Monday, March 12, 2007

I Wouldn't Change A Thing!

You wouldn't?

Well, I would!

Whenever I hear someone say that they wouldn't change anything about their premature child; the birth, the experience, the outcome, etc, I am left confused. How could anyone WANT their child to go through all of the pain and limitations that they experience? How could a parent want to watch their child suffer?

I love my daughter with all of my heart and soul. I am completely committed to helping her live an independent life, hopefully free of physical and mental pain.

But, if I could go back in time and change the way she entered this world; let her cook a lot longer, I most definitely would do so!


Miss W said...

I would give anything to change it. I don't want to change who he is in any way...maybe if I could have had his arrival when it was but without the temperature instability and the tubes and the wires and the pokes and sticks and isolettes and return trips to the NICU and...

You have just had him without the need for any of the other aspects of it.

terri w/2 said...

Absolutely, you're right. How could anyone sane say that they would not want to change this birth situation, the horrible pain of the NICU, the outcomes? There probably has not been a day in the past nearly 21 years that I have not wondered what my girls would have been like "if only". .it is a hard, hard thing to know that these genetically perfect children are living such horribly damaged lives thanks to their extreme prematurity, NICU treatments and complications thereof.

munkeesmama said...

I'm a bit baffled by that statement as well. If I could I'd give her more baking time and would have delivered her full term, in a natural way.

Jennifer said...

I would... and I can't help but blame myself. Today is my daughters birthday and I dedicated today's blog post to that very subject. It makes me very sad to think that her start involved being whisked away from me (the only 'safety' she's known) and put in the care of other people (whom she doesn't know). Ventilator tubes? IV's? Blood draws?

I cry for her, nearly every day, that the supposed safety I was to provide didn't include medical procedures. I can't help but fee like a failure.

Ex Utero said...

I don't want to trivialize what you're all saying here in any way. I couldn't agree more with the sentiment that of "I'd like to see prematurity go away". I'd love to put myself and the rest of neonatology out of business tomorrow. I'd be happy to be a part-time general pediatrician in rural Montana and write my memoirs about curing prematurity (but I digress).

I can't help thinking that there are so many things that we would all change if we could.

I would change the fact that I didn't realize my father was riddled with metastatic cancer. I would go back and use my doctor skills to pick it up 6 months or a year earlier and maybe save his life. I would give quite a bit to still have him around.

I would have sunk my life's savings into preventing hanging chads to keep this idiot of a president from getting elected in 2000.

I would have done a lot of things different if I'd had the gift of fore site. As would each of you. I worry that there is something about being the parent of a premature child that creates a perpetual guilt for which there is no cure. I worry that it clouds a parent's ability to see their child as an adult some day (for those children who are capable of interacting with the world as an adult - I know some will never do that).

I know there are cases where the doctors should have done a better job communicating. I know there are cases where parents want everything done and can't hear what doctors are telling them. I know that three, four, five years later a new reality sets in for those parents who have children who clearly are not going to have a "normal" childhood (and I know that some are not going to have a childhood in any real sense of the word). I don't have an answer. I only wish I could absolve the guilt.

No one chooses to have a premature child. Few parents are prepared to make decisions regarding limitations of care. Even if Helen Harrison were sitting in the room with them from start to finish, I can assure you that most parents would still either have unanswered questions or simply be unable to hear before the moment of the fateful decision to intervene or not intervene arrives. While there is no "ethical" difference between non-intervention and later withdrawal, it is apparent that our society does not find the two actions to be equivalent and many parents are less comfortable with the latter.

I think having a premature child is so unnatural that there simply is no frame of reference within our innate emotional lexicon with which to have context. I think the default is continuous worry, guilt and dread of what their future will hold. And yes, I know, we neos don't help a whole lot if we're poor communicators or if we strong arm the case by forcing medical care decisions.

