison to Anonymous 2:28 AM who said:

"If it has happened, then hoping for the same outcome is in fact hope."
***

I'm interested in what outcome you feel has happened once and therefore can now be plausibly hoped for?

Helen

23wktwinsmommy said...

I'm not anonymous, but perhaps he/she was referring to the percentage of micro preemies who do not have moderate to significant impairment. Some preemies are not impaired (however small the number is...even my son's stats aren't 100% mod/severely impaired and that's at 23 weeks, 560 grams, a male, and a twin) and this is why anonymous is saying it is not necessarily false hope to hope the same for another micro preemie.

Just noting what I got out of that statement.

Anonymous said...

Helen Harrison to 23 week twins' mommy:

I'm trying to figure out if there really are <26 week preemies who are truly unimpaired by their extreme prematurity (and not just by the NICHD's limited definition).

The only 100% stat I've ever seen in NICU follow-up is that children born at this gestation *all* have pervasive brain reduction and abnormalities.

Then there are the other organ systems besides the brain -- lungs, bones, kidneys, liver, GI tract, eyes, ears.

The "bar" for disability on the NICHD stats is *very* high. You have to test as retarded, and/or the motor equivalent of retardation, or be blind or deaf -- all *before age 2* to qualify as impaired. This leaves out important diagnoses like autism.

I think we have all seen, on this blog and elsewhere, that many children who would have been considered "unimpaired" by the NICHD classification (my son, for example, might well have been dismissed as unimpaired at age 2) still have significant disability in later life that precludes independent living.

In other words "unimpaired" (by the government stats) does not necessarily mean "normal."

What I'm trying to find out is if there are really children out there <26 weeks who -- long-term -- are growing up without any adverse effects from their prematurity.


Helen

Nancy said...

"What I'm trying to find out is if there are really children out there <26 weeks who -- long-term -- are growing up without any adverse effects from their prematurity."

At 2 months shy of turning 7 years old, my daughter has no adverse effects of her prematurity.

Her stats:
25 weeker
525 grams
11 inches long
NICU stay of 106 days
No antenatal corticosteroids
Preemie follow up clinic at the hospital she was born at for 3 years
Currently involved in the school age clinic of another NICU that follows "at risk" infants for 8 years.

I have encountered other preemies born at <26 weeks that also are currently showing no adverse effects of their prematurity.

Anonymous said...

Helen Harrison to Nancy:

Your daughter's development so far sounds very encouraging!

But what I'm looking for is info on a much older child -- someone in his/her late teens/early 20s.

There is, unfortunately, so much that only becomes apparent later in life, but can be quite significant in terms of normal health and independent living.

I know of *two* older children (a preemie girl and a boy) who were born at 24 weeks who are in late childhood/early adolescence now and looking good, though perhaps not entirely unscathed.

I'd like to know: what are the practical long term outcomes of the universal -- or near universal (not every <26 week preemie is always scanned) -- brain differences seen in these children. Other organs are also similarly impacted by prematurity, presumably the earlier the gestation, the greater the impact.

What I'm hearing from the adult preemie lists on their health -- physical and mental -- is not encouraging, but they may not comprise a representative sample.

I'd like parents to have a clear picture of what the best they can hope for is, and I'm not sure what that is.

Helen

23wktwinsmommy said...

To me, there are different layers of hope. Of course I hoped that S&E would come away from their prematurity as unaffected as possible. I never realistically hoped they would be completely unimpacted because based on their situations I knew that wasn't possible, especially when you're looking at the big picture which includes organ functions, such as their lungs.
For me, my greatest hope is that they will be happy and have a valued place in this world. Brain scans may reveal abnormalities but what does that really mean for their happiness and purpose in life? It's a huge reason for why I have opted not to have MRIs done...that and the unnecessary risk in putting them under anethesia. What will it tell me? What will it change?
Helen wants to know "what's the best we can hope for" as parents of micro preemies. I don't really have an answer for that. I know some people want to know how many former preemies can walk, can see, can hear, are in special ed, go on to live independently?...and these are all valid questions. But it won't answer the question, "what can I expect for my individual child?"
Even if you can't find one former micro preemie who walked away completely unscathed, there is clearly a HUGE difference between diagnoses and outcomes.

I personally know disabled individuals and am aware of prominent people in our world who are disabled and are living happy, purposeful lives. To me this is where my personal focus lies with regard to my children.

Nancy said...

Helen,
I understand wanting to wait until children are older to see outcomes. However, what I don't understand is this:

If my child is doing really well at age 7, yet at age 13, 14, 17, it is discovered that she has some form of a learning disability or has issues with depression, how can any one doctor tell me indefinitely that it is because she was born prematurely??

I think if a doctor were to even tell me this now, I would have to wonder how good of a doctor he really is. The gray area for me comes to surface when a preemie, at an older age, is diagnosed with something that many full term children are diagnosed with. How can one say that the cause is prematurity when so many full term children are diagnosed with the exact same disabilities?

23wktwinsmommy said...

Nancy, I agree with your older former preemie insight.
I believe that at before 3 years old there will be tell-tale signs of things like CP, even mild. Maybe Drs aren't giving the official dx yet, but if your child has CP, whatever form, and it will effect their lives in some way, you will see this around the time they become mobile; it may be especially obvious when you see your child around full term peers.

Learing disabilities may take until school age. I understand the logic in waiting until after 3 to make assessments, but I believe the more severely a child will be effected, the earlier you will see signs. Even extreme "abnormal" intelligence in a particular area is a red flag.
Autism might take a little longer, but even still, we are not talking about these kinds of issues arising during young adulthood. A dx might take some time but it doesn't mean all was fine and typical and then all of a sudden you have a severely disabled child when they hit the age of 18.

So if we're talking about disabilities and how it effects quality of life, I believe the most impaired will exhibit signs early on.
If issues arise later in life, say mental health issues, I can't see how we can automatically attribute them to prematurity. Depression is a widely dxed mental illness that doesn't discriminate. Perhaps brain differences do play a role, but we have yet to discover why full term, healthy individuals are mentally ill. Therefore, I don't believe you can jump to the conclusion that any and all helth-related issues are a direct result of prematurity if that person happens to be a former preemie.

23wktwinsmommy said...

After writing the above I thought about the kiddos who were dxed with very mild CP at an older age based on difficulties in running/jumping and walking for long periods of time. So I mispoke when I said it would be evident at an early age...because this is not the case 100% of the time. However, like I said, the more the impact the earlier you'll see signs.
I just wanted to point out that children like Caitlyn, Nancy's daughter, at age 7 who is above average intelligence in school, having no difficulties with motor, speech, social/emotional, etc is not going to be classfied as impaired once she gets even older based upon her prematurity.

Anonymous said...

Knowing Helen, she wants hard data from a well-conducted study, re issues that do not surface till later in ex-preemies.

Anecdotally, Terri w/2's daughter is struggling mightily to live independently, to get through college, and organize herself, per Terri's posts on this blog.

Last, Nancy's daughter, thankfully doing so well, is in a clinic for children at risk. To me, that means that the follow-up people ARE expecting the other shoe to drop at some point.

Helen has presented data in the past that tell us that children who end up not able to live independently often have several "mild" disabilities that add up. It is not necessarily blindness, deafness, CP or cognitive disability--the biggies--that get them. It is a cluster of several softer deficits . . . Perhaps Helen would like to refresh me/us on that study or studies.

Chris and Vic

Nancy said...

"Last, Nancy's daughter, thankfully doing so well, is in a clinic for children at risk. To me, that means that the follow-up people ARE expecting the other shoe to drop at some point."

This is actually a grossly inaccurate statement. The clinic is attended on a voluntary basis. They do not go out and locate children who are at risk, rather, parents have to find them.

I have Caitlyn seen there for statistical purposes only. Thus far, she has not shown any delinquencies in any of the areas that she has been tested in. The clinic was started based on Dr. Bennett's research of the sleeper effect in preemies. I encountered the program merely by chance and thought it would be a good thing to include Caitlyn in as she does not fit the typical mold of a 25 weeker. If anything, we are there to play devil's advocate to those typical outcomes.

Kristie McNealy said...

Well, as far as later onset problems go, I wouldn't be too quick to discount the fact that they could be caused by prematurity, or treatments given to preemies. We know premature babies are often born during critical periods of brain development. We don't fully know the longterm impacts of this. It wouldn't be the first time we've seen longterm repercussions of life saving treatments (one example from the past is the secondary cancers we've discovered occur in pediatric cancer survivors, due to their chemo treatments).

I only have the abstract, so I don't have every detail, but there was a study recently that showed decreasing cerebellar volumes in teenage preemies. These kids also reported increasing problems with concentration, organization, feelings of self worth, etc. Of course, we need more data, repeated studies, etc, to really define what was going on with theses kids. But, it sounds like this could lead to a clue to some of the psych problems people are reporting in their preemies.

There is just too much we don't know.

The Preemie Experiment said...

The fact that Nancy's daughter is doing so well is encouraging. Obviously the stats never show 100% impairment so we can expect to see some kids doing better than others.

But, what I would like to see is the reason WHY she is doing so well. Can we duplicate it so other kids can have a better chance?

The Preemie Experiment said...

Kristie wrote: "These kids also reported increasing problems with concentration, organization, feelings of self worth, etc."

A few years ago (may have been more than 5 years ago) there was a story done on older preemies and how they have a higher risk of suicide. The reason it stuck in my head all of these years was because the story reported that the preemies had done "remarkably well" during their NICU days and childhood years. These were intelligent kids.

The Preemie Experiment said...

Helen wrote: "I'm trying to figure out if there really are <26 week preemies who are truly unimpaired by their extreme prematurity (and not just by the NICHD's limited definition)."


I personally feel that the follow up studies are not accurate. I think more kids would be considered impacted by prematurity if parents were honest and the clinic was also honest in their reporting.

I have spoken to parents of preemies who have gone through their follow up clinics. They do NOT mention all of the issues they are dealing with during their clinics. Some parents have said that they are afraid they will sound ungrateful. Some have said that the clinic staff have insinuated that they (the parents) are simply stressed out and are reporting on behaviors that were not seen during clinic. (duh)

I would like to see the follow up clinics be conducted by an independent agency, instead of one associated with the hospital NICU.

Nancy said...

"But, what I would like to see is the reason WHY she is doing so well. Can we duplicate it so other kids can have a better chance?"

That is the interesting thing Stacy. Caitlyn's NICU stay was so uneventful, even for a baby born quite healthy let alone one born as frail as Caitlyn.

Whenever people find out that she was born so prematurely they are usually stunned, at least people who know about outcomes are. And I always tell them it just seems to be "luck of the draw." Cause for the life of me, I can not figure out what was so different about her course of treatment than any other 25 weeker.

What types of things involved in treatment would have to be so drastically different to result in such a different outcome?

