Monday, January 8, 2007

The definition of "experiment"...

According to www.dictionary.com the definition of experiment is as follows...


1.
a test, trial, or tentative procedure; an act or operation for the purpose of discovering something unknown or of testing a principle, supposition, etc.: a chemical experiment; a teaching experiment; an experiment in living.
2.
the conducting of such operations; experimentation: a product that is the result of long experiment.

So, why name my blog "the preemie experiment"?

Let me start at the beginning.

The day my water breaks, with my first pregnancy, I was 23.0 weeks pregnant. The experiment begins as soon as I am admitted. I was told that I would go into labor within 24 hours. When that didn't happen a neonatologist came into my room to tell my husband and I that our daughter will never be normal if she is born before 26 weeks and that she would most definitely have disabilities. He told us that we should just hold her and let her die in our arms. He was even willing to make sure our wishes would be carried out in the delivery room.

How could a doctor be so cruel? How could he stand in front of us and tell us to let our child die? One very simple explanation... he had seen other preemie experiments and the outcomes were not good.

I didn't appreciate his knowledge at the time.

When we refused to give up, I was moved to another hospital with a NICU that was able to care for micropreemies. Before being transferred I was shot up with steroids to help her lungs mature (another part to the experiment). At the new hospital I had daily tests and throughout the next 2 1/2 weeks I had more steroid injections. (ah... the experiment continues... In case you aren't aware... there is no proof that more than one course of steroids is more effective but being that I was now willing participant of the experiment-they can do what they want)

The experiment received their next participant the day our daughter was born-at 25.5 weeks, weighing in at 1 pound 12 ounces and 13 inches long. Post natal steroids for her-not being sure on the dosage-they just guess (based on past participants). So many tests for her lead to many blood transfusions. X-rays, ultrasounds, exams... all part of the experiment. Central lines, TPN, IV's-all without any pain meds. Is this humane? Alarms blare, phones ring, people talk loudly around the babies. All part of the experiment.

78 days later-daughter is discharged and we are told, "she's a fighter, she'll be fine." The experiment continues for the first year. We attend follow up meetings to check her progress. A success in their eyes which means more willing participants for their experiments.

That was 8 years ago. She walks, she talks, she is advanced in some areas of school. She is beautiful. Hardly an outward sign of her prematurity.

A success?

Not if you ask her. She is in physical pain daily thanks to mild cerebral palsy. Headaches. Seizures. Major sensory issues. Can't write long due to fatigue and pain in her hands. Severe OCD. Pain in her eyes from the scar tissue. Has thoughts of killing her parents and her brother, and even herself. Tics. Chronic constipation. Yellow adult teeth. Reflux that has put holes in her teeth. Years of physical therapy. More tests. Lots of blood tests. Etc... blah, blah, blah.

Our heart aches for our daughter. I don't know what life would be like without her. I just can't bear to think what life will be like *for* her.

There are new participants every day. Even younger ones. 22 and 23 weekers are entering the experiment even as we continue with ours.

34 comments:

your fellow man said...

Thank you for your posting. Your sentiments represent some of the ambiguities that I frequently am forced to confront as a neonatlogist. Are we doing the right thing? I am never going to have an absolute answer to that question, and I just have to accept that. I've heard before that all we can really do is approach every unique situation with empathy and compassion, and just do the best we can. I do know that life will never be easy, but it seems like it's the hard things that ultimately make the good things so satisfying.

WELCOME TO THE BLOGOSPHERE! I'll add a link to your site on mine.

Ann said...

Well written post and I am sorry you are dealing with so much and that your daughter is in pain.

I *think* what you are arguing for is informed consent. I hope you are not arguing for a blanket guideline in terms of weeks of gestation for resuscitation. My son happens to be a 28 weeker. I received my steroids (2 injections of betamethasone) about 13 days before his delivery. I am shocked to hear you weren't given a choice or the stats. I was presented with stats from my peri on one vs. 2 or more rounds of steroids. I wouldn't have had the chance to do a second as my son arrived 13 days later, but we had decided not to do a second round and my peri was totally on board with my decision.

I was told my neos early on that if "bad" things started happening with my son they would keep me informed so we could make the right decisions for us. Gratefully we were never faced with that. He had no bleeds, no infections...only a vent course. So based on all of the info we were given we chose to proceed. Today our son is 16 months and *so far* ( I realize this could change) he is doing well and exceeding all expectations set by his peds for not only growth but development as well.

I realize that a 28 weeker is not really in the same ethical boat and a 25 weeker.

I appreciate your perspective and the fight for the right to informed consent. I just hope what isn't happening is the idea that *all* preemies are a problem to get rid of.

Thanks for your thoughts.

Ann

terri w/2 said...

In 4 days, my former 25 weeker, grade IV bilateral IVH, now 21 year-old twin is having yet another orthopaedic surgery - this time to have a rod implanted in her back, the length of her spine to keep her upright and prevent further scoliosis. As this day nears, my anxiety once again heightens, wondering if this will be yet another failed medical procedure (she's had numerous) where the expectation is greatly below reality. . will her suffering (again) be ultimately worth it?

One thing that came up recently that was extremely interesting - there was another blog discussing
the surgery performed on the girl to keep her small stature so her parents and others could more
easily care for her. .another ethical quandry, but one which from being in their shoes, I vehemently support. .and from visiting these parents' website, I see that there is tremendous support from other parents who are in their shoes as well. .