I'm sorry. I wish I had an answer. I have a friend who is dealing with the guilt issue right now. She's a great mother and is doing a fantastic job with her NICU graduate. I just wish I could wave a wand and make the guilt issue go away. I really think it is a bigger issue for her and the family than the actual issues the child suffers from. In the end, it is true that many NICU survivors will be perceived as different by their classmates for one reason or another. That, in and of itself, is not a reason for guilt, but so often it seems to be the trigger. Many children go through their childhood with the stigma of being different. Some of us grow up to be doctors. Some don't. Guilt will not change events in either case, but then I suppose neither will this comment.

Ryn Tales said...

I feel similar to Jennifer. If I could have provided Ellie with three more months inutero - I would have! For crying out loud -who would wish being born prematurely on anyone?

I have never heard a parent say they would not change a thing.

I agree with doing your best to deal with the hand you have been dealt. There is a lot to be learned. But I mourn daily the loss of my healthy little girl who can talk, run, walk, sit on her own, eat on her own, is free of anxiety related to traumatic birth injury and proceeding hospitalizations and hundreds of procedures and needle sticks. Yes - if I could I would spare her all of it.

Lori said...

I wonder if the people you are speaking of, whoever they are, are of the sort that they can't help but try and find the blessing within the curse because it is the only way they know how to make sense of it. I think sometimes people say things like, "I can't imagine my life without having gone through...(fill in the blank)" because they have come through that time a changed person, and they see value in some of those changes. Maybe what they are really trying to say is, "I would never have asked for this trial, but I have emerged a survivor and for that I am grateful."

I would never have asked to lose two children to prematurity, and I would certainly change that outcome if I could, but I could also give you a long list of the unexpected gifts that have come my way as the result of our loss. I think sometimes people don't know how to reconcile the unusual blessings that can come in the aftermath of tragedy, and so they come to see the tragedy itself as a blessing. I think some people have a hard time separating the two.

But it is possible to acknowledge the gifts that sometimes arise out of tragedy, without blessing the tragedy itself. Even Rabbi Kushner, author of When Bad Things Happen to Good People, and a bereaved father himself once wrote that the loss of his child has made him a better person, a better rabbi, a wiser and more compassionate man- and he would give it all back in an instant if he could have his child back.

The Preemie Experiment said...

My post spawned from a comment that was posted on a preemie group. The parent was saying how thankful she was that her child was born early because she has met so many wonderful people (stems from the idiotic "holland" poem). Now, don't get me wrong... I love you all but I wish we had met under different circumstances.

Then, as if I wasn't aggravated enough, an email was sent to me (that clearly came from my blog) that said I should be thankful because my daughter is doing well and "all of the pain she went through was worth it".

Ummm... no it wasn't.

I have heard other parents of special needs kids say that they wouldn't change anything either.

I simply do not understand this thinking.

The Preemie Experiment said...


I'm so sorry to hear about your father. Cancer sucks-bottom line.

I'd like prematurity to go away too but it simply isn't going anywhere any time soon. But, should we just give up trying? The "cure" is bigger than you (the docs) and I (the loud mouths).

As far as you becoming a GP in Montana... you may want to reconsider after reading the post over at Dr. Rob.

I wish I could take away the guilt of every preemie parent. I am sorry that your friend is feeling it so deeply. It's not worth it or productive. I gave it up a long time ago. Even if we could have prevented it, none of us have the DeLorean to go back in time and fix it. (although I would if I could)

Now the space is filled with the constant wondering if I'm reading her reactions correctly.

Perfect example... Paige was on Omniceff for her millionth sinus infection. She's been on it before and this round she was in day 7 today. She came in my room this morning to tell me that she had a rash. (this is nothing new-the child is one perpetual rash) I was stunned to find her covered head to toe in hives. Ok, just give her Benedryl and stop the Omniceff right? Well, now she is saying that she can't breathe and has a horrible headache. Is it the meds or is she having a panic attack? I'm not going to be the one who takes that chance. Off to the urgent care center we go. She is satting 100%. Must have been a panic attack. Oh well, guess it was worth the extra money.

