Saturday, February 17, 2007

Why I feel the need to...

Why do I feel the need to speak out?

Bear with me everyone, this is going to be a long blog and one that, hopefully, will allow you all to understand me a little better.

I was alerted to a recent thread on a popular website, where I was mentioned.

http://boards.babycenter.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=bcus2565&tid=3167

The topic of the thread was "knowing what u know now, would you do anything differently regarding NICU care?" I was instantly hooked, based on the title. My first thought was that it is nice to see other parents being proactive toward future care. This is not the case. A person posted that they would not resuscitate their preemie before a certain gestation. This was not received well. Then someone linked my blog (thank you, who ever you are) and quoted the post where Helen was listing issues relating to prematurity. This opened the flood gates for other parents to harshly criticize the author and then both myself (TPE-the preemie experiment) and Helen.

"My opinion about TPE and Helen Harrison is that they are VERY bitter women who are still angry with the hand they were dealt. Both rally behind a viel of "education" about the "hidden" risks of prematurity but I get the feeling from reading their writings that they just don't want to admit and acknowledge the truth that there are many, many good outcomes... because they consider the lives their children lead to be terrible."

After reading this I decided it was time to tell the story of how I was able to see the importance of accurate information given to parents and the parents right to choose.

One day a friend of mine asked me to join her for lunch. She was meeting a first time client and thought that her and I would like to meet since the client's daughter was born early. My friend suggested that I bring my daughter (who was around 2 at the time) so the 2 kids could play together.

When we arrived I was surprised to see the client was without her daughter. As we started talking we realized that we had a lot in common. Both of our girls were born at 25 weeks, both of us had premature rupture of membranes and surprisingly, both of us delivered at the same hospital (this was odd because the hospital was 90 minutes away).

I opened my trap and started spouting off about how I was frustrated with some preemie moms who say that they wish their baby had not survived. I told her about how the neo at the first hospital told me that I had the right to not resuscitate our daughter. I proudly told her how I flipped out on the doc and that I was then transfered to the 2nd hospital (the same hospital she delivered at) and how they told me that their interest was in saving my baby, and my care came 2nd (I haven't gotten into this much but I will at a later date). I must have gone on for 15 minutes about saving preemies and how mine was such a miracle. I was so immersed in my own glory that it took me a minute to realize that "the client" was looking very angry. I shut my mouth long enough for her to collect her thoughts. She then said,

"I wish someone had given me the choice."

She went on to tell me that the doctors at the hospital told her that her "job" was to endure the time she needed to in order to save her baby (her water had broken and she was admitted). Even though she was telling them that she wasn't feeling good, they ignored her. (this also happened to me at the same hospital-a story I will tell another time). She asked them about having another baby if hers did not make it but they just kept on telling her that her baby would survive. She asked them about statistics but they just kept on telling her that she needed to relax (again-also happened to me at the same hospital).

The time finally came when her daughter needed to be born (due to infection-secondary to PROM). She lost a lot of blood during the c-section and ended up losing her uterus. Her daughter did survive but was massively affected by her early birth.

Again she said, "I wish they had given me the choice. I wouldn't have agreed to all of the meds to stop labor. My daughter suffers so much. I couldn't bring her here today because there is no room for her equipment at this restaurant. I can't even have more children."

My world changed that day. I was able to see "the other side".

The parents MUST have the right to choose! The parents MUST be given information; the good, the bad and the ugly. I realize this is an uphill battle because so much of the information that is out there is either outdated or conflicting. But we all MUST work towards a solution.

By working together (parents, NICU staff, media, researchers, etc) we can create a NICU environment that respects everyone. The parents will be informed and the babies will receive treatment that is constantly evaluated and updated.

I know it sounds impossible. I'm not willing to give up yet though.

If what we post about here is hard for you to read, we understand. But, don't judge someone based on a life that they live and you do not.

I am not bitter. I am passionate.

35 comments:

Long Time Listener said...

I think those who have been around the world of prematurity a while now , and by that I mean at least 10 years , have learnt the value of waiting and watching.
I can only assume that those who have criticsed you are not in this position ? How many times have we all listened to those new parents out of the units, full of optimism and hope, tell that they have a miracle child?
And we wait.
And then we get the call from them aksing why their child is struggling at school. We suggest they talk to the Special Ed co-ordinator sooner rather than later
And we wait.
And then we get the call from them asking why they are SO literal in what they say and do and So precise. We suggest they see a developmental paed, sooner rather then later.
And we wait.
Then they get the call that they STILL can't ride a bike.SO , we suggest a call to the Occuptional Therapist to identify what is occuring.

I hope those other bloggers do reflect as their child grows older. Helen Harrison and anyone else who can tell it how it is for them are not bitter. They are experienced and have learnt the value of time in these childrens' development.
Patience is a virtue and we have it in bucket loads because our children have taught us it. Spread the word.

Anonymous said...

As a Neo in training, I've learned a great deal reading your blog, Neonatal Doc and Tales from the Womb...My question/comment is in regards to antenatal counseling...