Anyway the blog I stumbled across kept going and going on different threads and turned to euthanasia, suffering, torture - and someone said that his mother, who had been alive during WWII told him once that she would have killed him and his siblings before allowing
them to be taken to a concentration camp where they were certain to be tortured. At first he said he was shocked by his mother's statement, but then realized that killing him/siblings would have been the lesser of two evils, and done with such courage because of her love for them and wanting to protect them from torture.

So my thoughts have been wrapping themselves around this recently. .is torture done with good intent (what our micro preemies go through under the term medical "care") better than torture done with bad intent, or, is torture just plain torture? If you look at it from the standpoint of a fetal/infant, or as my daughter who not only has severe CP, but also profound MR, who has no idea of what's ahead of her in 4 days, and who does not understand why they/she hurts, I believe from her/their standpoint, torture is torture whether the intent is good or bad.

As the limits of viability get pushed, why is it that the suffering of these infants - whether it be in the NICU or for a lifetime so easily dismissed?

Helen Harrison said...

Congratulations on an awesome blog!

We are also on the "medical merry-go round" with Edward our 31-year-old 29-week preemie.

He is showing signs of intermittent shunt malfunction and we're commuting back and forth to UC Med Center for testing. There's also some sort of enlargement on his hypothalamus which no one can explain.

None of this is quite so awful as the issues Terri w/2 describes, but it could quickly become so.

The last time Ed had shunt surgery, the surgeons told us that he had so much scar tissue in his abdomen (from other shunt surgery), as well as in his ventricles, that they didn't know where or how another shunt could be installed.

However, 31 years ago another doc dismissed Ed's first shunt operation in the NICU as the solution to an easy-to-fix "plumbing problem."

At last year's Society for Pediatric Research I heard neonatologists express amazement at the horrendous outcomes described in a study (conducted by parents!) on the functional outcomes of their adult children with hydrocephalus. I was amazed -- and shocked -- that the neos were amazed.

Congratulations one and all for helping bring this discussion out in the open.

Helen Harrison said...

I think The Preemie Experiment blog would be an excellent place to post the "preemie syndrome" information being generated by the parents on "Preemie-Child."

The preemie-child list is not open to parents whose children are younger than four (too many new parents become upset by infomation of what may lie ahead) and doctors are usually not allowed on the list either.

The Preemie Experiment blog could help serve as an interface between these "separate" worlds.

terri w/2 said...

That is an awesome idea, Helen.

It's interesting that with the surgery on Tuesday looming over us, I'm having NICU flashbacks like crazy, my anxiety and anger are beginning to escalate - post-traumatic stress rearing its ugly head, perhaps?

One of the interesting things that I thought about today. .the last time we were in for a surgery, about 2.5 years back, we met a pain management doc who used to be a perinatologist. I asked him why he left - he hesitated, probably not wanting to get into it with a mere parent. However, over the course of the next day or so, he began to open up to me - he was the father of preemie twins, one of whom survived with Aspergers - you know, one of the pesky "preemie syndrome" problems we seem to hear quite a lot of - or as one doc said recently on a different blog "a school performance problem". .anyway, this pain team doc apparently saw the light once he himself had been in a parent's shoes, and he was bothered enough to skedaddle himself out of high risk OB/neonatal care.

Good job on this new blog - will be interesting I'm certain!

Helen Harrison said...

Here are the preemie syndrome symptoms I used in a 2005 presentation to the
National Perinatal Association.

These are the traits that don't show up in premature follow-up studies, but alone or in combination, and they usually exist in combination, these traits may prevent future independent living.

Social Dysfunction: few, or no friends; oblivious to social cues; oblivious
to social space; low self-esteem

Behavioral Problems: general immaturities; poor impulse control; stereotypic
or self-injurious behaviors; intense need for order and routine; sleep
disorders

Extreme Sensitivities: strong startle reactions; hypersensitivity to sound;
extreme aversions to certain tastes and textures; "tactile defensiveness"

Cognitive Problems: difficulty thinking logically or to dealing with
abstraction; literal-mindedness; May be good at rote learning; test scores may be higher
than actual functioning;

Also "savant" traits that co-exist with low IQ; inability to comprehend or follow simple directions; generally disorganized

Abnormal Reactions to Pain and Danger: may not respond to pain of illness
or injury, but may also still have a deep fear of medical procedures; may fail
to recognize (or actually seek out) life-threatening experiences; peculiar
phobias

I only included behavioral/cognitive issues above. Many will recognize them as compatible with autism disorders. Elsewhere I have also
mentioned the physical and medical problems that continue to afflict our children:

significant motor problems not
diagnosed as cerebral palsy

intractable feeding
disorders; failure to thrive

digestive problems, such as severe reflux, intractable constipation, bowel adhesions from NICU surgery,gall bladder disease, need for g-tube feeding arising in late infancy or beyond

kidney stones

bedwetting

osteopenia (rickets)

precocious puberty

ongoing lung problems; severe asthma

visual problems from ROP that deteriorate leading to later blindness

metabolic syndrome (high blood pressure, diabetes, high BMI)

unusually copious sweating (metabolic? neurologic?)

cortical blindness

OCD

Depression; bipolar

Delusional thinking; schizophrenia

Perseveration

Seizure disorders arising in adolescence or early adulthood

to be continued, and refined...

Gaelle said...