You wrote: "I worry that it clouds a parent's ability to see their child as an adult some day "

I can see that there are times when preemies may fall under "vulnerable child syndrome" but the majority of the time the parents' fears and reactions are validated. I wish this wasn't the case but it is true.

On a side note... I have learned a lot from reading your blog. I appreciate you giving us parents the time. I also appreciate that you give thought to meds and procedures before experimenting on preemies. I find this encouraging. I'd like to think that all neo's are like you and ND but we all know, all to well, this is not the case.

So, although prematurity is not going away any time soon, neither am I.

I hope to do as much educating as Helen and Chris have done before me (and continue to do so).

Hope we all can accomplish this together.

Ex-Preemie said...

I would.

Having experienced it, I'm a 24-25 week former premature born in 1976, and I do not comprehend why someone would not take away their child's suffering if they could. At the end of things, the one who matters most is the premature, who will have to live with the consequences of others' decisions for their entire lives.

I'm not fine, and not a better person for it. I'll never have an independant life, have chronic pain, neurological problems that prevent full mental functioning, and disabilities. I would not have wanted this, and I don't know why anyone would inflict this on a child or consider it an acceptable risk or outcome. I'm afraid, in pain, and would have chosen the alternative if I had a voice at the time.

terri w/2 said...

Thank you Ex-preemie for your words of wisdom!

We're dealing with a crisis (actually several) right now in our household, and if I could go back and change what had happened 21 years ago, most definitely, I would. Does this stem from GUILT as one MD wrote earlier? No. It comes from constant constant disability issues, suffering and no "real" help and support in this situation.

The suffering - whether it be physical (from massive disability issues as my one twin is now in) or emotional (as my other twin is now in the midst of). .to sit by and see this unfolding and knowing there is no end to any of it. .

Yes, if I could go back and change it, I would. To say that it was all worth it and I wouldn't change a thing - HELL NO. How selfish is it to say I wouldn't change a thing? This is some kind of stupid martrydom syndrome among particularly mothers of children with disabilities who are grasping for ways to cope. .

The difference between someone who suffers with cancer toward the end of their life and families with impaired preemies, is huge. Our children for the most part will never know lives free of pain and live any semblence of normalcy, ever. My parents too, are winding down and have various health issues, but I see this as a normal life event - they lived independent, fulfilled lives. Something I hope to celebrate when their end comes!

Our children will never have that luxury.. .parents and children are sitting in the midst of the chaos and suffering of the remnants of neonatology-induced lives.

Sharee said...

I agree with Lori ... it also relieves the tremendous guilt burden to focus on the positives that come as a result of tragedy (I lost 2 preemies and 1 to stillbirth) but I must say ... sometimes lamenting about alternate outcomes leaves one open to wishful thinking which keeps closure at bay. (So unless I'm holding a genie in a bottle, a wish can't change a thing!)

Despite the blessings that have come as a result of my losses - for me - I'd say a more accurate statement is "I couldn't change a thing."

Anonymous said...

I'd really like to know, statistically and realistically, what happens to adult ex-preemies, specifically micro-preemies,

Ex-Preemie said...


I'd really like to know, statistically and realistically, what happens to adult ex-preemies, specifically micro-preemies, what lives they all end up leading? I'm looking for a small amount of hope, to maybe become the damn miracle they said I was.

The martyrdom factor (which also occurs among preemies themselves), is something I've never been able to adopt, rationally.

Anonymous said...

I'm an ex-preemie (30 weeks) and live a very full life. I am married and have a child of my own. Although my childhood was less than perfect I can not for a moment say that I wish I wasn't alive to experience life and everything it offers.

I spend alot of time talking to people who are disabled from birth (as part of my work) and although they have many down days I have never come across one that wished they were never born.