Anonymous said...

Nancy, do you have Caitlin's medical records? If so, look up her Apgars at birth, her initial blood gases. Check her "snap" score, if your NICU uses that index. What kind of vent was she on, and what settings, and for how long? How quickly was she weaned from her ventilatory support?

What meds did she receive--for example, did she receive prophylactic antibiotics? TPN, for how long? What were her bilirubin levels and did she receive phototherapy?

Did she ever have an infection?
Did she ever have anemia, treated or untreated (with transfusion) or Epoetin or just iron supplements. Did she have a PDA?

Did you provide breast milk? When did they start feedings? Trophic feeds? Did she have feeding issues or feeding reversals? Or did she progress with feeds in a straightforward manner?

Temp instability? Skin breakdown? Did she gain weight daily after the first week or 10 days?

If you, yourself, had no infectious process, you helped Caitlin's odds. The fact that she is female helped her odds. If your amniotic sac was ruptured for more than 24 hours prior to delivery, that fact improved her odds.

There are probably 20 more variables . . . How could we ever come up with a formula, a perfect recipe, combining all the most favorable variables, in order to set everyone up for great outcomes?!

Even if you got a great programmer to set up a computer program that would "select" the most favorable variables, and a decision tree for the practitioners at the bedside, that would help them act at the right moment on every turn of events, on every blood gas and vent setting . . . I think a lot still depends on the "constitution" of the individual. Good genes. Etc.

I have a good imagination, but I cannot imagine how we could alter the endless combinations of NICU treatments and the robustness of the individual child to capture more favorable outcomes.

Chris and Vic

Anonymous said...

Nancy-
Can you please let us know if you rec'd antenatal steroids and if you were on mag sulfate at all. These are conditions I know some doctors are looking at. Mag may have some benefit to the baby and we all know that steroids within 7 days of delivery help the development of the lungs.
I am so happy that your daughter is doing so well. It's very inspiring for me as the mother of a 2 year old 24 weeker.

Nancy said...

"Even if you got a great programmer to set up a computer program that would "select" the most favorable variables, and a decision tree for the practitioners at the bedside, that would help them act at the right moment on every turn of events, on every blood gas and vent setting . . . I think a lot still depends on the "constitution" of the individual. Good genes. Etc."

This is what I meant when I said what I did about things being so drastically different from baby to baby. While some treatments seem to be "run of the mill" in many NICUs, there are so many other little factors that end up playing a major role.

I do wish that Caitlyn's course of treatment could be scaled down to the minutest of details in order for it to be cookie cutter medicine. But it can't be. The simplest factor of genes playing a role would skew that cookie cutter entirely.

I do have a portion of her medical records. Not all of them. So some of the things that you asked, I could answer specifically, others would have to be merely from memory. I'm not sure if you were in fact asking for those answers or if you were just demonstrating all of the different variables that effect outcomes. If you would like those answers just let me know and I would be more than happy to provide them.

Nancy said...

Anon 4:02
I received one shot of steroids approximately 11 hours before Caitlyn was born. I never received the second shot.

I did have mag sulfate for about 13 hours prior to her being born.

Caitlyn was born early due to pre-e and HELLP syndrome.

Anonymous said...

Helen Harrison to Chris and Nancy who said:

"To me, that means that the follow-up people ARE expecting the other shoe to drop at some point."
***

"This is actually a grossly inaccurate statement. The clinic is attended on a voluntary basis. They do not go out and locate children who are at risk, rather, parents have to find them."
****

All children born below 33 weeks are considered "at risk" and those born before 26 weeks are at much, much higher risk -- by definition.

It doesn't matter who initiated the follow-up. And, yes, the experts probably are expecting another shoe to drop because it so often happens -- even when preemies pass the early hurdles.

Kristie gave a good reference to a study exploring the developmental time bombs that accompany the brain growth interruptions of prematurity. I suspect other organs are affected as well.

Sadly, the sleeper effects that Dr. Bennett worries about are real. I wish similar longterm follow-up were available to all "high risk" parents.

Helen

Anonymous said...

That is a modern day Eris at work.

The Preemie Experiment said...

Anonymous wrote: "That is a modern day Eris at work."

A goddess... yep, that's me!

future of hope said...

This is just a rhetorical question - no answer required, I just would like everyone to really think about it. Why are we so quick to accept and sympathize with anyone that has preemie "issues", yet we seem so unwilling to accept the fact that others do not? Nancy's daughter's outcome does not change the ongoing issues faced by my former 26 weeker, yet my son's issues don't change the fact that her daughter is developing NORMALLY. And her daughter is not alone, there are many former preemies out there that are just that, FORMER preemies, that the only reminders they still have of their early birth is the odd baby picture, or the fading "battle scars" on their bodies. While it is wrong for the sole focus to be on the "miracle survivors" ( this is almost said tounge in cheek, because I feel that both of my children are miracles - preemie issues or not) I think it is equally as wrong to discount them.

Anonymous said...

future of hope wrote:
Why are we so quick to accept and sympathize with anyone that has preemie "issues", yet we seem so unwilling to accept the fact that others do not?

I guess my thought would be, if a parent and their child really had NO impacts from prematurity, it seem illogical that they'd be crawling the internet doing searches prematurity and participating on blogs dealing with the lingering impacts of prematurity. Sort of "thou protests too much" ... If they really are free of impacts, they are at t-ball practice and Brownies. So participation here questions the veracity of "no impacts".

Just a thought.

Nancy said...

Anon 11:00

I do hope that you aren't eluding to what I say about my child as not being true?? I would never lie about my child's abilities, or inabilities for that matter.

Isn't is possible that I am curious as to why some of these things did not impact my child? Isn't it possible that I am just overly curious in every aspect of prematurity itself? Isn't it possible that I enjoy reading both sides of the discussion and learn a few things along the way?

I have been on message boards and blogs since her birth and have made many friends via that outlet. Those blogs and message boards have led me to others, such as this one. So I wouldn't classify myself as an someone crawling the internet and searching out prematurity related sites. Like I said, I belonged to a few and they have led me to others.

If that comment was not intended for me, then my apologies.

Anonymous said...

Helen Harrison says:

I personally don't question Nancy's statements here, but I do believe that age 7 is still somewhat early to make definitive statements about being unaffected adversely by prematurity.

Our son's "mild" CP was not officially diagnosed until he was eight. We have situations in which mild autism and other psychiatric problems related to prematurity were not diagnosed until adolescence or early adulthood. Seizure disorders can emerge later in life (we're still nervous about that one, 32 years after our son's preterm birth.)Cognitive and learning problems can emerge as the work in school demands new skills (such as abstract thought). Fourth grade is a major stumbling block for many preemies. And then there is middle school...
Social issues emerge as social challenges become more complex with age.

So many families I know have started out on preemie list and -- when their child is 4 or 5 or 7 declared "all is well" "mission accomplished," etc., and they've left the group.

Then,a few years later they are back on Preemie-child with newly-diagnosed prematurity-related problems.

I don't point this out to diminish anyone's good fortune in having a child who makes it to 7 and is normal. This is a major accomplishment and should be celebrated, but it is not the end of the story, in most cases.

Helen

Nancy said...

Helen, I completely "get" what you are saying. However, this is the point that I am left wondering. If something creeps up in fourth grade where critical thinking skills and abstract thought processes become more important in school, how can one definitely say that those issues are in fact due to prematurity? How do we know they would not have happened had the child been born full term? That's what I struggle with. Obviously there is no way to know what our children would have been like had they been born full term. But that unknown is what I can't seem to wrap my head around.

Also, in terms of things creeping up when they are older, do they really creep up? Or were there signs, albeit subtle, along the way?

I'm truly not asking these questions to play devil's advocate.

23wktwinsmommy said...

I am extremely angered by the anonymous who alluded to the fact that Nancy is lying about her daughter's development and health. She has a public blog and has been an enormous asset to myself and other "newer" preemie parents.
She couldn't have possibly known how well her daughter would be doing when she started blogging/internet searching. If she had come here looking to connect with other preemie parents and Caitlyn was under 3 she would be told it is too early to talk about how your child is doing (unless of course your child is not doing well, then your insight is welcome.) Now that her child is 7 she is accused by one of lying and told by others she needs to continue to hold her breath until her child is...well who knows how old?

Even though my daughter is doing extremely well I never talk about that because I will be told it's too early to tell, etc etc. I talk honestly about the difficulties my son faces, although facing the stats on this tool looking at him nearing 2 years old, he not falling into the majority either. This is not to say either is issue-free, but it is sometimes challenging to talk about the things are kids are doing that we are thankful for, especially when at 7 years old Nancy is basically told just wait until she is older. If this tool is measuring neurodevelopment at 18-24 months can't we celebrate a little if our younger kids are beating the odds at these ages? And even if your child is impaired, can't we accept and understand that some parents don't feel the same way about having an impaired child as others?

Hitting 7 years old without complications is amazing and should be talked about. Just like people should be able to share their child's difficulties related to preamturity at every age.

My (sure to be seen as controversial) opinion is it's a threat to talk about children born below 26 weeks who are doing exceptionally well because it challenges the majority belief here that children born below 26 weeks will go on to have a life filled with suffering and will be a burden on their families. What happens when we start talking about children/young adults who are doing well and/or are happy and their parents are eternally grateful for them? It gets downright scary for those who opted not to resuscitate. I can only imagine how painful the "what ifs" are when we hear Nancy share Caitlyn's story here.

And as for learning difficulties in the 4th grade and beyond...even if we proved that this was linked to prematurity (which I don't believe we could), does this warrant not resuscitating? IF Caitlyn had minor issues with organization and abstract thought is that really a strong cause for chosing comfort care? We are trying to give parents the most information possible to make an informed decision but maybe some parents do not think issues with abstract thought are reasons not to save their child's life.
This is the heart of the argument time and time again. The outcomes are vastly different, and like C&V mentioned, we can't replicate Caitlyn's NICU experience to ensure others will have the same outcome. It's scary to have to make these choices. But just like Helen and Terri w/ 2 are entitled to talk about how challenging their lives are with children impaired by prematurity, Nancy and others should be invited to share their experiences.

Anonymous said...

Helen Harrison to Nancy who asked:

"However, this is the point that I am left wondering. If something creeps up in fourth grade where critical thinking skills and abstract thought processes become more important in school, how can one definitely say that those issues are in fact due to prematurity? How do we know they would not have happened had the child been born full term? "
****

The way researchers study these factors is to follow a group of preemies and a control group of their term born peers over time. They watch how the children's skills do, or do not, evolve over the years.

Abstract thinking capabilities 9which tend to be called into play around 4th grade)and math and writing disabilities are much more common and more severe in preemies. They are qualitatively different from learning disabilities found in fullterm children (who tend to have single disabilities such as dyslexia). Instead, the learning and cognitive problems of preemies are described as "global and pervasive."