Mon fils né à 25 semaines il y a 16 ans présente lui aussi plusieurs séquelles de sa prématurité. Il y a quelques années, une néonatalogiste m'a dit que le fait qu'il puisse marcher, voir et parler faisait de lui un enfant normal... Elle a alors refusé de remplir le formulaire gouvernemental qui me permettait de faire reconnaître les handicaps de mon fils... Un autre médecin a, lui, accepté immédiatement de remplir le formulaire! Erwan a la paralysie cérébrale, il a dû subir jusqu'à présent 2 chirurgies orthopédiques. Il a une surdité sévère, une déficience intellectuelle légère (il est actuellement en 3ième année du primaire), il a un reflux gastroeosophagien sévère, une constipation sévère, des troubles du sommeil, des convulsions s'il a de la fièvre, etc... Il ne vivra évidemment jamais de façon autonome!!! Que faut-il de plus pour qu'un néonatalogiste daigne reconnaître qu'un prématuré a des séquelles et est handicapé?
La reconnaissance des séquelles de ces enfants pourrait inciter les directions d'hôpitaux à revoir à la baisse le montant d'argent investi en néonatalogie au Canada? Je le crois! Mon fils a fait partie d'une étude sur les enfants nés à 28 semaines et moins, comment expliquer que dans l'article paru aucun enfant n'était atteint de surdité en plus d'une paralysie cérébrale? Un oubli? Un acte malintentionné?
Gaëlle.

Helen Harrison said...

I'll do my best to translate the message from Gaelle and get the translation to you ASAP. (My French is "assez mediocre," alas)

Anonymous said...

"The preemie-child list is not open to parents whose children are younger than four (too many new parents become upset by infomation of what may lie ahead) and doctors are usually not allowed on the list either."


I think plenty of us on the list and ones also on preemie-l are finding your postings on all of these blogs. It is a little disheartening to see you writing the book on all of the preemies who have yet to reveal what kind of a life they will have. I certainly hope you don't intend to cause insomnia and perhaps unneeded worry and heartache by taking this discussion over to preemie-l. Not all preemies end up with these problems. Oh, and lots of non preemies end up with them anyway.

Helen Harrison said...

Here as best I can render it is Gaelle's post:


My son, born at 25 weeks gestation is now 16 years old and has several sequelae of his prematurity. Several years ago, a neonatologist told me that because he could walk, see, and talk he was a normal child. She refused to fill out a form attesting to my son's handicaps. [However] another doctor immediately agreed to fill out the form!

Erwan has cerebral palsy, and has to date undergone 2 orthopedic surgeries. He has severe hearing loss, is mildly retarded (he is now in the 3rd grade), he has severe gastro-esophageal reflux, severe constipation, sleep disorders, and febrile seizures, etc... He will obviously never live independently!!! What more do we need to make neonatologists recognize that prematurity has consequences and is handicapping?

Could the [honest] follow-up of these children's sequelae cause the directors of hospitals to rethink the increasing funds invested in neonatology in Canada? I believe it would. My son was part of a study on infants born at 28 weeks and less. How do [the follow-up researchers] explain that when their article appeared, no child in the study was said to be deaf and have cerebral palsy? Was this an oversight? Or was it something less innocent?

Helen Harrison said...

To "anonymous":

No one is forcing you to read these posts. If they disturb you, please do not read further.

We want to keep the lines of honest communication open, however, to consenting adults.

Thanks!

Helen

Anonymous said...

I think what I am becoming upset about is your assumption that all preemies are going to have huge problems. Have you stopped to consider the fact that your Narof group of Yahoo or the preemie child group consists largely of families of preemies WITH problems? Perhaps the families of preemies without do not feel the need to be on such lists. I found these blogs because some people on preemie-l found neonatal doc's blog. I have now read a few of the views you and some of the other parents on Narof have of the parents on preemie-l. I believe the some of us were described as "naive" and "clueless". Talk about the ultimate insult. Just because we do not automatically resign ourselves to our child having a terrible life does not mean we are naive or clueless. Have you considered that perhaps we are informed but hopeful?

It is just sad to see a group of people feel so superior to the rest of us.

Helen Harrison said...

To "anonymous:"

Go ahead and be hopeful. I think that is good.

Just don't try to "shout down" discussions by others who have learned the limits of hope.

If your child is doing well, be grateful.

I have to wonder, however, why you are reading this blog.

Anonymous said...

Helen:

I am reading this blog because I have long admired your work and the neonatal doc conversation got me very interested. I did begin to find a very negative tone in much of what you were writing. I believe in informed consent and would have chosen comfort care only for my child if born at 24 weeks but I was fortunate to make it just beyond 28. He is doing very well and I just try to keep myself informed of what may lie ahead. I have every reason to be hopeful for him at this point and realize there is the other side to the stats you present. The 60% that live independent lives like the rest of us.

I do not wish to silence your voice, just for you to understand that it isn't a one sided picture of doom and gloom.

Thanks for your thoughts and your continued advocacy for preemies.

Helen Harrison said...

To Anonymous:

I am giving the outcomes as they are revealed by the neonatal profession itself. I do *not* make this stuff up. As for the preemie syndrome, it comes, as you know, from your fellow members of preemie-child. I don't think they are making it up either.

75% of preemies are coming out of the NICU with significant brain damage -- this is, sadly, a fact. But... it means 25% don't have this degree of damage.

Every statistic (from the medical profession) that I quote leaves a percentage for "not impaired by our definition."

This is *not* total gloom and doom. If your child is doing well, rejoice!

By the way, sould you explain what you mean when you say I am bringing this discussion to preemie-list? Can you offer a specific example?