When premie moms are admitted, I give statistics re: survival and long-term outcome from major disabilities (i.e. the EPICure data)...and I do mention to parents they have a choice (if before 25 wks..per the new NRP/AAP recs)...but when a mother is on Mag and in trendelenberg, it is a very difficult thing to do...there really cannot be an "informed" consent...also, every mother I've spoken to has been anxious, etc (as I would be also) and I doubt really "hears" what I'm saying...after talking about survival & blindness, etc, how on earth are they going to "hear" about ADHD, social issues, etc?

It's also been my experience (all except one mother) that parents want everything done no matter what (at least in the delivery room...our hospital is VERY good at helping parents move towards comfort care if it is indicated)...

Helen Harrison said...

To Anonymous:

I have a friend who works as a volunteer in a large hospital where many moms are on tocolytics to stop preterm labor.

The mothers are all informed about outcomes in a general sort of way, and everyone has been fine with that, until one night CBS broadcast a program on Miracle Babies -- Two Years Later. All the moms on the ward watched it and totally freaked out!

Although the tone of the program was optimistic, and the parents all smiled and made positive statements about their children, you could actually see the children and their feeding tubes, cannulas, oxygen tanks, braces, etc. PT and OT were shown and described, as well as such day-to-day details of life as how to transport oxygen-dependent twins to a follow-up appointment.

This program so horrified the moms on tocolytics, that several of them asked to be taken off the drugs and discharged from the hospital to let nature take its course. They all wondered "Why didn't anyone tell us these things?"

Apparently, it is one thing to be be read a list of potential problems, and quite another to *see* what these problems mean in real life.

We need good videos!

On a more general level, I would say that outcomes of prematurity should first be addressed in high school biology and "family life" classes. Then reinforced by the prenatal caregivers, with all expectant couples given information about outcomes and options at every point in pregnancy in which a viable fetus is a possibility.

Prenatal directives may also play a role here, at least in getting couples thinking about difficult issues and in learning the philosophies of their local caregivers and hospitals.

Finally, the media and organizations such as the March of Dimes need to be encouraged to deal with the issues surrounding prematurity more fully and honestly. The public needs to know the reality behind the inspiring stories -- such as the one I saw on television just last night: "Miracle Baby Saved with Viagra!"

Monkeyhead said...

I am the one you have quoted here and I have been around the world of prematurity now for 24 years.

When I was 15 my brother was born at the edge of viability. And while not a micro preemie by today's standards, he is still a "miracle" baby. He has very, very mild CP that has manifested itself in his inability to fully bend his right leg (only about 90 degrees of movement). Other than that, he is fine. In my opinion his outcome is very good.

As you know from my post on that thread, I have two preterm infants. One of them is likely to have a "bad" outcome by most people's standards due to a brain injury. Living with that is very hard. And if I had been given the choice of taking him off life support after I found out his diagnosis, I'm not sure what I would have done. His Neurologist has painted a very grim picture about his future.

But despite this, I, like other Moms of preterm infants, NEED hope. They need to bond with their babies and not evaluate every movement they make (or don't) with the thought, "is that normal?"

Our decisions have already been made in the NICU. We must believe that we have made the right ones so that we can face the challenges of raising our children.

So please forgive us if we do not- can not- agree with the statistics. Maybe we are burying our heads in the sand, but we can't change the past and we have to have hope and strength for the future. I know you can understand that.

I apologize if my calling you bitter was harsh. I do not walk in your shoes.

Helen Harrison said...

To monkeyhead:

Why are you on these lists and blogs?

Why not just shut out any information that might stop you (or others) from "bonding" with your babies?

And why is your (or others') ability to "bond" predicated on a normal outcome?

If you really can't bond with your child/ren knowing what life is like for other preemies and their families, just turn off the computer, and the TV, and cancel your subscriptions.

You can do this easily and without maligning others.

Lori said...

As somewhat of an outsider to this discussion, I may have a slightly different perspective. Because my 23 week old twins died shortly after birth, I am not in the position to speak to what life would have been like raising them had they survived. I don't really fall on either side of this discussion, and so perhaps that gives me a small amount of distance.

I have read a lot of these blog "debates" and I honestly hear both sides. I don't read this author or Helen Harrison as "bitter" or even narrow minded. As I read their views, they are not advocating for NO resuscitation ever, they are simply pushing for more and more parental education and control, caution in the practice of neonatal medicine, and the rights of parents to express openly the reality of their daily lives raising a premature child. Those are all good and valid causes to have.

On the other hand, I can also understand the defensiveness of parents raising a premature child who either have not experienced the wide range of potential disabilities that can go along with prematurity, or simply can't bear to suggest that their child should not have been given the right to life. I sympathize with monkeyhead when you say that your decisions have already been made. I have to live with that same reality in our "choice" not to have heroic measures taken to save our twins (I say "choice" reluctantly, because we really didn't feel we were given much of a choice). Our twins are gone and no matter how much I would love to change that reality, I can't.

However, in the end, I believe we simply must allow parents of preemies to safely express their deepest emotions about their child's reality. I don't for a minute doubt the love that these parents have for their children. But why isn't it okay for them to still feel unhappy about the ways they feel as though they were misinformed, mislead or simply not listened to?