There are now studies correlating MRI findings (which are consistently abnormal in preemies compared to fullterm children) to the disadvantages they show in testing and school performance.

And, as Kristie pointed out, studies are now showing that the brain changes seen in preemies are not static -- that as the children age, certain aspects of the brain abnormalities seem to worsen. These changes do not occur in the term born children followed as controls.

Helen Harrison

future of hope said...

Nancy asked: "Also, in terms of things creeping up when they are older, do they really creep up? Or were there signs, albeit subtle, along the way?"

The DIAGNOSIS may not occur to a later age, but the signs will have been there all along. How parents interpret what they see is where the differences lie. If something does truly just "pop-up" at a later age, then I would certainly look for causes other than prematurity.

Anonymous said...

I’m sorry but I just have to comment about this constant focus on the negative and any glimpse of good outcomes are now being questioned and kind of suggested that you shouldn’t share them because it could give others false hope. I abhor the term false hope because hope is not true or false. Hope is the substance that pulls you through the hard times and keeps you from falling into despair. My story is just that, my story. Everyone that blogs here has a story. To tell just the sad stories and proclaim that good ones give others false hope because ultimately the good ones will turn out bad is deplorable. I thought we agreed in telling the truth about prematurity. Studies are not 100% accurate. It is very hard to tell where the side effects of prematurity end and where your child begins. I never realized that until a friend mentioned that she wished she had that excuse, link it to the prematurity. When her son doesn’t follow directions or gets over excited from too much sensory input or gets into a fight at school, it would be nice to say it was related to his premature birth. That’s when it clicked for me. What would my son be like if he wasn’t affected by prematurity? Would he still be left-handed like his father? Would school have come easier? Would I have raised him to be more independent instead of smothering him with my over-protectiveness? Am I teaching him that he is different because of the circumstances surrounding his birth? It took my awhile to understand what my pediatrician meant when she told me to treat him like he wasn’t born premature. He is not separate from his past but it must be left there and more focus has to be on the here and now. He is who he is and that is where the focus needs to be, not on what ifs. And that goes for the future too. Please don’t diminish our fortunate outcome as finite since he is only 6 years old. Do we really need to put any more negative energy out there regarding these remarkable children?

Anonymous said...

Helen Harrison to "anonymous:"

The information you object to is inherent in the topic of this thread, not to mention that of the blog as a whole.

Helen

Anonymous said...

Helen Harrison to 23 week twins mommy who said:

"My (sure to be seen as controversial) opinion is it's a threat to talk about children born below 26 weeks who are doing exceptionally well because it challenges the majority belief here that children born below 26 weeks will go on to have a life filled with suffering and will be a burden on their families. What happens when we start talking about children/young adults who are doing well and/or are happy and their parents are eternally grateful for them? It gets downright scary for those who opted not to resuscitate. I can only imagine how painful the "what ifs" are when we hear Nancy share Caitlyn's story here."
***

I don't think anyone is,
or should be, scared or pained to hear Caitlyn's story, which is a rare outcome and still very much a work in progress.

Parents facing resuscitation
options often want to know: "what is the best case scenario?" "what is the worst case scenario?" "what lies in between?" "how likely are each of these outcomes?" and "with how much pain will these outcomes be achieved?"

If I were a parent facing a resuscitation decision over a <26 week preemie, I would want to know (among other things) how many children who are actively resuscitated (a very painful process BTW)and admitted to the NICU actually survive the further ordeals of intensive care to emerge without diagnosed disability in early childhood (say age 6).

According to the EPICure study, out of 843 infants <26 weeks who were actively resuscitated and admitted to the NICU, only 48 survived without disability that could be diagnosed at age 6.

That comes out to about 6%. So Caitlyn is part of a 6% minority if she has no diagnosed disability at this point.

Other studies have shown a significant jump in disability diagnosis between early childhood
and adolescence. These include problems that are likely to preclude the ability to live independently.

And so, I would urge anyone who wants to use Caitlyn's example to encourage other parents to "go for it" with their 25 weekers, to include the vanishingly small chance of achieving Caitlyn's
outcome, and the important caveat that longer term follow-up is necessary to validate her apparent unimpaired status.

No one would opt to withhold resuscitation on a baby who had a good chance of being normal even if only at age six. But in combination with all the other factors, and the guarantee of major suffering, many would think that a 6% or lower chance of a "possibly" normal outcome is simply does not justify the
pain to the child and the family.

I must also add here that it is hard to read your comments
without sensing that you actually
want to create pain and doubt among parents who opted for comfort care by holding out Caitlyn's case as an example.

I hope that was not your intention.

Helen

Anonymous said...

To Helen Harrison:
I don’t know where you get off in telling me that my opinion has no place or value on this thread or on this blog. Or why you even felt the need to respond to my comment personally. But your remarks were very rude and disrespectful. I do not intend to go back and forth with you on this, as I have witnessed in other threads. However, I would appreciate that you don’t comment on any of my remarks in the future. I will be sure to sign my name as that was an oversight on my part.
-Tammy-

23wktwinsmommy said...

Helen,
If a parent is 100% comfortable with their decision, (you have said many times here that parents who opt not to resuscitate are comfortable with their decision and you have also said you believe many parents who are informed will opt not to resuscitate) then it won't matter what I say.
I have issue with you and others who put a spin on the decision to resuscitate...the pain, burden to family and society, etc. But you'll argue that your just stating facts. Well I'm stating the fact that not all children end up profoundly disabled, and in fact here is Caitlyn unaffected at age 7. That reality I am sure must be painful for some to accept.
A parent has to live with their decision. You would have people believe that the choice to resuscitate results in extreme suffering for the former preemie and parents, this however is not everyone's reality, thereby making the choice not to resuscitate a very tricky one.
I can only imagine how painful it would be for a parent who chose not to resuscitate to be faced with the more positive outcomes. But it's a reality just like the reality that parents face with a disabled former preemie. What should be admitted openly is that neither you nor anyone else can forsee the future when that day comes to make a fateful choice. Outcomes vary considerably and if you want true informed consent then parents should know about children who do come away from prematurity without the examples of suffering you constantly provide them with.

23wktwinsmommy said...

Just food for thought:

Helen says: "many would think that a 6% or lower chance of a "possibly" normal outcome is simply does not justify the
pain to the child and the family."

And I chose to say: some may opt to give their child a chance at life and may see their child's life as valuable even if they have a great chance of having lasting effects from their premature birth. Many people may not equate having a child with a "normal" outcome as the most important aspect of parenthood.

Both statements have value judgements in them and they are differing opinions. In my opinion giving my children a chance at life was worth "risking" disibilities. And when we think about a dx of a disability it does not translate that disability will result in physical pain to the child.

I still think parents should have a right to chose, but I don't think it's right that we hear about the physical pain of resuscitation and the personal suffering experiences but then can't talk about those who are doing well or who are happy. If we are content with our choice we are accused of "assigning value" to our children's lives or trying to justify our choice.

Nancy said...

"Abstract thinking capabilities 9which tend to be called into play around 4th grade)and math and writing disabilities are much more common and more severe in preemies. They are qualitatively different from learning disabilities found in fullterm children (who tend to have single disabilities such as dyslexia). Instead, the learning and cognitive problems of preemies are described as "global and pervasive." "

Children are actually required to use abstract thinking skills at ages much younger than 4th grade. At least in the schools I work in as well as in Caitlyn's school. Not to mention that children at a young age, even late toddler hood, are already engaging in higher level thinking skills. For example, saying to a child that we are going to the grocery store, and they infer that they will be purchasing food items, is considered to be higher level thinking.

As for the difference in learning disabilities between preemies and their full term peers, I can only comment in regards to the full term children as I have encountered far more of those in my career than their preemie counterparts. Learning disabilities in the schools are typically diagnosed by the school psychologist, based on an array of testing (academic achievement, IQ, etc). Thus, many of these children never undergo further testing on the physiology of their brains. At least I have never seen those tests in a child's file that we are referring for special education services based on a learning disability. However, if they also have neurological issues (CP, autism) those tests are often included in their files. My point to this is that the majority of children that I have seen diagnosed as LD do in fact have learning disabilities of a global nature. Not only does it effect their reading, but their writing, and then it trickles over into math reasoning and functioning. As a matter of fact, I have yet to encounter a child who is "just" dyslexic or dysgraphic (for example). So I would question the accuracy of that based on my personal experience.

"And so, I would urge anyone who wants to use Caitlyn's example to encourage other parents to "go for it" with their 25 weekers, to include the vanishingly small chance of achieving Caitlyn's
outcome, and the important caveat that longer term follow-up is necessary to validate her apparent unimpaired status."

I've never proposed that my child, or her outcome for that matter, be the reason that parent's "go for it." What I have proposed is that the possibility is in fact there! Like Stacy mentioned several comments ago, none of the statistics have proven 100%. The fact that she has progressed so wonderfully is in fact the reason for her being in the follow up clinic that tests up until the age of 8. They have considered lengthening the program to continue to the age of 11 as well. If they do that, then Caitlyn will be there for that too. But as I said before, it's not because we are waiting for "the other shoe to drop." Just as you are looking to expose the realities (as much as I disagree with your belief of reality) it is mine as well. I want parents to know that while this outcome is a rarity (as I have stated over and over again) it is still a very real possibility.

Anonymous said...

Helen Harrison to "Tammy" AKA "Anonymous":

There are many preemie blogs and lists on the Internet that will guarantee you sweetness and light. This isn't one of them.

If you come here, and then complain about *not* getting sweetness and light, I can't help that. You will get evidence-based information here -- the documented results of "The Preemie Experiment."

And please remember to sign your name if you want me to know who you are.

Helen

Anonymous said...

Helen Harrison to 23 weeks twins' mommy who said:

"I still think parents should have a right to chose, but I don't think it's right that we hear about the physical pain of resuscitation and the personal suffering experiences but then can't talk about those who are doing well or who are happy. If we are content with our choice we are accused of "assigning value" to our children's lives or trying to justify our choice."
***

Do you really think there is no suffering involved in the resuscitation and treatment of preemies?

I'm sorry to have to state the obvious, but it is huge! It damages the brain *in and of itself*, and the adverse results last for a lifetime. More about this soon...

If you feel so comfortable with your choices, I don't see why you have to constantly defend them here -- as if they were under attack, which they are not.

I'm quite sure no one here has ever accused you of "assigning value," whatever it is you mean by that. As for "justifying your choice" -- well that is between you, your husband, and your children. And if you are all happy, I'm sure everyone here is happy for you.

As for preemies in general suffering is real and the happiness is real and all of it should be acknowledged.

Helen

Kellars Mommy said...