Perhaps, ex-preemie, you need to look with a different perspective and enjoy the things in life you do have - I know its possible. I work with one woman who will never walk or hold something in her hands - but she is a constant source of happiness because she CHOOSES to enjoy the things she can do.

Its a choice you have to make.

Ex-Preemie said...

Between the pain and the neurological dysfunction, and the knowledge I will likely never be competant enough to live independantly, much less a family and career of my own, I feel castrated. I don't have that fighter's spirit we're all said to possess. Maybe that's what makes the difference. I don't know. Every time I do hear of an ex-preemie who is doing well, I'm happy. I know of someone myself who is doing well.

But the things to be happy about vs the things to be unhappy about is just too wide of a gap.

Anonymous said...

Well, I did want to know about adult preemie outcomes, and recieved a good outcome in reply. :)

Chris and Vic said...

Ex Utero,
I am not Vic's birth mother. So I have NO guilt. But I still feel badly, and I grieve, cyclically.
Vic is also a child who had a DNR, was not on a monitor, and who everyone was willing to let go. And he didn't go--he stayed.
Victor Frankl wrote Man's Search for Meaning r/t the concentration camps---and the stripped-of-everything existence that Jews lived in those camps.
On this blogspot, and on yours, and on neonatal doc's, and on the preemie support lists (Narof, Preemie-Child and Preemie-L), we are searching for meaning, as Frankl did, I believe.
At times, it looks as bleak as the concentration camps. For me, it is not guilt that is so painful. My Vic doesn't and will probably never realize what he is missing, when he lives a dependent life into the future. Maybe I feel it is mine and only mine to grieve for him--since he seems incapable of grieving for himself, now or in the future.
We carry on and live our everyday lives, and some of it is very sweet indeed. The future, however, is a big bad bogeyman. I have no idea whatsoever what Vic will do/be when Bill and I are not caring for him. I am so scared for Vic . . .
Chris and Vic

Helen Harrison said...

To Ex Utero:

You keep trying to reassure us mothers that everything will be better, if only we "have hope" (as you maintain on your blog) or, now, if we give up "guilt."

My first thought on reading your post was:
"I'd like to see you try to tell this to my husband!"

My second thought was: "If only it were that easy!"

I, for one, don't feel guilty about my son's premature birth. I know I did everything within my power to give him the best possible start in life, and I did so from the minute my husband and I began to think of having children.

I do, however, question the wisdom of those who think we can turn what nature intended to be a miscarrige into a healthy, normal child.

I also find a great deal of defensiveness and denial (evolving, in some cases, into feelings of culpability and guilt) among those who have forced extremely compromised lives on other people's children.

I can't tell you how many doctors I've met who describe themselves, apologetically, as "recovering neonatologists."

To Ex-Preemie:

You are not alone in feeling the way you do, though it may seem that way at times.

Preemies or preemie-parents who do not play "the martyr role" seriously challenge the coping mechanisms of neonatologists, of otherbpreemies and their families,and of the general public.

We want to think that all situations, no matter how dire, end happily for everyone.

People don't want to hear honest statements of pain. Such statements elicit desperate attempts to offer up "canned" hope and reassurances.

I, too, feel the impulse to reassure. Although I speak out often against overly optimistic views of premature infant survival, I also find that my first impulse is to tell you that there is *something* that can be done to relieve your pain.

Realistically, I'm not sure what can be offered other than a willingness to listen sympathetically to what you are trying to say. And maybe that's a good beginning...

I have quoted my parents' refrigerator magnet on this and other blogs before.

It stated:
"Since I gave up hope, I feel so much better!"

I know I have personally found that there is something liberating, and even positive, about speaking the truth, even the seemingly unbearable truth.

I hope you will continue to tell us more about your life and situation. I, for one, will be listening.

sce said...