If your premature child is in that small percentage where they truly do seem to be progressing through life with minimal challenges, then celebrate. But you can do that and still offer support and understanding to those parents who have not been so fortunate. And if it is too painful to enter into discussions that allow for the possibility that not all babies should be resuscitated, then spare yourself the pain and don't join in.

TiredPreemieMom said...

Wow Lori very well said! One thing of note about the babycenter board in question is that even more than preemie-l the membership on babycenter is mostly parents of preemies that are 2 years old or less. At the same time there are some very seriously impacted kiddos. Something I have noticed is many of the moms downplay/use unrealistic optimism when in reality an outsider could very easily see that the outcome is grim. A good example is a comment on the post that started this. One mom said to other moms who might have a baby in the nicu "dont worry your baby will come home fine and healthy" Uh no see thats not true. It MAY happen but it is unfair to set them up to think it WILL happen. Oh and dont get me started on the "god wont give you more than you can handle" Really?? Sorry I strayed so far from the intended response to the blog. It just burns me up. Oh I must be bitter also...
P.E. Blogger and Helen, keep up the work. John and Jane Q Public need to hear the truth.

TiredPreemieMom said...

Wow Lori very well said! One thing of note about the babycenter board in question is that even more than preemie-l the membership on babycenter is mostly parents of preemies that are 2 years old or less. At the same time there are some very seriously impacted kiddos. Something I have noticed is many of the moms downplay/use unrealistic optimism when in reality an outsider could very easily see that the outcome is grim. A good example is a comment on the post that started this. One mom said to other moms who might have a baby in the nicu "dont worry your baby will come home fine and healthy" Uh no see thats not true. It MAY happen but it is unfair to set them up to think it WILL happen. Oh and dont get me started on the "god wont give you more than you can handle" Really?? Sorry I strayed so far from the intended response to the blog. It just burns me up. Oh I must be bitter also...
P.E. Blogger and Helen, keep up the work. John and Jane Q Public need to hear the truth.

Anonymous said...

I agree wholeheartedly. Although this is a situation that I am for, but not in my personal life. My son is a 27 weeker (Now 37 weeks gestation) who was born with 24 weeker lungs due to prolonged PROM. They were surprised when he lived through his first night, much less 2 months. Now words like ventilator dependent ( for his first year or so ) are being thrown around. It is still an unwritten book, as he is just beginning. In a year, maybe I will feel differently. Today, I am thankful for his determination and that his brain was not damaged due to a hemorrhage...as for further down the road, who knows? My daughter was born at 32 weeks, also due to PROM, and she has CP and Sensory Integration Dysfunction, and as for her mental capacity, I have no clue. I suspect it to be below average, if not well below, but they seem to have every expectation of him being higher functioning, mentally than my daughter. If they are wrong, well...It is something we will just have to deal with as it unfolds. I am haunted by a memory from childhood. My aunt's best friend was married, their first child was born, and it was discovered their full term daughter was severely mentally retarded, she never reached a capacity mentally above the age of 18 months, maybe two. The mother stayed home with her, eventually grew depressed and committed suicide. The husband (my aunt's best friend) was now a single father with a severely mentally handicapped child. He finally put her in a group home when she was seventeen, due to her burgeoning sexual awareness and his growing discomfort at raising a seventeen year old two year old with a growing sex drive. I think of these children, after their parents die, left in homes where care is marginal at best for most average non wealthy people. I support awareness, prevention, and freedom of information. On both sides of the fence.

Long time Listener said...

Monkey Head
Can we ask~ what gestation and weight was your brother born at please?

Anonymous said...

I am the person that made that original post on babycenter.com

Thank you for the email offering support. The hate emails I received from the people that post on babycenter.com would make anyone cry. I do not apologize for the way I feel.

I did not actually read the entire thread and do not plan on returning to that website as I do not feel I am 'in the same place' with my feelings regarding prematurity as they are.

My daughter was born at 28.5 weeks and had a fairly uneventful NICU stay of only 43 days. We did not learn she had a Grade II IVH until her first visit with her pediatrician, despite asking the NICU staff when they gave her a second cranial ultrasound. I am still bitter of this - not that it would have made a difference.

I am also an ex-29 week preemie, born in 1978. I had a long NICU stay of more than 3 months but all in all everything was fine.

I was in a 'special education' program at my perocial school and struggled greatly. When my parents moved they decided to keep my brother (an ex-35 weeker who was later diagnosed with ADD) and I behind.

I was a social outcast with few friends. We were required to eat lunch in the lunchroom where I would sit by myself, in obscurity, and people would throw garbage at me. I, however, did not struggle with my school work.

I graduated at the 50% in my high school class and majored in music - I played the clarinet and piano. I changed my major to after the first year to computer programming - something I never thought I would be able to do, but today I work as a .NET programmer.

I am a success! But I do not discount than many born older than me have significant problems, and I do not want that for myself and my family.