23wktwinsmommy

I too have sat many a days and wondered how parents who did choose comfort care for their child/ren may feel when they see of other preemies doing *well*. When Kellar was 2 days old we were told that we may need to take lunch to discuss discontinuing care, there was no lunch taken and no disucssion needed for my husband and I. Now looking at Kellar I wonder how many parents could have had a "Kellar" but the greater chances of having a disabled child was more than they wanted, this is not a jab at anyone who chose comfort care nor am I being judgmental but the odds that are against these little ones are frightening and with all else that is going on on a daily basis while in the nicu it's a lot to take in. I do wonder if they ever think of that possibility that their little one could have a different outcome, I myself just read a story on a lady that went into labor at 20 wks, she was able to hold off delivery till 24 wks, does that story sadden me? Yes. Why b/c I went into labor at 20 wks with my first child Cameron, could I have done something differently, did I do all I could to hold off labor, should I not have let them give me something after laying in the hospital for over 40 hours hurting and contracting, these are all things that cross my mind. What if things could have been different? Kellar just celebrated his 2nd birthday, as of now we have no diagnosis, sure that could change with the blink of an eye, will I be blindsided no..There was discussion on signs of disabilitys being there early on, I honestly feel that I see something in Kellars gait when he's walking right now, am I hoping that the neuro will drop the cp bomb on me no, will I be caught off guard.. probably not. Do I still feel that Kellar is a exception to the typical 26 wkr w/bilateral brain bleeds and a cerebellum bleed. Yes! Am I already stressing over school, oh my gracious yes..

Anonymous said...

24 weeks 6 days gestation
820 grams 13 inches long
100 days in the NICU
Male, single birth
Reason for premature birth: Incompetent cervix

Now age 6 and 3 months of age and has no major disabilities. Are we 100% unaffected by his premature birth? No, he wears glasses and has mild reactive airway and an overprotective mother. His other medical issues included needing a T&A plus ear tubes (chronic ear & sinus infections) and OT for writing (dysgraphia) & speech therapy. Those three issues can not be linked to his early arrival, since he has two first cousins (both FT boys, one from each sister) who each have dysgraphia and had their T&A removed for the same reasons and one needed speech therapy as well. That is why it is hard to distinguish the child (his genetic dispositions & who he would have been) from the effects of his premature birth. Favorable outcomes do exist. Are we out of the clear? No, that is why we do follow-ups with specialists. For anyone out there considering to resuscitate or not to resuscitate, please do not rely on our story as results are not typical. For anyone out there who chose not to resuscitate, my choosing to share our outcome is not intended to hurt you in anyway. I would never intentionally hurt another human being or make comments to devalue them in anyway. My story is simply the outcome we have incurred thus far.
Tammy

Anonymous said...

From Helen Harrison to Nancy:

I can only tell you that researchers around the world using control groups of fullterm peers compared to preemies have come up with very different conclusions about the nature of learning and cognitive impairments in each group.

When time permits (and it doesn't just now) I will give more in the way of specific references.

But, for the time being, if you want to go to Medline, look up studies by Michael Whitfield in Vancouver, or Dieter Wolke, with EPICure and the Bavarian VLBW study to get started.

Helen

23wktwinsmommy said...

Helen, as an intelligent woman I'm surprised that you completely overlooked my point. OF COURSE there is pain in resuscitating, but what I am saying is, if we can talk about the painful things linked to prematurity then we should be able to talk about the positive outcomes and positive outlooks on an individual's premature child. It seems to me that as soon as you wanted an example of a former preemie doing well and Nancy chimed in, her experience was not worthy because you argue her child is still too young. In my opinion, this quick rush to discredit her story by anonymous and your continued examples of how magically something will probably go wrong as she gets older shows that you only want to focus on the suffering attributed to prematurity.

As for assigning value, I gave you that very statement that was used here before when you said no one has ever said anything about assigning value to children here. As you tell so many others to do, you can look back to past posts and find it. You always accuse anyone who talks about why they made the choice they did (if the choice was resuscitation) of trying to justify it and somehow by talking about the reasons behind the choice that translates to not being comfortable with it. You are able to give example after example of why you believe resuscitation below 26 weeks is not a choice you'd make should you be faced with it. You have studies to back your reasoning and take a very unilateral approach to your decision...here are the statistics, here is the choice.
The only "evidence" I have for the choice I made is my own personal experience which is tightly wound with my belief system that the disabled are valuable and should not just to thrown aside.

The insinuation that those who talk about why they resuscitated are somehow uncomfortable with their choice is insulting and untrue. It's why I brought up the "justification" point in my comment because you have said this to parents who state they are comfortable with their choice before. I figured you'd resort back to it.
You talk about the difficulties your son faces often and he is 32 years old. Do I say you haven't come to a place of acceptance after 32 years? No. You have a right to tell Ed's story over and over because it's important to give a backround to your views and experiences with prematurity. Likewise, others should be invited to share their experiences with prematurity so there is some balance here. The whole idea is to give info to parents who may be faced with this choice. Your position is clear, if you discourage or downplay the importance of what others say, then you're going against what you supposedly believe...which is parental choice. If I didn't talk about my choice, if Nancy didn't talk about Caitlyn, if future of hope didn't participate, or Kellar's Mommy, etc then this would be a place for you to talk to yourself basically...how fun. This is a place of balanced discussion, and parents faced with this choice should be able to hear from both sides.

Kyrsten said...

Here we go again...

If I can jump in here, I *do* feel that people get very defensive when Helen points out something that isn't "sweetness and light."

Should I get defensive, too? Can I read into comments as well, and stop commenting here because my husband and I were "wrong" to not give my preemie son a "chance?" (Because I feel that *is* very much a relevent discussion: what if you choose resusitation, only to have to make the choice to continue life support a few hours/day/weeks later?)

I would have given *anything* for my son to have lived, disabilities or not. --And before anyone says, "I understand that," stop and ask yourself, do you really? Because I've seen people in the same post say they understand that others love their children, then call them names because they aren't putting forth "best case scenarios!"

But you know what? I wish with all my heart that he *hadn't* been resusitated in the first place!

It seems that we are all searching for a balanced discussion... but it does seem very one-sided at times: against those who say anything "against" a child's chances of emerging unscathed!

I want the best case scenarios! I want this new child to be born full-term, with no physical or mental limitaions! --But, I've been through the worst case scenarios, and it tempers my thoughts.

Let both sides speak! Argue, be passionate, but stop saying someone is *wrong* because of their opinions or experiences; this is not a black and white issue!

Kyrsten said...

Side note-- there is a new post on a general preemie health board from a mom, asking for information on 25-weekers who are school-age: their outlook for the future.

She needs to hear everything, don't you think?

Anonymous said...

Helen Harrison to 23 weeks twins mommy who said:

"if Nancy didn't talk about Caitlyn, if future of hope didn't participate, or Kellar's Mommy, etc then this would be a place for you to talk to yourself basically...how fun. This is a place of balanced discussion, and parents faced with this choice should be able to hear from both sides."
***

For a while, not too long ago, I remember you and your group leaving in a snit saying you'd never come back, and that, without you, The Preemie Experiment blog would surely fold from lack of interest.

That didn't happen. Stacy has a large following -- many are physicians, academics,and other medical professionals as well as parents. Blog readership remained high and interesting, even without your constant presentation of "the other side" -- whatever you mean by that.

And predictably, sooner rather than later, you came back because, I suppose, there wasn't enough emotional drama for you on your own lists.

This blog is called "The Preemie Experiment", and it is about reality and evidence. If you present distortions of reality or or misleading evidence, people will call you on it, and that is not being negative.

Saying that Caitlyn's excellent progress to date is still a work in progress is *not* being negative or attacking anyone. It is simply a statement of reality, and a caution to those who would use her example to try to browbeat and guilt-trip others.

Of course we can talk about happiness in our lives and our children's lives on this list, as well as the pain, and I have said so many times. But I hope we can do so realistically and non-judgmentally.

Helen

The Preemie Experiment said...

I think the biggest problem that people are having, when they come to this blog, is the topic of putting a limit of resuscitation based on gestation.

If we (myself and others) had never mentioned our thoughts on the subject there would not be near the amount of anger that people display in their comments.

We would be talking about the "good, the bad and the ugly" side of prematurity. We would be discussing triumphs, trials and tribulations. We would be sharing pictures and talking about the new life we lead.

Does this type of support belong in the cyber world? Absolutely. It exists many times over. We can go join many on line support groups and do all of the above actions I mentioned.

This blog can be all of that too but it will ALWAYS include discussions about how I (and others) feel that the line has been crossed with regards to resuscitation. It is something that I feel is worthy of discussion and action.

Not everyone chooses to resuscitate. Their decision is not wrong. I personally feel the choice is one made out of love for the child.

If you did resuscitate, am I saying that you did not love your child? Absolutely not. I will say it again... I chose to resuscitate Paige.

Am I, and others, who feel that a line has been crossed in the medical world a horrible person? Are we monsters who are trying to create a perfect society??

NO.

We are people who love children and care that parents are not being told the whole story before they make their choice. We are people who have seen the effects of pushing the limit of viability.

I personally hate the arguing. I don't do well with it in my life. But, the blog will not go away. I will continue to post and urge all to continue to comment.

future of hope said...

Helen Wrote: "Saying that Caitlyn's excellent progress to date is still a work in progress is *not* being negative or attacking anyone. It is simply a statement of reality, and a caution to those who would use her example to try to browbeat and guilt-trip others."

This is almost a "Duh" statement. EVERY 7 year old is a work in progress! I don't care if they were a 24 week preemie, or 2 weeks overdue. No one knows the future. However,I do think that suggesting that the parent of a bright, healthy, socially well adjusted child should still live in watchful fear of the "other shoe" and expect future preemie issues comes across as slightly paranoid, and most certainly stretches the studies to their breaking point.

23wktwinsmommy said...

I am not advocating that this type of discussion ceases...what I am suggesting is that there is a resistance to discuss those who are not severely impaired by prematurity. Maybe I am biased, but I happen to notice a resistance.
So if this is an evidence based blog, then I'd ask for the stats on how many former preemies at age 7 who present no apparent issues go on to present with significant issues likely linked to prematurity in adolescence and adulthood.
If we should be cautious about saying a child is unaffected at age 7 then we should know statistically why that is.

Anonymous said...

Helen Harrison to future of hope and 23 week twins mommy who said:

"This is almost a "Duh" statement. EVERY 7 year old is a work in progress! I don't care if they were a 24 week preemie, or 2 weeks overdue. No one knows the future. However,I do think that suggesting that the parent of a bright, healthy, socially well adjusted child should still live in watchful fear of the "other shoe" and expect future preemie issues comes across as slightly paranoid, and most certainly stretches the studies to their breaking point."

and

"If we should be cautious about saying a child is unaffected at age 7 then we should know statistically why that is."


****

Of course all 7 year olds are works in progress. But, more often than not, preemies "progress" toward disability as they grow up.