I have plenty of happiness and blessings in my life, but the eight days of medical procedures my preterm daughter endured before she died a tragic and pointless death are not among them. Any attempt to "see the good" in what happened is like trying to dress up a pile of dog shit with flowers. I only consented to the medical care because she was 28 weeks and I thought she had a decent chance. If I had known she was going to die anyway, she would have died in our loving arms without any procedures at all. When people tell me that I need to "learn" from what happened, I tell them I learned a lot of things I didn't want to know, and my daughter was/is a human being and not a Sunday School lesson. She did not exist for my "learning". How self centered it would have been for me to think so.

As far as "choosing" to have a positive attitude, that is very true for me. I CAN and DO choose to enjoy myself and give to others whenever possible. But you know, sometimes the effort is exhausting, and no longer feeling joy spontaneously and having to work to achieve it is just not the same. I choose to live a meaningful life in spite of what happened, not because of it.

We did not "travel to Holland", we were deployed to Iraq.

future of hope said...

Of course, if given 3 wishes by a genie, I would change the circumstances of my childs birth. No one that is even slightly in touch with reality would ever wish for an NICU experience. Of course, if I could,I would do anything to remove his limitations, his frustrations, his hardships. I love my son, he is my heart - I hate ROP, I hate CP, I hate dyslexia, and I am not to fond of ADHD and sensory issues either. I do not feel that any of these things add to him as a person, I am sure he could have been the same wonderful and engaging child without everything that life has given him to endure. With that being said, I feel the need to address the other side of the comment " I wouldn't change a thing." Facts are facts. He was born 13 1/2 weeks too soon. He did have a bilateral III/IV bleed. I did have choices and decisions that I had to make, and I made them. Of those choices and decisions, I wouldn't change a thing. All things considered, my son had a relatively short and uneventful NICU stay. He was then, and is now 10 years later, a remarkably strong and healthy little guy. Yes, he has endured more than any child should have to, and yes, our family has changed in many ways - we are not what we had planned - we are not what we were 'supposed' to be. But we accepted that risk when we planned to become a family in the first place. His issues will follow him into adulthood. He will always be physically dependent on others. So be it. That does not make his life miserable, or unfullfulled, it simply makes him different.

I have used my 'spare'time in the last few weeks and read your blog from the beginning, all posts and comments. I wholeheartedly agree with much of what is being said. Parent's need to be educated and totally informed. Parent's need to be given a voice, and that voice needs to be heard and respected. I do get nervous however, with many of the black and white observations about quality of life. If I have learned anything in the last 10 years, it is that nothing is ever black and white.

Your blog is generating a discussion that is long overdue - Keep writing - we'll all keep reading.

Shannon said...

I just wanted to say something about all of what is being talked about. I am part of the preemie mom group that you have recently joined. My son was born at 24weeks and is now 21months old. He has cerebral palsy, is deaf, feeds by gj tube and has not so great eyesight as well.

I am one of those moms of a special needs child, former micro preemie who says that I wouldn't change a thing about my son. And I am sticking to my words.

Ashton is the happiest baby that I know. I cannot even imagine him being "normal". AND I cannot imagine him being different than he is.

Sure it wasn't nice spending 227days in the NICU and then 27days in the PICU. Sure it wasn't nice to find out that he has cerebral palsy. Same goes for finding out that he is deaf...needs glasses. But that is Ashton. He is who he is.

I honestly and truly feel like I was meant to do what I am doing. I was meant to have a preemie. I was meant to have a child with special needs. Heck, a week before I had him I was telling people that they baby was coming soon. The night before I had him I read a book on preterm labor! When everyone is the NICU used to say that Ashton was going to be okay later on I always knew deep in my heart that he wouldn't be.

Is there something wrong with having a child with special needs?

Anyhow I think I have said enough...I just want you to know that YES there are some moms out there who WOULDN'T change a thing...

Anonymous said...