My daugher continues to fail hearing tests at 11 months of age and teeters on a FTT diagnosis. Her new PT wants a neuro consult for CP as she has had no advancement in her gross motor for more than 3 months. I'm glad they are be proactive but I am scared.

I felt so alone when I made that post - and I'm very glad that there are others who share my views. I attained these views from reading blogs actually. Reading the blogs of preemies and how hard their lives were.

Prematurity is so far reaching. Divorce, bankruptcy, career changes or dropping them completely. My husband and I agreed that our relationship is the most important thing we have - even over our children as they will grow and (hopefully) leave the house, leaving us to ourselves and we don't want to sacrifice that.

I would have hated for a premature birth with a horrible outcome to make me see how horrible premature birth can be.

Medical science now makes survival at younger and younger gestation - and I do NOT think this is for the best because the other outcomes, such as IVH and gastric issues, have no advanced that far.

Thank you for this blog and for giving me the chance to speak my side. I am very glad I am not alone.

terri w/2 said...

Anonymous just above - thank you for sharing your story here! I am seething with anger right now to think that you have gotten ANY hate male from those on the other blog.

You definitely are not alone in your beliefs!

When reading the account of your life and struggles through school, what came to mind was a comment on another blog a couple of weeks back by a neonatologist that said he wasn't going to stop saving preemies because there might be a "school performance problem" - like that is just not a big deal at all. IT IS A BIG DEAL.

I have twins who were born at 25 weeks, one with a grade IV IVH that we asked to have dc'd from life support, and the neonatologist flatly refused. On my deathbed, I will look back on my life, and that will be my biggest regret, I am certain - that I did not have the strength (physically) or the knowledge to find a way to get her to another NICU that would have been more ethical.

My other twin has Aspergers, NLD and CP - she is VERY high functioning, but has struggled socially - she is quite emotionally immature. The sadness I have for her in not being able to participate fully in life due to her disability related to social difficulties is probably the most challenging thing for me. She too, has been ostracized during HS and suffered I'm certain some of what you described.

This isn't just a school performance problem - it scars you psychologically. I'm really sick and tired of the "disabled but happy" picture that neonatologists and parents who have no clue are trying to make me swallow.

Chris and Vic said...

There is an old saw in psychology about letting go of one's idealized child, one's perfect dream child, and accepting the child you have. I wonder if that isn't part of the debate being put forth.

On another list, we talked recently about "hope" being overrated and over-sold. I think this may be true IF what you are hoping for is the idealized version of your child. Conversely, accepting the child you have may be construed as finally letting go of a negatory or denial-type-of-hope.

If you accept the child you have, you may become depressed, and that is painful, so that is another reason to put off acceptance. And have "hope". I myself have gone in and out of "chronic grieving" over the past 11 years with Vic. Some days, I am pretty accepting---some days (particularly around IEP meetings) I am a basket-case. I'd love to be done with all this conflict once and for all. But it doesn't work that way. I cannot have hope that wars with acceptance.


I have 5 older neurotypical kids. When they became pre-teens and teenagers, I grieved for the good children they once were. They were miserable as teens. There was years of misery (multiply 13-18, 5 years, x5--5 kids-- = a long, long fight. My point is, even with neurotypical kids, you have to let go at some point of the ideal and accept the highly imperfect.

I want to quote a piece from the MUMS newsletter--please hang in--it is lengthy but eloquent:

I decided to take you up on your invitation and provide an update about my son, A. I thought about the various ways I could do it, such as cheerful: "He's doing so well, considering his rought start in life." Or religious: "He's a blessing in our lives." Or motivational: "He makes us appreciate the fundamental things in life." But I'm a pragmatist, so my update is, "He's disabled."
When I first started reading the MUMS newsletter 9 years ago, I wound never have used that term to describe my son. Instead, he was "medically fragile" or "special needs"---terms that described him in present terms and did not place a prediction of what his life would ultimately be. In those early years we had hope about the degree to which he could overcome the consequences of his medical problems. Now we have a clearer idea of the life-long disabling effects of his early medical problems, and now we have a better idea of what our future looks like.
And while my early hope has changed to acceptance, I continue to faithfully read your newsletter, although I've often wondered why, given that so much of it is about the pain and hardship of parents coping with the unimaginable. I decided it was because it confirmed that I was not alone in raising a child who is different, that I was not alone in my frustration and fear of the unknown. And it is somehow comforting to know that others also do not have a short answer to the question, "What's wrong with your child?"
There is the "elevator ride answer" that can be given in 15 seconds and doesn't make the listeneer uncomfortable.
There is also the long answer that's full of obscure diagnoses, unfamiliar medical jargon, intensive medical and therapeutic interventions, foreign day-to-day-reality, and grim predictions. It's the long answer that provides insight in to the recurrent grief of a parent of a disabled child. It's the long answer that reinforces the fact that our lives will always be very different fom others. And it's the long answer that is often met with the that's-more-than-I-wanted-to-know reaction by the listener. It's a MUMS parent who has to decide whether they have the time or the emotional energy to get into the long answer.
So, getting back to the update, how is my son? The short, elevator-ride answer is, GREAT. And the long answer is: He walks (but doesn't run), he talks (with some articulation issues), he eats (but is very messy), he reads (but has trouble with inferences), he tells jokes (but they aren't always funny), he likes to snack (but not sweets), he likes to talk (but perseverates), he goes to school (with a full-time aide), he's continent (during the day), and his a walking encyclopedia on presidents, American history, the civil rights era, movie musicals, and Star Wars. And as for me, I feel cheerful because he is happy, lovable, and fun to have around. I feel blessed that he is a good-natured boy and his limitations are not greater than they are. And I appreciate him for who he is and am motivated to make his life the best it can be. . . .
SE
(Her son's diagnoses are Vein of Galen aneurysmal malformation, hydrocephalus, traumatic brain injury, cognitive and developmental delays, strabismus, NG-tube fed till age 4, history of GE reflux, sleep issues, and sensory integration issues. )