I don't think parents need to live in terror of another shoe dropping, although expecting future problems is realistic.

I *am*, instead, simply suggesting that age 7 is too soon to declare a preemie to be unimpaired or unaffected by prematurity.

You asked for stats, 23 week twins mommy, so here is some data that relates to bigger preemies.

O'Brien et al. "The Neurodevelopmental Progress of Infants less than 33 Weeks into Adolescence," _Arch Dis Child_2004:89:207-211.

Their findings:
Between the ages of 8 and 15 the percentage of children with disabilities doubles. IQ drops by 10 points. Whereas 65% of these (relatively big) preemies were classified as "normal" at age 8, only 27% were "normal" at age 15.

The authors further state: "It is nor clear whether[these findings represent] a genuine deterioration in neurocognitive function or ...the expression of pre-existing cerebral pathology in an increasingly complex environment."

It should be noted that <26 week preemies, by age 6, already have an 80% incidence of impairment, by age 11 this rate has risen to
86%. [EPICure study data] We do not yet know how these children will do at age 15.

Helen

Nancy said...

I say again, emphatically, I have never used my daughter's outcomes to tip the scales or "browbet and guilt-trip" others. Which by the way, I take great offense to the latter description in that paragraph. GREAT offense. I will, however, continue to use her as an example of possible outcomes. Just as you, Helen, and you, Stacy, use Edward and Paige to define results of pushing the limits of medicine. We discuss our children in order to represent the effects of prematurity. And as far as I can tell, Caitlyn's outcome is as valid as that of your childrens. I would ask in the future that it not be said that I am using my child's outcome to convince anyone to do anything. That is hardly the case.

Secondly, my daughter is not a work in progress, she is my child. I don't consider her to be anything but that. If others view their children as works, that's fine. It's not how I view my daughter in the least. Yes she is work to raise and often it feels like a job in and of itself. But I am a parent first and foremost and I do not view her as an experiment.

It has never been my intention to make a parent feel guilty because they chose not to resuscitate. If any of my comments have had that effect, then I apologize. I can not even for a moment pretend that I know what it is like to make that decision for your child. When I share information about Caitlyn, it is not to make parents who chose comfort care feel badly about their decisions, that has NEVER been my intention. As I stated before, I am only sharing "my" personal outcome.

Anonymous said...

Helen Harrison to Nancy:

No, *you* did not do anything to make anyone feel guilty. 23 week twin's mommy did, however, when she imagined, with apparent glee and relish, the guilt and pain and "what ifs?" your account of Caitlyn's life would induce in others who chose not to resuscitate.

Although your daughter sounds quite wonderful, her case was being used as an example of a final preemie outcome and in that sense she is still very much a work in progress (see my previous post.)

This is not about how you feel towards her; it is about creating an accurate understanding of what outcomes at age 7 actually mean to other parents who may be interested.

Helen

23wktwinsmommy said...

I wasn't intending to make feel guilty about choices. Rather, I believed that Nancy was being told Caitlyn's story wasn't valid because it went against the common belief here that resuscitation below 26 weeks results in extreme suffering and a burden on families and society.
I was suggesting that there will be an attempt to silence or discredit people speaking about preemies doing well because it goes against the grain here, and I can imagine how painful it would be to hear about children doing well for those who opted not to resuscitate at the same gestational age. I can imagine thinking in those terms because I myself made my son a DNR and I know the pain in having to make these types of decisions.
What I don't think is right is that just because it may cause others to think about the "what ifs" or because it goes against others stories about suffering of former preemies that these stories be dismissed or discredited.

And I'm not accusing you Helen of discrediting her, it was an anonymous who did that.

23wktwinsmommy said...

I don't want to argue this point over and over. I have finally found the words that speak much louder than anything I've ever tried to say. So from now on whenever the issue of resuscitation comes up...here is my response. These words come from an adult former preemie who is blind as a result of ROP. The website is http://www.growingstrong.org/rop/preemie.html

She writes:
The debate over "viability" distresses me greatly because I often perceive that disability is considered a justifiable reason for not saving the life of a child. I know how to think about this rationally, but doing so is a difficult task. I, like many adult preemies, am greatful for my life. Certainly there are times when depression and even suicidal thoughts take hold; but I don't know many people who have not struggled with these things whether or not they have disabilities. At the same time, I also recognize the impact of pain and the need to be able to choose not to subject a child to painful experimental procedures.

The real issue in this debate is informed choice. I support informed choice. I support truly informed choice. That means not only having information about risks but also being informed that disability is not necessarily tragic, that it need not destroy quality of life. It means being informed that resources exist to help families cope and learn to accommodate the needs of people with disabilities. It means knowing that every family responds differently to disability. One family may find the care of a child with severe disabilities to be overwhelming; another may acknowledge that it is difficult and emotionally draining but welcome the opportunity and strive to enable the child to achieve her full potential, regardless of how that potential compares to what is "normal" in our society.

Kristie McNealy said...

The problem right now, is that some are looking for PROOF of increasing disability, which is fine in itself. But, if we actually did have a good study that followed a single set of preemies up to age 20-25, and it showed problems increased with age, then the debate would turn to the fact that these preemies were born 25 years ago, before surfactant, etc, etc.

Unfortunately, it will be 20 years before we know what many of our kids look like as adults, and unfortunately, people making the decision to resuscitate now have to make it based on many unknowns.

Parents should know all possible outcomes. There is such thing as an appropriate time and a place though. When dealing directly with a parent who has chosen not to resuscitate, a comment about a perfectly normal 24 weeker you know, is just about as helpful and compassionate as telling someone who has already terminated life support for their brain dead relative that you know someone who was declared brain dead, and was kept alive by machines for years, only to wake up and miraculously be normal.

Accurate information is needed, but there are times when it can be just plain hurtful, and of little use. I have a friend chooses to share the great outcome an adult friend of hers has had with her prematurity every time we find some new problem with Camden. What am I supposed to so with that information? Feel bad that our outcome was worse?? BTW, this friend has CP and some other medical problems, so in reality, she isn't unaffected. She's just affected differently than Cam.

-Kristie

23wktwinsmommy said...

Kristie,
I agree with what you are saying about a time and a place and when things are helpful or not, but that's just it. This is suppose to be a place where we can openly discuss outcomes. I agree that Helen should be able to post studies, however "negative" some may see them, and have supported her doing so many times when others have been upset by them.
And Nancy wasn't holding Caitlyn up as an example of why you should resuscitate!!! Helen was asking about hearing from the unaffected and Nancy chimed in. Even if only 7years old she shared her experience.
We should be able to do this without worrying about hurting people's feelings who didn't resuscitate, just like Helen and others should be able to talk about the "not so great" in some people's eyes, outcomes.
That's what I have been trying to say and sorry if it didn't come out that way before.

Anonymous said...

I understand the ongoing argument here differently. And I can relate to both sides, actually.

At times, the argument seems to be about resuscitation of preemies who are less than 26 weeks . . . At this particular time, the argument seems to be about being okay with our kids as they are, whether severely affected or unaffected. At times, the argument seems to be about parental choice . . .

Really, I think the questions can be reduced to a more basic question: Should you try to be at peace with what-is, or should you keep up the outrage about how this branch of medicine cavalierly goes about saving babies without regard to quality of life and follow-up care; and without regard for parental input?

I think you can and should do some of each, by turns, perhaps. You should accept what-is right now--that is, live one moment at a time with your beloved child. AND you should call medicine into accountability. Medicine has used its power to make mistakes--which are often not acknowledged--and sometimes, to make monsters (please don't think I am talking about ex-preemies when I use this figure of speech). Medicine has failed to follow up on what it begins.

The preemies and the soldiers coming back from Iraq are not being followed up upon. Our culture STILL deifies doctors and in so doing, lets them get away with these unpardonable mistakes and this unforgiveable lack of follow up. I am continually astounded about this extensive problem--the scientific method demands outcomes and follow up, and these are scientists who are ignoring the scientific method in their science!

Helen wants to hold their feet to the fire. Helen wants to keep up the outrage. Others want to be at peace with what-is. Others may do what I do, that is, feel/do each by turns.

If we choose to be at peace and grateful for what-is, do we risk slipping into complacency? Yes! I think so!! If we choose to be militant in calling medicine into accountability for its not-well-though-out practices, do we increase the chance for better standards/practices? Yes! We do!!
And, if the 2nd part is true, we improve the chances for future preemies and their families to have better quality of life, I believe.

Chris and Vic

23wktwinsmommy said...

Great insight C&V.
I can see how I will come to be more angered/passionate about how we have been failed in terms of follow-up. I have always admitted our micros are experimented on, and came to see this first hand as we began our NICU experience.
I have also called into question why our NICU follow-up clinic only wants to see the kids until age 3. A few weeks ago when we went I asked them point blank why this is, and how they know how these kids do long term if follow-up ends at only age 3. There were no answers. I do credit this blog for making me aware of how wrong it is for follow-up to simply end at age 3. I credit this blog for giving me tools that I know will help me be a better advocate for my children. And I credit this blog for helping me see the possibilities and probablities as my children get to school age and beyond. I will never claim ignorance, and this will make me a better parent to my children.
So even when we disagree with certain aspects, there are some things that are fundamentally the same...I think we agree that informed consent is important (I also like the part of informed consent added by the adult former preemie I quoted in above) and that we need more long term follow up care.

The Preemie Experiment said...

23wktwinsmommy wrote (quoting Sarah Blake) "I, like many adult preemies, am greatful for my life. Certainly there are times when depression and even suicidal thoughts take hold"

I have known Sarah for quite a few years. I have immense respect for her. She has helped me to better understand Paige, on many occasions and in many areas.

I am hoping Sarah will chime in here too but, let me say that she too would be able to tell you that besides myself, she herself knows adult preemies that struggle. It is actually because of them, and the future of all our of kiddos, that I am able to continue. On days when it all seems so overwhelming, I think about those that have come before Paige. They should not suffer for no reason!

The Preemie Experiment said...

Chris wrote: "If we choose to be at peace and grateful for what-is, do we risk slipping into complacency? Yes! I think so!! If we choose to be militant in calling medicine into accountability for its not-well-though-out practices, do we increase the chance for better standards/practices? Yes! We do!!
And, if the 2nd part is true, we improve the chances for future preemies and their families to have better quality of life, I believe."

As always, so very well said Chris!!

Hugs!!

Anonymous said...

Helen Harrison to 23wk twins' mommy and to Stacy who quoted Sarah Blake saying: "I, like many adult preemies, am greatful for my life. Certainly there are times when depression and even suicidal thoughts take hold"
***

I have also seen a documentary, made by the BBC, on ROP in which blind preemie adults are taken to a NICU in San Francisco to touch the preemies and "see" what being such a small, sick baby is like.

At the end of the tour, a nurse asks one blind young man: "Do you think what we are doing here is right? Would you want this care if your child were to be born as prematurely as you were?"