Finally, I don't know the coast on which you reside, but it is close to bedtime almost everywhere but Hawaii. Try to get some sleep, and I sincerely hope you feel better in the morning.

Helen

Anonymous said...

Never did I imply that you make it up. I was simply pointing out that there is the other side to the stats. Additionally, brain differences do not necessarily translate to severe problems.

I do rejoice because my child is doing well. I am VERY blessed. I know that all is not roses with a preemie, but I also know that I would much rather have him here than not.

As to the reference to preemie-l...this thread was discussed by a few of us off list.

http://groups.yahoo.com/group/preemie-list/message/128673

You are most definitely delving into these subjects on the board. I am not particularly upset but have a few friends who were.

I am on the west coast and it is indeed time for bed. By the way, I had a GREAT day. My son climbed into my lap and asked me to read him a story and clapped when it was over. Not a bad end to a day.

The Preemie Experiment said...

To anonymous,

The reason for my blog, NAROF and the postings on neonataldoc (and others) is because neo's have the right to know the real statistics of *older* preemies. These docs are not on the preemie groups. They only see the beginning of the life of a preemie. They have the right to know what happens years after the NICU. How can they properly counsel the parents of their potential patients if they bury their head in the sand and assume that all preemies will "catch up by age 2"?

Would you want to be counseled by any doctor (oncologist, gastroenterologist, neurologist, etc) who never read the statistics or took the time to research long term outcomes of their profession?

I do believe that all new preemie parents should have hope. It is hope that drives us to get all of the medical help we need for our baby. If we didn't have hope, we may give up in the beginning.

But, as my preemie got older, that hope turned into a calling. A calling to make sure the world stopped telling parents and the unsuspecting public that preemies are just small babies and that they will catch up by age 2.

If it wasn't for parents speaking up on the realities of prematurity, you would not have the services you had for your preemie. Thanks to parents of preemies, sensory integration dysfunction has been put on the map. The school system is just now beginning to listen. The list can go on and on.

I don't even want to think about what life would be like for MY preemie if Helen and many others were not so outspoken on the effects of prematurity.

So, I agree with Helen. If it is too difficult, at this time, to read our posts, please don't. Every one of us understands where you are coming from.

But, under no circumstance will I stop reporting reality.

Joan said...

I am writing partly in response to the words of "anonymous" and her statement the "assumption that preemies are going to have huge problems" in response to Helen's words. As an advocate, Helen has consistently reported facts and the results of numerous medical research studies. She has never reported any "assumptions" that I am aware of. She is, in fact, a stickler, for medically documented research which, compiled, is overwhelming in its scope. At the same time, this research and information is relatively unknown by the general public.

Also regarding the comment about "a group of people who feel so superior to the rest of us". I don't read "superior" in the words of any person on narof - more like much wiser, through experience, than anyone would like to be.

Someone recently reported the members on the preemie-child list - was it 250? I could be remembering the number wrong. 250, or even 1000, is a minute drop in the bucket compared to how many preemies are out there. How many parents are struggling with issues that are not defined or "do not exist", and are therefore not helped or remediated. My son was 9 when I found preemie-child. I cried when I found information on all the things that I had struggled with over the years - things our MD's were apparently oblivious of, and our school district who, if they were aware, had a financial interest in not letting me know about.

There are numerous families also struggling in the dark with "minor issues" that impact them in HUGE ways. The stressors on these families are huge. Children break down, marriages break down, families break down. Our schools are being flooded with these children and our school districts do not have the financial resources to effectively, and fairly, remediate these issues.

Insurance companies are paying hundreds of thousands, even millions, on the birth of a single preemie. Parents fight tooth and nail, if they have any energy left with all the other demands for living, to attempt to get help for their children. There are many closed doors that parents face due to lack of funding for the help their child needs.

Neonatology is producing miracle babies - saved as early as 22 weeks. Yet medicine, as a whole, has not yet found a way to treat outcomes of the brain damage that is occurring in 75 percent of these babies - the brain damage that research is showing to be correlated with autism, mental illness and schizophrenia and cerebral palsy.

Helen Harrison said...

Here is an excerpt from an article I wrote (published in 2001 in the Journal of Clinical Ethics) that I think is relevant to current discussion and upheavals on the blog(s).


Making Lemonade: A Parent's View of the Quality of Life Studies
by Helen Harrison

***
"It is a mistake to confuse coping mechanisms with quality of life."
—Carolyn Daniels,Ph.D.,. social worker, McMaster University Hospital, 1985-1995
***

COMFORTING LIES

Upon becoming parents of a disabled or “high-risk” child, one of the first things we learn to do is lie—to our friends and family, to the doctors, to our child, and to ourselves. We quickly learn that others do not want an honest answer when they ask, “How are you (or your child) doing?” and we oblige by giving the positive and politically correct answer.

“When I mention Andy’s condition,” writes Jennifer Hamilton, mother of a retarded child, “I can almost count on the response: ‘But he’s happy, isn’t he?’ It isn’t merely a conventionally polite question; I sense real anxiety behind it. The ‘dumb but happy’ notion is one way of avoiding confrontation with painful and complex realities. But it is not really the questions people ask that disturb me as much as it is my reaction to them. Because I am aware of others’ need for reassurance I find myself offering them the comforting lie, ‘Oh, he’s just as happy as can be.’ Then I smile confidently and change the subject.”