Helen Harrison said...

To Terri w/2:

Some people with brain damage are happier than they were before the damage (I'm talking about stroke victims here) and others are left miserable.

So much seems to depend on the side of the brain that received the most severe damage. People who suffer predominantly left brain strokes are often quite unhappy, while those with predominantly right brain damage may actually become happier.

Reported "happiness" among preemies seems to vary with the researcher doing the investigating: some, such as Saroj Saigal, report that even highly disabled preemies are "happy campers" with very high self-esteem (higher than term born controls, even!).

Other researchers, however, find just the opposite to be true.

As for the "disabled but happy" cliche, I like the essay by Jennifer Hamilton from _Exceptional Parent_ (June 1977). Here are some excerpts:

The Dark Side
By Jennifer Hamilton

"I hate being retarded," my son, Andy, declared passionately the other day. Well, I didn't say it then but I will now: "I hate being the mother of a retarded child."

"Why should I feel the need for such an announcement?" Because I believe that many parents, myself included, have allowed themselves to be pressured into saying, and often thinking, things they don't really feel.

"Our society frequently prefers to sidestep painful or negative issues...When I mention Andy's condition to a new acquaintance 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 disturbs me as much as my reaction to them. Because I am aware of others' need for reassurance I find myself offering the comforting lie, "Oh, he's just as happy as can be."

"Then I smile confidently and quickly change the subject.

"The trouble is that if one lies often enough in this fashion, one starts to believe one's own falsehoods. I have known mothers so conditioned to being brave that they have practically convinced themselves that their child's disability is a blessing. The pages of _The Exceptional Parent_ have occasionally reflected this point of view...

"It can be argued that looking on the bright side of things enables us to live within an otherwise intolerable situation. We cannot, however, appreciate the bright side unless we are able to distinguish light from dark..

"All this was brought home very vividly recently when a friend quite casually remarked: 'You know, I can only bear to be alone with Billy for an hour at a time.'

"I was astonished. But why? Not because of what she'd said; I'd often had similar feelings myself. It was because she was able to express herself so easily and frankly.

"After my surprise came a great sense of relief, because if she could admit that her situation was sometimes unbearable, why shouldn't I?"...
***

To Anonymous who received angry personal posts after making a less than positive statement to a prematurity group:

This is what happens when peoples' coping mechanisms are threatened. Someday maybe we can get together and compare hate mail. I'm at Helen1144@ aol.com

These messages are coming from the same sort of people who threw garbage at you in high school. It is bullying, pure and simple, and it has its roots in fear. There is no need to tolerate it.

Lori said...

Helen,

Your post addressed almost exactly what I was just sitting down to say! Our modern society is so afraid of difficult and complex emotions. We want everyone to be "happy." When we ask someone "how are you?" we want and expect them to say "I'm fine." and leave it at that. The instinct of most people when faced with unpleasant emotions (ie. grief, justified anger, sorrow etc...) is to immediately find a way to diminish the emotion for their own self-preservation.

After the death of our twins, I heard pretty much every comment under the sun designed to minimize and magically eradicate my grief. "You already have two healthy children, be thankful for that." "You'll have another baby." "It happens to lots of women, you'll be fine." On and on and on... In time, I came to realize that those comments really weren't about people trying to make me feel better in some misguided way. They were completely about making themselves feel better. If they could convince themselves that the loss of two very premature babies was somehow less than other losses, they wouldn't have to feel so much discomfort about my loss themselves.

Those same people find it very uncomfortable that we still speak our babies names. They find it uncomfortable that we speak openly about the tragedy of prematurity. They find it uncomfortable that having another healthy baby after our loss didn't put an end to our grief. They can't understand how you can genuinely live in two realities. They refuse to see that life and the human heart is that complex. We are a happy family. We enjoy life and celebrate everyday the three living children we have and the pleasure of raising them. We invest ourselves fully in many activities. We laugh, we sing, we live. But we also cry. We still feel deep sorrow for the children we planned for, prayed for, loved and then lost. That reality is always there too. We live in both, and we shouldn't have to pretend we don't. No one should.