The young man begins to sob, and says "No!...No!...No!!![...not given all I've gone through]... "It isn't right."

I have spoken with other adult preemies who feel the same.

So there are many perspectives, even among former preemies.

Helen

Kristie McNealy said...

Ugh, I wrote a long comment and lost it. In brief here goes...

To 23weektwinsmommy: I was a little unclear before. In most cases, this is a fine place to discuss all outcomes if it is done in a way that is non-judgmental of the decisions of others.

To Chris: Well said. I think people tend to jump to the conclusion that we don't value, or love, or even like our own kids if we have any anger at all for medical professionals. I don't mention my love of my preemie because I think it is a given. I'd rather discuss the real issue. In my mind, that is where have we/they gone wrong, what are the impacts, and how can we make it better for future preemies??

Sheila said...

I honestly don't understand why some of the vistors to this blog are so vociferously upset about open, honest discussion of the unpleasant side of prematurity. There seems to be a constant theme from those who want to make sure that "balance" exists here (ie... that good outcomes are mentioned as counterpoint to every negative outcome thread) that left unchecked the honesty would negatively impact the neonatal industry. The way I see it is that the rosy side of neonatalogy has the ONLY public voice. Miracle survivor stories flood the airways but rarely do the lives of the majority of preemie parents make 20/20 or the evening news. We don't want to look at that. The McCaugheys stopped being the darlings of the media when it became apparent that their 'miracles' had CP, and VI and etc..etc ... There is no shortage of outlets for the voices that wish to talk about the 'miracles' of prematurity. What there IS a lack of ... is venues for people who AREN'T living the "preemie dream" ... who are taking care of preemies who can never live alone and are now too big to lift into a bath tub or a van ... and when they look around ... they are alone, their families may feel sorry for them, but they aren't willing to come in a bath their 17 year old son, or risk him having an intractable seizure in their pristine living room so they might give the parents a night off. The parents sit in quiet desperation wondering how long will their bodies hold out, they pray for their own health and their own strength. They agonize about what will happen when they are gone. They have no media champions. They have only other parents who made the same decision they did ... They find the subtext of "no one knows what to expect when they have a baby" to be totally disingenuous because they know that save for their child's lost gestation and the aggressive measures required to 'save' them, they'd have an entirely different experience.

Personally, I'm offended by the posters here who imply that parents who decided against resuscitation would probably feel bad hearing about a "good outcome" from the gestation their pregnancy ended at ?? The flaw in the logic here is egregious. This logic means that everyone who didn't buy a lottery ticket in their states lottery should feel bad - because every single week someone wins the lottery. Parents who decide againt aggressive care models don't care about someone else's winning lottery ticket ... they care about the millions of fellow losers.

It's extremely dissapointing that folks whose position is so clearly in the mainstream, who have the support and voice of the media, the Moral Majority and the rest of the bible thumpers feel the need to come here and attack a few parents who are simply trying to give the overburdened, traumatized and disenfranchised families a place of comfort and support. It seems the sheer essence of bullying.

Sheila

Anonymous said...

"need to come here and attack a few parents who are simply trying to give the overburdened, traumatized and disenfranchised families a place of comfort and support. It seems the sheer essence of bullying."

I'll tell you what Helen tells everyone else. This is a place of open and honest discussion, not a support board. If you don't like it, then simply don't read it.

Sheila said...

I'll tell you what Helen tells everyone else. This is a place of open and honest discussion, not a support board. If you don't like it, then simply don't read it.


True, but discussion is discussion and bullying ... is still bullying regardless of how right you may feel it is to do it.

I am not someone who has come here and tried to tell Stacy that she MUST present the rosy side of prematurity. That's not discussion. That's though policing ...
Sheila

Anonymous said...

"I am not someone who has come here and tried to tell Stacy that she MUST present the rosy side of prematurity. That's not discussion. That's though policing ... "

Sure that's bullying. But not including both sides is anything but a discussion. Oh wait, it is a discussion, just really one sided.

Kellars Mommy said...

**the rest of the bible thumpers feel the need to come here and attack a few parents who are simply trying to give the overburdened, traumatized and disenfranchised families a place of comfort and support. It seems the sheer essence of bullying.**

I hate to be the one to point out the obvious but their is so called bullying going on by both sides, which I personally don't see bullying as being what is going on. Helen is passionate about getting the whole truth and nothing but the truth out just as parents like Nancy, 23wktwinsmommy and myself are very passionate about trying to get the word out that there are some outcomes that don't fit your typical preemie outcome. Does one side deserve more attention than the other? Just b/c your child falls into every preemie related category there is does that mean that your desire to get the truth out about your experience has any more bearing that a story like Nancy's daughters who as of yet is showing no ill effects from being born prematurely? If the purpose is to make parents aware of what they could face and it is really about parental consent there should be no issue what so ever with someone telling of their childs outcome whether good or bad. Do I feel that to tell a parent that they should basically not count their chickens before they hatch so to speak b/c they are still young and some problems arise later in life is wrong, yes I felt that was out of line, can she not be happy with where she is now and do as so many parents I know with a premature child and just take it one day at a time? I didn't see any comments that should have made a parent who chose to provide comfort care only feel that they were being judged or they were wrong for their choices. I have said more than once that as a parent it is/should be your choice, and maybe b/c I told of the choice we made with Kellar and the fact that I at times wonder how many parents were presented the same grim statistics and possibilities and chose not continue care, looking at Kellar now I wonder if there would have been other outcomes like his so far. Do I sometimes think of other parents who were in a situation like the one I was in at one time, yes I do b/c it was a hard situation and I know the fear I felt and I'm sure that same fear has been felt by each and everyone of us. Do I or would I ever look down my nose at a person who chose comfort care only b/c their child was a 26 wkr and they did not continue care, of course not.

C&V as always you have such a wonderful way with words!!!

Kyrsten said...

"Now looking at Kellar I wonder how many parents could have had a 'Kellar' but the greater chances of having a disabled child was more than they wanted, this is not a jab ...[but] I do wonder if they ever think of that possibility that their little one could have a different outcome..."

There is rarely a time that goes by that I don't think about it (a different outcome for my Jonathan).

And,

"The only 'evidence' I have for the choice I made is my own personal experience which is tightly wound with my belief system that the disabled are valuable and should not just to thrown aside."

I, too, have a belief system that tells me every life is valuable. But one thought that plagued me (from that same belief system) was, to what degree do I (or the medical community) have the right to play God?


------------------------------

I can't be upset at reading good outcomes any more than I can be upset at friends who conceive easily and have full-term births! I think it's human to feel pangs of jealousy or wistfulness, but I long ago recognized the need to get off the pity trip and get on with it... which is easier some days than others.

Different preemies, different outcomes. Sometimes I feel like a dog chasing its tail.

sylviemomtolilikelockeanjeni said...

I remember seeing the hallway of photos of tiny preemie miracle babies nearby the Flinders NNU from an earlier tine. And I saw a set of twins with the baby boy passing away within 24 hours. His name was Thomas and his sister Sarah survived her premature birth. I often wondered about the little babies at the back. When I went into the room to pump milk for Lilike I met a mom who had twins she so so kind! And I remember the group of parents who I sat down with and one mom talked to the group of new NNU moms about her miracle son. Later I saw the same lady at a photo shoot what was set up to raise money for the Flinders NNU. 6 weeks later I met that lady with the miracle son and let her hold Lilike. They say preemie girls have a greater chance of survival. With todays medical nicu knowledge preemie boys and girls are surviving more and more. But the outcome of the quality of life differs with each child.

Lilike was born at 39 weeks (full term) on June 25th 2003 at Noarlunga Health Services Emergency Department via rapid birth. And spent 9 days in the
NNU at Flinders Medical Centre in Adelaide.
Due to suspected sepsis (blood infection) from a high white cell count and placed on 7 days of antibiotics. 5 days through an iv in her arm with a splint and 2 days of thigh injections when they could not find a vein after chaning there minds over a scalp iv when I wanted to come back and keep the hair. It later turned out to be that Lilike had TTN (wet lungs) present at birth.

Lilikes One True Media Slideshow:
http://youtube.com/watch?v=7ZuXCtO19pA

Lockes One True Media Slideshow:
http://youtube.com/watch?v=9mQIOTIQa6k&feature=related

Pictures of Lilike Judith Elisabeth
Locke Christopher Stephen &
Anjeni Katalin Nicole Weisz
(Due July 28th 2008)
http://www.cafemom.com/home/sylviessweeties

23wktwinsmommy said...

I quoted Sarah because her words fit exactly with how I feel about the resuscitation debate. I did not quote her to try and claim that *all* former adult preemies are grateful for their lives.

Some of the exact things she said I have been trying to say for a long time...specifically: "The debate over "viability" distresses me greatly because I often perceive that disability is considered a justifiable reason for not saving the life of a child...At the same time, I also recognize the impact of pain and the need to be able to choose not to subject a child to painful experimental procedures...I support truly informed choice. That means not only having information about risks but also being informed that disability is not necessarily tragic, that it need not destroy quality of life...One family may find the care of a child with severe disabilities to be overwhelming; another may acknowledge that it is difficult and emotionally draining but welcome the opportunity and strive to enable the child to achieve her full potential, regardless of how that potential compares to what is "normal" in our society."


Both Stacy and Helen were quick of course to remind me and us all that not all adult preemies are happy with life...nor are a lot of nondisabled adults, and interestingly enough Sarah mentions this right after her admitted struggles at times. (see quote.)
If you READ my comment, I said I finally found brilliant words to aritculate how I feel about viability and resuscitation; which is helpful for me because it is relatively consise and encompasses why I feel the way I do about the disabled and parenting potentially disabled children.
Just in case you didn't catch it the first time, again, I did not quote Sarah to try and claim that all adult preemies are grateful for their lives or to make any claim on how adult preemies feel about the resuscitation of preemies today.

Kristie McNealy said...

I don't think there is a single preemie parent (whether their child survived or not) who hasn't wondered what things would be like if they had done *something* different. For me, it is what would have happened if I had accepted that second round of mag they wanted to give me, instead of arguing that they try something else first, and ending up on nifedipine. I can never know.

For others the what if will be resuscitating, or not. Removing care, or not. Being term, or not.

I think all parents of children who have died or babies who have been lost, think about the what ifs too. Would they have liked math or been good at gymnastics, what would they have thought about x,y, or z, etc??

All we know is what is, and what the possibilities are for tomorrow. We can't know what our children would have been like if things had gone differently, but we all wonder, even if we won't admit it. The mere act of wondering, doesn't make choosing not to resuscitate wrong.

-Kristie

Anonymous said...

From Helen Harrison to 23 weeks twins' mommy who describes being "agonized" over the viability discussion:

I would like to invite any former preemies or preemie parents who feel "distressed" by the viability debate, to come to the hospital with us when Ed needs surgery for his many prematurity related issues.