We don’t lie just to reassure others. An arguably more important motive is the need to comfort ourselves and give positive meaning to the immense physical and emotional difficulties of our lives. We refer to our children as “miracle babies.” We want to believe that we have become “better” and “braver” through participating in their medical ordeals and developmental struggles. We are “special parents” to “special children.”

We lie to deny, or at least postpone, unpleasant realities. We believe that our children’s problems can be overcome with therapies, interventions, and, of course, the “right” parental attitude. If we play our role with bravery, all might end happily. Our children’s doctors and therapists instruct us in euphemisms: our children do not have cerebral palsy or autism, they have “tight muscles” or problems with “sensory integration.” Our children are not retarded, but “developmentally delayed.”

Disability rights advocates caution us against using phrases that begin with the words “suffering from,” even when our children’s conditions involve substantial pain. We learn to keep a straight face when we describe our children as “handi-capable,” “not typically developing,” or “severely differently-abled.”

But, in private, we still feel guilty and ashamed. Our bodies or our genes have somehow malfunctioned and, as a result, our child and family must now cope with painful consequences. In public, we cringe as strangers try to stare past our child’s odd behavior, strange appearance, or bizarre and complex medical equipment. We suspect they are thinking: “What did that mother do wrong?” “How much of our tax money goes to support these children?” and “I sure am glad that isn’t my child!” We feel an urgent need to defend ourselves against our harsh inner judgments and those we suspect others make about us.

Helen Featherstone, mother of a child with severe disabilities, writes that most parents of handicapped children “resist any interpretation of their lives that would convert them into objects of public pity. Like the disabled themselves, they are, they keep insisting, ‘leading a life.’ ” We assume our bravest face to tell the strangers in the supermarket or the doctor’s office (the ones who dare to ask) that we and our child are doing just fine, thank you! “I have known mothers so conditioned to being brave,” writes Hamilton, “that they have practically convinced themselves that their child’s disability is a blessing.” Some of us, wishing to extend these blessings to other families, support “Baby Doe” legislation.

We try to raise the self-esteem of those of our children who are able to understand the concept, by reminding them of their heroic fight for life and by encouraging them to accept and embrace their “challenges” with pride. The guilt we feel for being the agent of the damaging conditions of their births—and the guilt our children feel toward us for being the cause of pain and upheaval in our lives—adds poignancy to these efforts. One mother of my acquaintance told of repeatedly trying to convince her daughter to be proud of having been a miracle baby. But when the child was given a school assignment to write about the one thing about herself she would change if she could, she wrote a bitter essay about her premature birth.

Nevertheless, the familial and societal pressures on our children to think positively are strong. Prematurely born teenagers and young adults have told me of their need to appear brave to protect their parents from further pain. They also worry that if they openly express grief or discuss their frustration and pain, it will be viewed as an act of disloyalty by others in the disability community, a culture that “celebrates disability” and scorns the notion that handicapping conditions might cause problems beyond those imposed by social prejudice. Eventually most children with disabilities, like their parents, learn to put on a brave public face.

There are, of course, a few parents and children who insist on revealing the uncomfortable private truths of their lives, but they do so at their peril. “In this relentlessly upbeat culture,” writes Featherstone, “it takes courage to confess to personal despair.” One young man featured in a documentary on retinopathy in premature infants discussed the difficulties he had personally experienced from his blindness and stated that he would not want a premature baby of his own treated in a neonatal intensive-care unit (NICU). He was severely rebuked for this opinion by other blind adults. Adults who speak with candor about their disabilities have been driven off Internet support lists and ostracized by their peers. Parents who express unhappiness about the conditions of their children’s lives (and their own) may find themselves barred from support groups for “negativity.” Physicians and therapists label such parents as “angry” and “embittered” and refer them for counseling and even for investigation as potential child abusers. Parents who express their despair in public, especially if they question the ethics of aggressive treatment for extremely premature infants, are accused of being “bad parents” and “prejudiced against the handicapped.” Some mothers and fathers have told me that for speaking out they have had their jobs, and even their physical safety, threatened. It is clearly dangerous to challenge other people’s coping mechanisms.

Parents often tell me that they are afraid to speak out in public lest their sentiments be misinterpreted. They fear accusations that they do not love their child, accusations that would only cause their child and family further pain. “The only parents who can speak candidly,” a NICU nurse and mother of a preemie told me, “are those whose children are too disabled ever to understand.”

But parents of more severely disabled children have their own set of silencing fears. “We have to beg for every service and every bit of equipment our child gets,” states the mother of a multiply handicapped preemie. “There is no way in the world we could afford this on our own. We are totally dependent on the people at my child’s special school for his care. If we were to speak out about our true feelings, there would almost certainly be reprisals against our son and ourselves.” Other parents hesitate to make public statements because they depend for ongoing treatment on the same hospital and doctors who saved their child’s life, and they fear alienating their child’s medical caregivers.

The comforting lies (or the failure to tell the uncomfortable truth) are not simply emotional coping mechanisms for many of us. They are practical necessities if we want our children to get proper medical and educational services.

But the comforting lies are in constant tension with the facts of our daily lives, and, as we and our children grow older, cracks appear in the cheeriest facades. “Delays” become “disabilities,” and the struggles we had hoped were temporary are finally acknowledged as permanent and irremediable. Disillusionment and burnout take their toll. In a few tragic cases, we snap—as have several Canadian parents recently involved in mercy killings of their severely disabled children, and as did the Kelso parents of Philadelphia who abandoned their disabled, prematurely born child at a local hospital. A New York Times article about the Kelso case quotes Beth Gage, mother of a handicapped 17-year-old son, who comments with unusual candor: “People put up a good front in public, acting like everything’s hunky-dory, but behind closed doors they fall apart. I can’t tell you how many times I’ve felt like quitting.”