Why is it so awful for a mother to say, "I love my child, but I wish her life were different. I love my child, but I wish my life were different." Why is it so awful to want other people to acknowledge that the "miracle baby" they celebrated, has become a disabled child that no one knows wants to see? How will we ever make anything better, if we don't look at all of the parts of a very big picture?

terri w/2 said...

Lori;

Very profound. And you're absolutely correct.

Lisa - Mum to Mitch & Harry said...

I really identified with Lori's sentiments. While I feel truly blessed to have both of my twin boys after their precarious start to life, there are times I wish that life hadn't been so cruel. True my boys are active and energetic...but in the back of my mind always lurks the knowledge that life could have been easier...that Harry shouldn't have scars all over his tiny body...that Mitch shouldn't struggle to speak more than one word...

And yet there is a guilt associated with these feelings.

Surely I should be grateful that my boys are alive?

Surely I should be grateful that both boys have come through this time relatively unscathed?

Believe me I am. Especially when I meet other parents whose precious babies died before ever coming home or whose children are so impacted that they will never live independently.

But deep in my soul I grieve for the trials my boys have faced and continue to face. BUT it is my guilty little secret...because I am continually told how lucky I am...

I believe the gift we can give each other as parents is to acknowledge that we do struggle with the injustice of this life, that we do question "why me?" sometimes in the dead of night and that sometimes we wish things had turned out differently.

Do I love my boys?
Absolutely...to the moon and back!

But do I wish our life had been different?
Yes - but only a few will ever know...

Helen Harrison said...

To Lisa:

I think you've really identified a major ambivalence that we all feel as parents of preemies -- an ambivalence that, when unacknowledged or misunderstood, leads to the sort of hostility we are seeing now on some of the lists and blogs -- for example, on Neonatal Doc's blog where I was just labeled an "abusive mother." (And I thank you for your spirited defense!)

We *all* love our children dearly -- that should go without saying --but none of us wanted them to start life the way they did or to suffer from the on-going disabilities and problems that come with prematurity.

The fact that others can't acknowledge the fact that these two valid feelings can coexist (our love of our children; our grief at the facts of their lives) makes it difficult for us ever to express ourselves fully and honestly in public.

When I was interviewing parents for "The Premature Baby Book" more than 20 years ago, every parent began by saying how grateful they were to the doctors and/or God for saving their baby. But as the interviews and friendships extended through the years, inevitably the parents would "come out" and tell me their "dreadful" secret -- that at some point they had just wished it could all be over, that the baby would die.

Once they had made this confession, and heard me say, yes, I'd felt the same way, they seemed to feel so much better.

It is as Jennifer Hamilton described it "The Dark Side" essay (above) you have to acknowledge the dark to see the bright.

Lori said...

Helen,

I hadn't checked in recently on Neonatal Docs latest thread, and was appalled to see such a personal (and ridiculous) attack. I admire your ability to weather such hostile accusations and your courage to hold fast to your convictions.

Lori

Lori said...

Lisa,

I appreciate you having the courage to share your own "dual reality." Life is full of contradictions, and yet sadly many people want life to be much one dimensional than that. They can't leave room for feeling gratitude and grief, happiness and sadness, joy and regret all at the same time. I have to admit though, that there was probably a time I was equally shortsighted. Since the loss of our twins, followed by the death of my father, I am continually amazed at how many emotions the human heart can hold.

terri w/2 said...

Helen

It's my feeling that the comment on ND did not come from another parent.

The Preemie Experiment said...

Monkeyhead wrote: "But despite this, I, like other Moms of preterm infants, NEED hope."

and

"So please forgive us if we do not- can not- agree with the statistics. Maybe we are burying our heads in the sand, but we can't change the past and we have to have hope and strength for the future."

Monkeyhead,

No one is taking away your hope. We are all trying to give future preemies a better chance and make sure that parents have the right to choose. You are right, we can't change the past but we can change the future. If you are not in a place in your life where you can take on some responsibility for the future (even if it not be your own), no one is blaming you. But, please don't criticize us who are trying to make a difference.

Can you imagine what preemies would be like if no one cared about the outcomes of past preemies in order to alter procedures to benefit future ones?

The Preemie Experiment said...

Tiredpreemiemom said, "Oh and dont get me started on the "god wont give you more than you can handle" Really?? "

Your statement brought back memories. So many people said this to me when Paige was little. When she was a baby she used to cry every waking moment. One day I snapped. I put her in her crib and walked outside and screamed at the top of my lungs, "You picked the wrong damn person to handle this child God." I went inside, cried for an hour and was better.

The Preemie Experiment said...

Anonymous said, "I am the person that made that original post on babycenter.com

Thank you for the email offering support. The hate emails I received from the people that post on babycenter.com would make anyone cry. I do not apologize for the way I feel."

Hi Anonymous,

I am so glad that you found us. I can understand hate mail as I have received my fair share of it over the years. Now that I started this blog, the hate mail has increased, mostly from people who know me from the various preemie groups. I can hapily say, my skin is finally getting thicker now that I know there are others out there that feel the same way as I do.

Welcome!

The Preemie Experiment said...