What *he* feels is *real* distress -- agonizing, unrelenting pain.

If subjecting my son (and so many other similar preemie survivors) to life-long agony is necessary to make you feel better about yourself or your child, then, I'm sorry, but I am with my child and his best interests here -- and they are not yours.

Helen

23wktwinsmommy said...

I don't really understand what that was all about Helen. But just because the resuscitation dilemma is a difficult or distressing debate, I don't see how that relates to your son's medical issues. It's an agonizing debate because it's not easy. It is ditressing because it is a delicate balance between justifying the death of a child based on possible, even probable disabilities and painful experiemental medical procedures. (did you even read Sarah's quote Helen?)
There are no easy answers...this is why it's distressing. And coming from someone who actually had to make this choice...who had the option of not doing anything versus intervening medically...let me assure you, it was distressing and agononizing.
I would never try and discredit the pain Ed endures and I feel extremely badly that he and ANY person suffer medically. We take your word for how difficult things are Helen, no one is suggesting what Ed endures is anything other than what you say. But this is about the distress that the viability debate brings, chiefly in this thread, babies born below 26 weeks.

Anonymous said...

Helen, I don't mean any disrespect here and I think you will understand my position as you are usually the first person to point out when a comment is off-topic.

I don't really understand how Ed's situation is relevant here. The NIH study and the discussion here is about the outcomes of micro preemies, babies born before 26 weeks, Ed does not fall into that category. I do believe that your research and insight to the medical field are invaluable but to start bringing Ed's condition into the discussion takes us totally off topic. You are not the mother of a micro preemie but a baby born very close to term with major complications- this is very different that what is being revealed by the latest research- which is what Stacy's post is about. I think Ed's condition and his suffering are important but don't fit into this discussion.

Anonymous said...

I think I figured it out, at least for me. We all understand the dreadful choice faced not to resuscitate and no one here is saying that choice is wrong. Even though there is a common thread amongst prematurity, each child and situation is different. Everyone sympathizes as each of us has stared into the isolette. I personally have been feeling, not being presumptuous or trying to put motive on others typed words, that empathy is not being presented to those who choose to resuscitate under 26 weeks gestation. What is being presented is that it would be simply a selfish act knowing the statistics, the pain you will inflict on a child and the lifetime of uncertainties; that even if only 1 child survives 100% unaffected that in it self will not justify the 500 other children that will suffer from disability. And even if you don’t see disabilities as inherently bad but just an obstacle, you are not being fair to the child who has to live with the disability forever. But not everyone makes their decisions on statistics or views disabilities the same way. I believe these decisions are based on the information you are presented with, your personal belief system and basically through gut retching agony. Something inside of you determines the best way to proceed in your particular situation. There is no easy answer. It’s a conundrum. Some will choose to and some not but both paths are lined with guilt and both need acceptance. I think that it why when we talk about this that it strikes a cord so deep in our souls that the backlash is undeniable felt through typed words.
-Tammy-

23wktwinsmommy said...

Very well said Tammy.

Kellars Mommy said...

Very well said Tammy!!!!

Kyrsten said...

"There is no easy answer. It’s a conundrum."

Yes, exactly.

Anonymous said...

Helen Harrison to 23 wk twins' mommy and others who state they didn't understand what I was trying to say:
***

Edward's outcome is similar to that of *many* of the children being discussed here (<26 weekers) even though he was 29 weeks gestation.

In Edward's case, the severity of his complications were what made him eligible for decision making, not his gestational age, but the outcomes are the same.

Like many other handicapped children, he not only suffered horribly in the NICU, but has continued to suffer medically off and on for 32 years and counting.

This (or worse) is an outcome parents can reasonably expect if they decide to ignore the odds and "go for it" with an extremely high risk baby.

A friend's adult preemie child, is, right now, suffering medical torments I wouldn't wish on anyone. This was a child neonatologists (and their life-at-all-costs supporters) insisted on saving for ideologic, emotional, monetary, and other reasons that totally ignored the child and family suffering.

While it hasn't been that bad for my son, it has still, on balance, been more pain than happiness for him and for us.

Those who have their feelings hurt, or who otherwise find it "distressing" that some parents chose (or are allowed to chose) to spare their babies such agonies should honestly confront the pain (to the child) that so often await.

Sarah, who is not nearly as disabled as my son, seems to be suggesting in the passage quoted, that babies such as my son should be kept alive whenever possible to assuage any potentially hurt feelings of surviving preemies.

If this is indeed what she is saying, I think it reflects a very incomplete understanding of the suffering such a policy entails.

Sarah is almost certainly talking primarily, if not exclusively, about neonatal pain. But the agony, all too often, only begins in the NICU.

Sarah is bright and capable of understanding what is happening to her and of cooperating with her medical care -- care which is far less complex and painful than that of my son, and others like him, who cannot understand and to whom it all seems like random torture. (And yet, Sarah discusses suicidal fantasies.)

People who wish to disregard the statistics hoping for a miraculous outcome are actively encouraged to do so by the neonatal establishment and by(a largely clueless) society.

You, who chose to resuscitate despite the odds will be treated most places as heroes -- at least for a while... at least until you start asking society to help in any major way to help pick up the tab.

In time, you will almost certainly see how shallow this support really is and how painful life can be for impaired preemies and those who try to care for them.

To any of you who who still don't understand what I mean, I can only say: wait a decade or so with your own children. Meanwhile, go out and visit the longterm care facilities where so many of our children will end up, talk to the families who are too old to care for their preemies any longer, and then get back to me and we can talk about "distress."

Helen

terri w/2 said...

Anonymous said "I don't really understand how Ed's situation is relevant here. The NIH study and the discussion here is about the outcomes of micro preemies, babies born before 26 weeks, Ed does not fall into that category. I do believe that your research and insight to the medical field are invaluable but to start bringing Ed's condition into the discussion takes us totally off topic. You are not the mother of a micro preemie but a baby born very close to term with major complications-"

WHAT the h are you talking about?

Helen's son was born at 29 weeks, which is certainly very preterm. The complications he endured at his birth are similar to what many preemies endure at this and younger gestational ages.

As a parent to preterm twins who are now 22 and who were 25ish weeks, and both disabled - one very, very severely disabled and medically fragile, I often hear people say . .well, if they had been born NOW, with TODAY's technology, things would have been far different!

Really, has neonatology somehow, miraculously in these past 22 years found a cure for intraventricular hemorrhaging and hypoxia? Certainly not. Instead, neonatology has moved toward saving younger gestational infants than my daughters whose chances of having IVH's and hypoxia, etc etc are dramatically increased! As we are seeing - the flood of children who are on vents, g-tubes, in wheelchairs has increased dramatically in the past 25 years! So much for outcomes getting better.

Our children born at 25ish weeks or 29 weeks in Helen's case, are similar to technology's saving of 23 weekers today. . only there are more being saved, and as we are seeing from this blog and other parent sites, the outcomes are not improving.

23wktwinsmommy said...

Helen,
I wasn't trying to say that your son's disabilities aren't valid, nor even arguing that they are unlike some disabilities that we see in 23 weekers.
But you did explain why you were so "put off" by Sarah's *personal* distress over the viability debate. All I can say is that's her personal feeling about viability, and you're entitled to yours.
As I've said before...sometimes were you stand depends on where you sit.
But you bring us back to an important point. You tightly wind disabilities with physical pain and lifelong surgeries, my guess is becuase this is your experience with Ed. And please correct me if I'm wrong, (and I'm not 100% sure on this), but from what you have shared a lot of Ed's physical pain comes from repeated shunt surgeries? You talk about his physical pain and him viewing it as torture. His experience is linked to his dx, dxes that are not shared by all preemies. In other words, you keep bringing up physical pain which is very understandably why you feel the way you do. Is it fair to say that others who do not have repeated surgeries might feel differently? That this physical agony you reference may not be universal? Is this why we see differences in outlooks on life from adult preemies and their families?

23wktwinsmommy said...

To Helen who writes:
Sarah is almost certainly talking primarily, if not exclusively, about neonatal pain. But the agony, all too often, only begins in the NICU.

I would highly doubt that Sarah is limiting physical pain to NICU treatment...you can't pull out her entire belief system and experience from one statement. I am sure she knows adult preemies who are still suffering and in pain.

Additionally, I *personally* found her words insighful and appropriate to how I *personally* feel about the disabled and viability..and of course it doesn't encompass EVERYTHING, not for me and not for her either I'm sure. I never meant for her words to be debated here. I am in no place to speak for her. And since she is not here defending her words against your opposition Helen, then perhaps you stop talking about what you think she means.

The Preemie Experiment said...

I will no longer allow any comments that relate to Sarah. None. From either point of view.

As I stated before, I care very deeply about Sarah and am protective of her name. Since she is not here telling her side, I refuse to allow the conversation to continue. I will delete any more that come through.

Her views are just that, hers. She is speaking of her life and deep emotions that come with it. I respect her views, even though they differ from mine at times.

If anyone would like to read her writings, they can find the link on the side bar of the main page of my blog.

If you would like to refer to former preemies, than simply use those words, "former preemies".

I have met many adult former preemies over the years. Their views vary greatly and can be found on both sides of the debate.

But, their voice is important to me. It is my way of understanding Paige. Some are struggling more than others. Some have found a way of using their struggles to help others. Some have chosen to end their lives and some are living their life without ever having to think about their early birth. All sides of the spectrum.

I am reduced to tears when I think about how much some adult preemies struggle to understand their bodies and their minds. They did not have the benefit of parents who could search for help on line. They are doing this on their own now. Even as I type this I type this I am sobbing. I'll never forget those who have helped me with Paige, even the ones who I can no longer thank because they have taken their lives.

So, from now on... we can talk about former preemies in general and that is it.

Anonymous said...

I think a discussion of PAIN that begins in the NICU, and continues in one form or another throughout an ex-preemie's life is worthy of discussion. Thanks for bringing it up, 23-wks-twins-mommy and Helen.

First, there is the brutality of resuscitation . . . especially if chest compressions are required. Intubation is done without pain medication . . . at the time of resusciation and ever afterwards.
(How many times was your child re-intubated?)

We might well ask ourselves, individually, were we aware of our child's pain in the NICU and how that pain was handled? Did we discuss these things with our neonatologists and with the bedside nurses at the time of the care conferences? Were we asked at the time of discharge, in a parent satisfaction survey (de rigeur these days), if we were satisfied with how our child's pain was addressed? When we visited our children in the NICU, were we able to tell if they were in pain/how much pain they were in? Pain cues from them? Did the bedside nurse help you read your child's cues?

Are there behaviors in the aftermath (where your child is hyper- or hypo-sensitive to pain, for example) that lead you to believe that your child was traumatized by pain very early on?
Or is your child VERY fearful of medical people and procedures? Even to the point of panic?