Most of us, fortunately, do not act on our despairing secret thoughts. But behind closed doors, after a few too many drinks, or in the darkened parking lot after a support group meeting, the truth comes pouring out. The conversation begins with the obligatory, “I love my child dearly. I am so grateful to the doctors and nurses who saved him, but. . . .”

Kristina in SC said...

If I had only known....
IF the doctors had offered me a choice.. I would not have 'saved' my child. The first thing I did when leaving the hopsital was get books on prematurity because the doctors told me all would be well but looking at my child I knew that NO WAY would a baby so small be ok. I had never seen a preemie while they were small, only the TV preemies.. the good stories. Like most people I thought that they lived OK or died.
The books told a different story and I was very upset that the doctors had 'saved' my 25 weeker.

After 2 1/2 years on the ventilator at home, a g-tube, CP and other issiues, I can say that life for my little girl was torture and we will never be done with the new problems that come up.
(She is having leg surgery 1-16-07)

It took 3 years before any doctor would even label her with CP and delays... we knew my age 1.

Services... ha ha
Can't find any daycare to take her. Doctors are hard to find because she is on Medicaide and they have their fill of Medicaide patients.
She too likes order and can't really think in abstract. We can tell her pain is different from normal but she can't tell us how. Her hands and feet must feel different because of the 83 scars I can count on just 1 hand from getting stuck so much in the NICU (this must dammage nerves).
She is the love of my life... but for me it is she was small to 'save'.

I beleive in informed consent, with true odds.
I do not think there are many true odds given out there. The hospitals and March of Dimes like to clump babies born before 32 weeks together but I think if you had 2 groups (28-32 weeks then 23-27 weeks) you would see some real numbers come out. I do not think there the precent of babies born prematurely has gone up just that doctors are trying to save ever smaller babies. What used to be a still birth is now a baby.

Here there is are 21 weekers... I think 2 of them but how many died to have 2.
For me the NICU doctor sumed it up best. She said to me "We learn from childern like this."
But I never signed up for an experiment. And my child did not sign up to be tortured.
Kristina- mom to the 3 MILLION dollar child.

terri w/2 said...

I too was one of the fortunate parents who found Helen's book (back in '86) when my girls were still in the NICU. I devoured it! It was such validation for what lie ahead. It helped me move out of denial much more quickly knowing that there was a path where others had walked before me. If others could survive this, so could I. Did I grieve for my daughters and their issues - you bet I did, but I also became their biggest advocate and was armed with (finally) accurate information. Information and knowledge is power. Having a well-informed mother she-bear is about the best thing a child with disabilities can have in their corner!

Is it disturbing to hear about our children for those who may be just beginning the journey? I'm sure it's damn scarey. However, that doesn't mean we should go quietly away. To do so would negate all the suffering and struggles our twins, family and others like mine have been through.

Jo said...

I've been navigating this term called disability with my daughter, born at 24.5 weeks, for many years. I follow these debates often, but rarely find the time to post. I do, however, have much time to reflect.....
I think it is important to differentiate and DISENGAGE medicalized notions of quality of life from the social possibilitites for quality of life. What I see happening in this debate, and on other blogs is the polarization of the two....no issue can be so readily ethically reconciled through polarization. Medicalized notions of quality of life do nothing to define the social experience of raising a multiply disabled child. As soon as parents, families, communities, and caregivers can break away from medically comandeered notions of quality of life, quality of life can be reclaimed for our children.
If we continue to willingly accept positive outcome-negative outcome binaries and measure our disabled children against a backdrop of the medical summons to normalacy, we are well on our way to preforming eugenics.

While Helen listed off the medical realities of disability very accurately, her list requires a counterpart from a social perspective of disability.Here are the symptoms I use to reclaim this notion of "quality of life" for my daughter. While medical technologies have heroicly/violently saved and salvaged and rescued her....I seek to rescue her from the social impacts of medical labelling. She is not a "poor outcome". She is not living a fate worse than death. I choose not to project these "outcomes" on her.

I have not present these symptoms to perinatal associations, but live them everyday, and find, unsurprisingly, that everyone in our family is quite fulfilled, successful, happy, thriving..

These symptoms that don't show up in premature follow-up studies, either.....

Some preemies can expect to:

Fail to accept that deficit models of therapy offer any real measure of life experience.

Engage in excessive laughter and basic comprehension that 1. laughter beats therapy on any given day and 2. excessive laughter is the best measure of success in life.

Understand that "normal" is over-rated. Exceptional is far more interesting!

Understand that "Hope" is mis-directed if what we hope for is merely to be normal.

Be emotionally sensitive despite a societal context where emotional expression is typically restrained.

Have the capacity to teach others about social, tolerance, inclusion, difference, helping others, SELF-LESSNESS, sharing.....etc.

Contribute, immeasurably, to social enviroments.

Shatter the myth that everything unfolds according to plan...or that it should....

Experience interdependent living (yes....some people experience great joy from mutually constitutive life experiences. Where Western societies over-value independence and excessive individualism, there are persons among us that tell another story about human interaction....a story about mutually engaged people, co-operation, responsibile communities, supportive conncected families...etc.)