Terri w/2 said, "This isn't just a school performance problem - it scars you psychologically. I'm really sick and tired of the "disabled but happy" picture that neonatologists and parents who have no clue are trying to make me swallow. "

I agree with you Terri!

I'm still waiting for "but happy" part of disabled with Paige.

The Preemie Experiment said...

Lisa wrote: "Do I love my boys?
Absolutely...to the moon and back!

But do I wish our life had been different?
Yes - but only a few will ever know...

I can uderstand this emotional struggle. From the responses on this blog, we can see that we are not alone.

In this leg of my journey, what I find difficult is the "look" I get from family when discussing Paige's issues. The "look" easily translates to "you sound ungrateful that she survived".

I hate that look.

Lickety Split said...

Glad I found this blog.

Ex-preemie. 28 weeks in 1969.

Doctor too.

My life hasn't been perfect but I would make the following observation. Any patient needs frank advice from their doctor about the likely and less likely outcomes (good or bad). This information needs to be given in a clear, concise manner that's understandable on a layman's level. Many doctors these days aren't the best at explaining things but it's up to the patient to be prepared to ask questions if they don't understand.

The choice to be aggressive with the extreme preemie is a personal one. As someone astutely pointed out...there are no guarantees and unfortunately, I see that as what many patients and families want these days.

They want guarantees. They lose sight of the fact that the human body does not carry a warranty. Most people on this thread are well-informed but I would be very careful about flaming someone else's desire or lack thereof to raise a child in similar circumstances. For my parents it was never a question.

At the time of crisis is not the time to ask a suffocating patient if they want a ventilator. Similarly, the time of crisis is not the time to ask mom and dad pointedly about whether to proceed and expect a well-thought out answer.

Fathers and mothers should be happy when they are pregnant. They shouldn't dwell on the possible negative outcomes but they should be prepared if that question is ever asked of them.

Lickety Split said...

Sorry, forgot...

Just because we CAN resuscitate a baby at less than 25 weeks, that doesn't mean we should.

The possession of technology does not alone merit its' use. It is the wisdom in choosing how best to use that technology that defines an advanced medical system.

For those of you who think that optimism is a load of bunk, that's your prerogative.

For those of you that insist on optimism...may you be blessed with continued patience and perseverance.

Neither side is wrong on a greater level but I won't say any more as to which side I fall on.

Melissa Clouthier said...

I gave birth to identical twin boys at 24.5 weeks. I made two choices. My one son was infected with MRSA and enduring multiple system failure and on day 11 post-birth my husband and I made the decision to take him off life support. He still had full brain function. He had only a grade 1 bleed. Perhaps he could have survived.

Both were fraught with difficulty. Both have had forever ramifications.

It is easy to pontificate about what one would do, but so often the choices are made for you. No doctor will allow a parent with a preemie who is responding to treatment to disconnect the tubes. It's called murder. They won't do it. So in a sense, the technology removes the choice. Now, a parent may sign a DNR and should an event happen the choice is made.

My surviving son had these complications:
Bilateral ROP corrected with surgery
PDA corrected by surgery
BPD and long-term vent use
Bilateral nephrocalcinosis

At two, he was diagnosed with autism. We began significant intervention.

At four, he still was pretty much nonverbal. He still had to be fed by me (forced to eat). He was nowhere near potty-trained.

At six, he got day-trained. At seven he started pooping in the potty. Hallelujah!

At six, we had his eyes checked. We were told that he would be either partially blind or have no peripheral vision. His vision is 20/20 in Left eye. 20/25 in the right. His pediatric opthomologist cried and so did we. A true miracle.

Every year at school has been a trial. We have pushed them and him to succeed. This week, he will be fully included into the classroom with some modifications. He has been in special ed since age 3. (Early intervention before that.)

He still can't ride a bike. Who gives flip?

He has trouble with running. He's working on it.

He has weak fine motor. He still can't button a shirt, zip a zipper. He can hold a pencil. He is writing. He still stims some. He has concentration problems. He still doesn't like to poop, but does it and even wipes his own rear now. (Well, most of the time.)

He came home on monitors and oxygen and multiple meds. I weened him in two weeks of the meds. He stayed on oxygen for about six weeks. We have modified his diet. He takes extra nutrition.

I nursed him for 18 months. (Pumped for the four months he was in the hospital and then two months more at home, transitioned him to nursing.) I think nursing really helped his skull development and by extension his brain development.

It has been a long, hard, slog. Would I have opted to save my other son had I had the choice again? Maybe. When I look at my surviving son, my heart aches for Andrew.... I know exactly what he'd look like.

Could my marriage, my sanity survived a severely challenged child in addition to my surviving son? I don't know. I've been very blessed with my son. It could be worse. For 90% of parents it is worse. That's a big number 90%. My son is one of the 10% good outcomes. He wouldn't be considered severe and even still the work I do to parent him is twice what it takes for my other two (some days).

I think people on both sides of the argument want to feel good about their choice. From my perspective, there is no "good" side.

And yes, parents should see videos of the kids at age 4, 5, 9, 15, 20. I don't think though, that a person can be adequately informed while swimming in the sea of oxytocin and desire for a baby. No one wants to "give up".