There is also psychological pain, which we only guess at, I think:
Small children who suffer post-traumatic stress disorder with unique symptoms that may be very different from an adult who has PTSD.

We have had discussions before, in this and in other forums, that made my blood run cold, about doing surgery without pain medication. It used to be done this way routinely in the NICU. Addressing the neonate's pain is a recent development. We used to think they did not feel pain (because they did not specifically remember it?). Horrors.

There is pain and panic re: being on a vent. Many adults get paralytic meds to keep them from fighting the vent in their panic that they cannot breathe according to their own needs/rhythm/internal feedback. Air hunger. Not so with preemies on vents. Some kids who are symptomatic of pain or panic get pain meds. Many do not.

There are many painful procedures. Many IV starts, line placement, heel sticks. The CPAD prongs drive many kids nuts. Is the child's pain
acknowledged/respected/addressed?

Nearly every preemie has feeding issues in the NICU and afterwards. Reflux (GERD)causes stomach acid to reflux up into the esophagus. How sympathetic are we about this kind of pain? Do we address it?

There are surgeries--Ed's shunt revisions is one example. PDA ligation is another common surgery. Laser surgery for ROP is another. Is pain and post-surgical pain adequately addressed? How do we know for sure?

There are follow-up surgeries: shunt revisions for post-hemorrhagic hydrocephalus. Ed and my son have had these. The original cause (for my son) was a Grade III-IV brain bleed in the NICU. My son had 8 such surgeries in his first year of life, the first 2 when he was 2 lb, in the NICU. Both my son, Vic, and Ed cannot calm themselves with rational explanations. They cannot express their needs, even to ask for the doctor to wait till the medicine takes effect . . . They lack the insight and the cognitive ability. They will probably never be able to advocate for themselves with respect to medical care. That alone is a whole heck-of-a-lot of pain. Their lack of understanding about why the doctor is hurting them, and their uncontrolled panic cannot be addressed in the same way that you can talk yourself or your neurotypical child through a painful procedure (or prepare for it).

Just now, my son is having a lot of dental issues--due to his extremely narrow preemie-head (toaster-head), crowded jaw and high-arched palate. He has had an awful tooth extraction and much trouble with braces over the past few months. Just now, he has two severe canker sores.

At Tae Kwon Do, Vic WILL NOT stretch his legs during the warm-up. He has CP and his hips, legs, especially the left, are tight and it hurts a lot to try to stretch. He is not malingering--this hurts more than it would for you and me.

Paige complains of leg pain a lot, too. To add insult to injury, Paige's pain has been discounted by the medical people who are supposed to be in her corner.

Some children's mental health sequellae cause them to do self-injurious activities. So there is another whole kind of pain. (Vic trembles and bites his wrist when he is upset, especially if he hears a noise that must be exquisitely painful, given his noise hyper-sensitivity.)

We are lacking in basic compassion if we say "To hell with the pain--my child is ALIVE--that is all that matters." Just as we can't afford to say "To hell with the morbidities--my child is ALIVE--that is all that matters." IMO.

Chris and Vic

Kristie McNealy said...

Wow, Chris, you just made me relive quite a bit of our NICU stay in just a few moments. I happened to walk into the NICU when Cam was being re-intubated. They gave her something, but clearly not enough. She was only 24 hours old, and she bucked like mad when the intern tried to insert the laryngoscope. They tried multiple times to insert a PICC line, which caused her a lot of obvious pain. I even got to be the one to hold her down when the fellow tried one last time. Since I was there, they asked me if I wanted them to give her some versed. I said yes, but I was kind of made to feel like a wimp over the whole thing. Thankfully for me, I missed them doing the cut down to insert her line by a few minutes. I don't even want to know what that was like.

Now, Camden is 28 months old (26 adj) and she is hypersensitive to pain and noise. She also bites herself when she gets upset. She doesn't usually cuddle, and she only kisses. Hugs make her panic because she doesn't like to feel restrained.

Until very recently (when her baby brother started being the patient instead of her), she screamed like a maniac as soon as she saw a stethoscope around someone's neck. She had general anesthesia for a CT and bronchoscopy about a year ago, and although I warned them about her fear of people in scrubs, they tried for an HOUR to calm her down without me present before taking me to the recovery room.

When I used to warn docs, nurses, etc about her fear of people in white coats or scrubs, and most of all how she would panic about stethoscopes, they would laugh... This isn't funny. It's VERY real. Other parents used to recommend letting her play with one of those toy doctor sets. I see how that might help average kids, but her fears are different than the average child's. They come from a place she can't even "remember"!

-Kristie

23wktwinsmommy said...

Stacy, just so you know that is why I referred to Sarah as an adult former preemie and never brought up her name, until after it was brought up by you. But thank you for addressing that and putting an end to it.

As for pain, my children were most certainly in pain and their pain was addressed, how well I cannot be sure. The oscialltor was particularly painful and my son was on paralytic meds as well as pain control. They were given pain meds after their PDA and ROP surgeries as well.
It is devastating to think about pain, to me especially pain that children with medical needs have to face. This includes millions of children with medical needs, it is not only a "preemie issue." You say we shouldn't say "To hell with the pain--my child is ALIVE--that is all that matters" and to some degree I agree with you. We are not igoring or refusing to acknowledge pain just because we consented to the medical procedures that enabled life but was the cause of pain. Chemotherapy is an extremely painful course of treatment but is administered to children. There are children born full term with CP who have painful contractures and need life-long therapy. Children can develop menegitis and this can lead to brain swelling, the need for a shunt, and other painful side effects. There is extreme pain that is experienced by children and adults with medical issues every single day, and what must be done is acknowledge this pain and treat it the best way we can. This goes for neonates, infants, children, and adults.

You say, "we can't afford to say "To hell with the morbidities--my child is ALIVE--that is all that matters." I'm not suggesting that in the least. Of course it matters what former preemies are dealing with. No one is saying that all that matters is their child is alive...at least I've never heard that. It MATTERS a lot how our children are doing and I think that's why many of us choose to share that information.
A major difference is some parents have children who experience pain on a very regular basis, others do not live this reality. Does it mean one experience holds more weight than another? I don't think so. Do we stop treating the medically fragile/needy because treatment will be painful and/or pain will continue throughout life because of the condition? In my opinion that's not the answer. I do believe in choice. I do believe in ending treatment, and I believe this choice most definitely needs to be offered to parents in NICU, and that parents need to explore this choice if they feel their child's treatment is futile or unjust.

23wktwinsmommy said...

And just to add, our son's pain was a major reason we made the decision to end care (I've shared the story before of how that decision never played out). One night we stood by his bedside and his tiny face was clearly "crying out" in pain. I was crying and looked at dh. "He's in pain isn't he?" were my exact words. His nurse sadly nodded, "yes." I said, "that's enough. I can't allow this anymore." I felt he was suffering and nothing was coming of it...he wasn't getting better...he wasn't coming off the vent.
So yes, I do hear understand NICU pain. Please never think I am trying to say there is no pain. There is pain and it is not all relieved by pain meds in the NICU. So I certainly understand the decision to end the pain, and even that being a major reason why never to allow the pain in the first place (not resuscitating.) I certainly was not aware of how painful it would be until I saw it firsthand and learned their cues. But I am just saying, I don't think the answer is to 100% stop treating medically needy people because of pain. But in the NICU you certainly have to gage the risks/benefits for your own individual child/ren.

Anonymous said...

Helen Harrison says:

To summarize just a few of the findings of current neonatal research:
exposure to neonatal pain/surgery permanently impairs the neurologic systems that allow us to cope properly with pain in later life;
the effects of neonatal pain persist into adolescence (and probably beyond);
surgical ligation of the patent ductus arteriosus has an adverse impact on neurodevelopmental outcome at adjusted age 3 and impacts future reactions to pain and surgery;
cumulative neonatal pain-related stress -- the number of skin breaking procedures and the days on mechanical ventilation -- in very preterm infants predicts poorer cognitive and motor outcomes by age 18 months; however, morphine used to block the pain may contribute to future motor problems (cp).

So we have a situation shaping up in which *both* the severe and relentless pain of treatment *and* the drugs used to help alleviate that pain cause brain damage in and of themselves.

More to come...

Helen

Anonymous said...

Helen Harrison to 23 weeks' twins mommy who said:

"But I am just saying, I don't think the answer is to 100% stop treating medically needy people because of pain"

***

No one have ever suggested 100% stop treating anyone! All that we are discussing here is informed choice of the patient or the patient's surrogate (parents in the case of preemies).

Information on outcomes and options (whether it is construed as distressing or hurtful by some) needs to be out there and needs to be discussed, especially on this blog.

Helen

momtolilikelockeanjeni said...

I remember seeing my full term daugter Lilike of 39 weeks scream all red faced and thrashing when they were trying to find a vein in her chubby little arms at 5days old to start a new iv for more antibiotics after her 1st bath at 5 days. Or the crys she made having heel sticks each day for the 1st 7 days of her life. It was tough but Im glad its over

Anonymous said...

I have read here often and I swear everytime I will not come back yet here I am and maybe what I have to say may help some, and others it may not.

I was born at 27 weeks in 1963 and not expected to survive at all but I did. I was a fighter and I still have a strong sense of fight in me now. I am a mother of a daughter born at 29 weeks. I am a grandmother of a little girl born at 25 1/2 weeks.

I am successful in my life and am very thankful to the doctors who thought that I was worth saving, if not I would not be a mother and grandmother. I was in the hospital for the first 6 months of my life and have absolutely no memory of any of it. I dont have any out of the ordinary effects from pain different than any other person. If you met me you would never know I was a preemie that people thought would not survive

I am as normal as you are, so is my daughter and so is my grand daughter. I do not have any health issues related to my early birth and have lived a happy normal life. I do believe that every life deserves a chance. I cant even begin to imagine this world had I not been here, nor what the world would miss without my daughter and grand daughter.

If resucitation of preemies is wrong why not just let all the less than perfect babies die, irregardless what gestation they are? Seriously, why not the ones with deformities, heart abnormalities or any other thing that makes them less than perfect.

I believe in life and I am so glad to have mine, and that someone thought I was worth a chance.

Then again this is just the opinion of an adult 44 year old preemie. A mother and grandmother. A daughter, a sister, a mother, a aunt, a grand mother. I am all those things but if I had not had a kind doctor that saved me I would be none of those things.

Kellars Mommy said...

Anon 12:01

Thank you very much for sharing!!!

The Preemie Experiment said...

Dear Anonymous,

For you, your daughter and your granddaughter, all born before 30 weeks, to be "normal" is amazing. I hope that you all are enrolled in some sort of follow up so your story could be duplicated.

Sadly, your outcomes are not the norm, by far.

Thanks for sharing.

Stacy