Help foster sensitive, socially responsible siblings.

Have high Self-esteem. Refusing medical ideas and aspirations of "normalcy" improves self-esteem. What can be more damaging to a child to constantly diagnose their quality of life as "poor", their physiology as "deformed", etc....language contributes greatly to how our children understand their world, whatever cognitive function.

Require extreme creativitity, to invent new methods, mediums, and the means to accomplish great things.

Need responsive social and physical environments in their communities.....not neccessarily a bad thing.

Understand that adaptation is human destiny.

Give purpose to others and give more meaning to experiences of motherhood/fatherhood.

Posess a unique world view that many can learn from.

Have a killer smile. Caution: contagious.

Enjoy creative non-pedal mobility.

Express a keen interest in adaptive art technologies.

Challenge and overcome stereotypes, stigmas, and yes, even medical odds....

Remind others that for every known there are probable six or seven unknowns. We actually know very little....

Enjoy an unusually long attention span, ability to focus.

Be keenly conncected to sensory environment.

Act as a scape-goat for their mother's failure to be organized and tidy.

Look great in glasses.

Like Abba disco DVDs. Who wouldn't want a revival?

Appreciate that cerebral palsy/motor impairment provides comedic relief to the diciplined practice of yoga and other balancing arts.....teaching others that sometimes it's okay not to be so self-centred in gravity....

Serve as an ethical and moral compass for families, communities, and our world.


I fear the day when medical labels become social realities, when the scientific expertise of Neos and other medical sentinels of scientific knowledge means that parents and children must accept perspcriptions like: poor outcome, failure to thrive, abnormal, disorderly.....imperfect, less than miraculous. Why can't we get rid of the deficit model that fuels quality of life measurements and accept all of life's anomolous, albeit manufactured perplexities?

I fear that parents too easily swallow empirical (need I also say fallible, and eugenic) knowledge about "quality of life", allowing it to pass into truth, uncritically. Why must quality of life always be dominated by medicalized knowledge and measurements? Why do we overgeneralize medical expertise and use it to describe and define the very way we live, move, experience each other socially and emotionally as human beings. Why can't we begin to measure quality of life by the simple beauty in parent-child moments - like how a mother feels when her son asks her to read him a book; they read it, they go to sleep, and they are peaceful. Why do people feel the compulsion to project a poor qualifier on that moment instead of asking - Hey, what book did you read to your son?

terri w/2 said...

Jo, forgive me, but at this moment, I'd have to be some kind of schizophrenic saint to adhere to these suggestions.

I just arrived home from my daughter's bedside 2 hours away in the PICU. She underwent surgeries yesterday - one to replace a baclofen pump, the other where she was surgically opened from the back of her neck down to her buttocks to have a rod implanted in her back. She is currently on a ventilator, she has 3 IV's - one in each arm and one femoral. Her only "good" arm is tied to the bed so she does not dislodge the IV's the ventilator, the foley, etc. etc. The IV pumps are lined up in a row with perhaps 6 different meds and solutions flowing in to her. She was heavily sedated throughout the night (thankfully), but today the weaning of the ventilator starts - which means she must become less sedated - which means she will be in horrible pain.

This is so wrong.

I left the hospital to go to one of my nursing classes and came dangerously close to breaking down in class when a caring classmate asked how things were going. .

I cannot put on a happy face and pretend that neonatal did good things for my child and that if I simply look at life differently, all will be well with the world.

jo said...

Oh Terri....
What a day you've had. I am truly truly sorry. I didn't mean to invalidate your experience, or any other experience of disability/prematurity that unfolds like this.
The purpose of my post was to expand the idea of "outcomes" to include other experiences beyond the hospital bedside. There is not simply poor and good quality of life, but every variation between. Outcomes unfold like a pendulum. Unfortunately, we're speaking from different points along the pendulum. I hope you can see that I'm merely trying to provide a more inclusive account of neonatal outcomes. "Your fellow man" suggested that there is no absolute answer for the ambiguity of neonatal outcomes. So too is it impossible to generalize any one given experience of neonatal outcomes to manufacture an equivicable truth or ethic that will guide families and practitioners through the murk. That's all I meant. While we may not share the same experience or thoughts at this moment in time, Terri, you and your daughter are due all of the compassion that I have to give.
Best,
Jo

Helen Harrison said...

To Jo:

You say you have been "navigating" disability with your daughter for many years. How many years?

Anonymous said...

My question is are my boys, who were born at 27 1/2 weeks going to have problems? I am so convinced that there is going to be something wrong with them but dont really know.
Am I the reason why they will have problems? Since I couldnt carry them further? Mother guilt rearing its ugly head.
I guess i should say that I am very new to this discussion as my boys are 9.5 months gestational age.

Mary said...

Jo, thank you for what you wrote. It is so much more articulate than what I could of put together. I am the mum of three ex prems, the middle daughter with CP. I guess to some I am still a novice, I am only six years down the disability path. I don't see us as a family living under comforting lies. I personally find it difficult with the assumptions of "we" when it comes to the study Making Lemonade. Not all parents raising an ex prem (or two or three) automaticly conform to the "we" model of expectations. I am realistic about what life is like for us, I am truthfull to myself and to society. This is what life is for us. Not all of us live consumed by anger and negativity. I am far from telling comforting lies to myself to postpone the reality and the hurt and pain that goes with it all - get real. I've had my dark times, just like everyone else.