Helen Harrison said...

To "the preemie experiment" who said:

"In this leg of my journey, what I find difficult is the "look" I get from family when discussing Paige's issues. The "look" easily translates to "you sound ungrateful that she survived". "

I can't even begin to imagine the pain when family members do not understand. I was so "lucky," I realize in retrospect, to have grown up with a brother who was disabled (mild autism and/or mild schizophrenia).

Because my parents had been down this road before, and we all knew what it meant, even in the best of circumstances, we were always on the same page about *all* of this. They shared with my husband and me their unconditional love, support, and their sometimes very dark humor about our situations.

I don't know what I would have done without them!

My brother (who was not born prematurely) would have been considered "normal" by preemie follow-up standards and yet his abnormalities were apparent to us from birth. He screamed constantly and on cue (infant Tourette's Syndrome?) and had lots of "soft" neuro signs.

His life has been difficult,including psychiatric hospitalizations, and he is only living alone now because my mother died not quite a year ago. We all miss her terribly.

The rest of the sibling are trying to do what we can to help our brother live "independently" but as close to one of us as possible, so we can be there for him when the seemingly inevitable problems arise.

My mother and I often used to comment that, in a way, I had the easier situation because Ed was visibly handicapped and had a clear-cut diagnosis (at least by adulthood).

On first glance, however, my brother can appear normal which has led to some very unfortunate interactions with the police, among others.

Ryn Tales said...

I think it is never black and white. I am so grateful my daughter survived and I like the woman you wrote about can't have any more children. I love my daughter and I am sure I am a far better member of the planet having gone through all this than before. She is the love of my life.

On the other hand, today I am exhausted and have pinched nerves in my elbos and hands from lifting her. She doesn't sleep at night and i am tired. I would not have changed a thing I did in the NICU except maybe to protect her from the quack that reinjured her brain and did not monitor her hydrocephalus well. I think she would have been better off.

But - I do think it is important for doctors to paint a realistic picture of what life will be like. Also, the heart breakingly scary thing I face as well is the fact that there is a shrinking continuum of support for people with cp the older they get. I am going to have to live to be 140 to take care of her for her lifetime. It's incredibly hard to see her suffer as much as she has - and I am not even talking about the NICU but daily life with CP.

It's a mixed bag - not black and white at all. I think it's important not to judge mom's who may be suffering in their exhaustion of caring for very disabled children. If society had more support for them and people were not so stupid about disability in general - maybe they would not be feeling so bad as to wonder if saving their child was the right thing to do.

Anonymous said...

I read this thread (the OP comment about if she would choose extraordinary medical intervention for a micro-preemie again under a specified gestational age, or not, and the resulting hate mail.)

The phrase "God doesn't give you more than you can handle" came up a couple of times, as well as suggesting that children with parents of faith (insert fundamentalist Christian faith here) had better outcomes. I had to laugh.

I started fighting for our twins' lives at 22-23 weeks. I was able to starve off delivery until the ever coveted 28 week mark. They were both girls. And they both died anyway. It was sure a lot more than I could handle. I was suicidal for at least a year.

I am a Christian. As a group, my Christian friends just assumed God was going to take care of my healing, and left me to it, and tried to comfort me with platitudes when I complained, the biggest one being that this was all part of God's "plan". My "other" friends were the ones that actually took the time to demonstrate the love of Christ and walk with me. They were the kind that would think to watch my four year old for an afternoon, and demonstrated amazing patience with my grief over our lack of "miracles" as I found my way. They were also much more likely to show they valued my children's lives by listening to their stories (over and over) instead of expecting me to just get pregnant with my next "miracle".

I learned the huge difference between having "faith" and imposing it on other people, and simply demonstrating love. I came to prefer the latter. I don't think that would have been different had my "miracles" lived.

The Preemie Experiment said...

Anonymous,

I am so sorry for your loss. I know there aren't any words that I can say to ease the pain, but please know that I appreciate your comments. I know there are other mom's out there that will find comfort in your words.

Thank you!

Anonymous said...

You are very sweet, thank-you.

I just wish those fortunate enough to have "miracle" children with no or manageable disabilities would stop testifying about how great it is and how wrong everyone else is, and go find a struggling mom who DIDN'T get that outcome and go over with lattes or mochas and throw in a load of laundry and help vacuum cracker crumbs off the living room rug, instead of telling her she's "wrong".

And if it's a Christian mom with a great outcome, or a miracle, stop just saying how great is God's love, and start actually demonstrating that love in your own life. We have a Biblical commandment to share one another's burdens, not to judge each other's faith.

God bless you, and your blog is awesome. Wishing you tons of wonderful girlfriends! The next time I'm throwing a load of laundry in for my girlfriend on bedrest, trying NOT to have a preemie, I'll think of you!

imsonotyou said...

I was born about a month early and my was to be older brother wasn't a preemie but would of survived and lived to see today if the doctors let my mom have him early. When they did let her give birth he was already dead and was unable to recesitate. WildStar:1993-1993