I hate her CP, I hate the suffering that she has gone through and will for the rest of her life but as a family do we really have to let it all consume us until the day we die. There will always be some of us that see this journey in two completely different ways. There is no right way to deal with it. Shouldn't families coming into this see that too if we are going to be open about it. I am not living in a "Holand", I don't tell myself lies to comfort myself, I don't tell society lies about our reality (good and bad), this is our reality as a family and I fully understand that. We are entitled to some peace in our lives in amongst all the terrible hard times.

Helen Harrison said...

To Mary:

If the shoe doesn't fit, don't wear it.

You say you are realistic about your life, and that is good.

I have to wonder, however, why you seem to have problems with other people who are also trying to be realistic about their lives? Why do you imply that our telling the truth about our children and the medical evidence means we are "consumed by anger and negativity"?

Helen Harrison said...

To anonymous:

No one can say for certain what any babies' outcomes will be. I know a few 27-weekers who have come through the entire experience seemingly unscathed. Some of them are even male twins.

But the odds are that most preemies will have some manifestations of the preemie syndrome.

Overall, about 75% of preemies born before 32 weeks will have a significant degree of brain injury or abnormality (as detected on MRI) by the time they leave the NICU. The degree of abnormality varies from mild to severe, and research is ongoing to define the ways in which certain kinds of damage relate to prematurity (in and of itself) and which relate to various NICU treatments such as ventilator therapy.

How the brain abnormalities then relate to long-term outcomes is also being actively investigated.

I'll be posting more about all this later, but anyone looking for info right now can try a Medline search for almost any study that includes Dr. Terrie Inder.

Her work on baboons delivered prematurely and subjected to the NICU is particularly thought-provoking.

I want to emphasize that I am not suggesting everyone rush out and get an MRI for their child(ren)-- these are expensive, stressful for the child, and won't change anything.

What I do suggest is maintaining open lines to peer support organizations, for example blogs such as this one, where you will find other kindred spirits working through the "guilt" thing and the difficulty of watching and waiting.

My own view is that mothers should not feel any more "guilty" about having preemie(s) than they would about having miscarriages. These are tragic events, to be sure, but they are *very* rarely the mother's fault or anything that could have been prevented.

Some pregnancies go wrong for reasons that are simply beyond our control or understanding. For me it was food poisoning. For others it can be pre-eclampsia (which is caused by a placental problem -- and the placenta is created by the fetus -- so do we blame the baby?).

Multiple pregnancies are at very high risk for complications leading to prematurity. Why some women carry twins to term (or almost to term) and others don't is a mystery.

In coping with the emotional after-effects of Ed's birth and diagnoses, I found that physical exercise was invaluable. After running a few miles or jumping rope (on the days I was housebound), I had little adrenaline left over to expend worrying about matters beyond my control.

Physical activity, peer support -- and of course my family's (particularly my husband's) understanding, help, and sense of humor-- are what has sustained me for the last 31 years.

Chris and Vic said...

Jo's observations:
That adaptability must be our destiny, and that people with diabilities and their families may be the most expert adapters. AND that those around us, schools, neighborhoods, medical clinics, can learn a lesson--they must!--adapting to those with disabilities. We must ask for and expect more than ramps for wheelchairs and handicap accessibility--we must have open minds that are accessible.

Yes, moral and ethical compass.
Tonight, on the 6 o'clock news, there was the coach for Marquette, in a wheelchair! And there were the players, treating their coach with respect, and attentive to his coaching. And there was the coach, sounding like he knew his team, like he knew what he was talking about, a good coach. And the media featured him, and he is in the public eye. And that feels right and it is inspirational.

jo said...

Hi Chris and Vic,

Thanks for your post. It made my day, nailed my ramblings down with succint clarity. Absolutely....we must make minds accessible....this is the most important advocacy work that can be done. Less tangible that stats and figures and policies, perhaps.....but the most profound, by far.

Adaptation has always been and will always be human destiny. For me, I am greatly inspired to have learned all there is to know about adaptation through my relationship with my daughter and her disabilites. Despite all of the pain and sufferring that accompany experiences of disability, I simply cannot imagine what will become of society in the absence of these kinds of relationships - relationships that have the capacity to change communities, change minds, change ideals.
I wonder what happens to destiny if disability is cleansed/cured from the adaptive human experience. What is left to guide us, ethically? Unrivalled, unbridled technology? Yikes! If suddenly no one had to bend at the knees in order to learn from a coach, a peer, a stranger on wheels, the world would certainly be less inspired. My world would be, anyways...

Anonymous said...

As a doctor and a parent I read the above posts with a complex set of emotions including sadness, despair, anger, hope, sympathy, and confusion. I recognize the difficulties that are life-long with children born premature and how these are often not address early on. It is difficult to actually hear and process statistics when your baby is near birth or on a vent in the NICU. Of course neonatalogists should most certainly be plain and forthcoming with the numbers, but sometimes this information is not completely heard by the parents being told. This is just the nature of the stress and confusion that surrounds the NICU and the problem of prematurity I always try to be as plain as blunt with parents as possible, but it is often difficult to properly convey the difficulties and possibilities to parents who are certainly stressed out to the max. I do think these forums are important and should include physicians, so that we can hear your feedback, because ultimately this process needs to be a group decision.

John & Becca said...

I am sorry your daughter is so uncomfortable. We just had our daughter at 27 weeks. My questions was always, "Is she going to be OK?". I wish they(we)had a crystal ball. That is always a parents concern. Thank you for you blog. The honesty is a comfort.