I'm afraid I can't give up on hope altogether. I have long ago given up on the hope that my son would be "normal". The doctors told us from the beginning that he would be "very retarded", had brain damage, was nearly blind, etc. If I had given up hope on him altogether then he definately wouldn't be feeding himself table food, walking around, or doing many other things that "experts" said he never would do. I have accepted the fact that he will never live an independent life, never communicate like most people, etc...but I hold onto the hope that he will learn how to better communicate with the help of assistive technology, figure out what a toilet is for etc....

On the other side of the coin--the doctors told us "your son is very retarded but that's OK because you still have one healthy baby" (his twin sister). For the longest time I stupidly and naively believed them. I thought she's just a little behind--she'll catch up soon. She is now 7 and is blind in her left eye, has attention problems, acts very immature and has LD. I have finally realized that she will never be "normal"--then again what is normal?
We were never really given a choice when the twins were in the NICU. The doctors told us my son probably wouldn't make it through the night when he was 2 days old (due to a grade 4 IVH). He decided to stick around and that was the end of that.
If I could go back and change history, of course he would not have brain damage--are you kidding?! I would love to be able to hold a decent conversation with him just once or to tell my daughter to go do her homework and she does it right the first time in 15 minutes instead of 2-3 hours. I would love to not have to worry about IEP meetings, lost glasses, appointments galore.

I just recently found your site--it's refreshing not to only read about the "miracle babies" like on some other site (that you wrote about on earlier posts).
Sorry I kept going but I just had to write it somewhere that others might understand.

The Preemie Experiment said...

Shannon wrote: "I am one of those moms of a special needs child, former micro preemie who says that I wouldn't change a thing about my son. And I am sticking to my words."


That's great that you feel that way. No one is trying to say that you should feel otherwise. I have never said that on any group, nor would I.

I, for one, cannot bear the pain I feel at times when my child is in pain. The agony she has experienced, and continues to experience, is overwhelming for all of our family. If I could, I would take away that pain. Her emotional pain is just as bad. Having your child tell you that she would rather be in Heaven is heartbreaking to me. Watching her have tubes shoved in every orifice to determine what is causing GI issues, is horrifying to me.

*I* cannot stand to see my child in pain. If watching your child be in pain is something that you are comfortable with, and would not change, that is wonderful for you.

My original post was not intended to make someone, who wouldn't change a thing, feel defensive. It was soley written because *I* didn't feel that way and was confused with others statements.

Shannon said...

I don't think it is fair for you to say that I am comfortable watching my son be in pain. I never said that. I simply said that I wouldn't change a thing about him. The fact that he has CP, is deaf me I wonder all of the time "why". And you know something, his brain damage didn't HAVE to happen. It was hosptial error.

Having a child tell you that they would rather be in Heaven is another comment that isn't JUST made by former preemies...special needs...there are MANY children who say this who don't have any problems physically/mentally...

How can a mom of a special needs child NOT get defensive when you said you don't understand why special needs parents wouldn't change their children?

terri w/2 said...

Shannon - I wonder if you will feel the same when your son who is 21 months old is 21 years old as my twins are. .

Shannon said...

You know, I didn't comment to start a debate. I just don't think it is fair to say that you would change your child with special needs....makes them seem less important/special because of their issues.

Sure, I believe it is normal to wonder "what if" and other things but at the same time I think acceptance goes a long way...

The Preemie Experiment said...

Shannon wrote: "I just don't think it is fair to say that you would change your child with special needs....makes them seem less important/special because of their issues."

I can assure you, in no way, shape or form, was I implying that my daugther is less important/special because of her issues. No way! I simply want her out of pain (both physical and mental) and cannot understand parents who do not want the same.

I do not judge you, in the slightest. I know where you are in your journey. I've been there myself. I look back at the posts I wrote on preemie-l, when Paige was little, and wish I could go back to being that hopeful mom. I agree with Terri when she said, "I wonder if you will feel the same when your son who is 21 months old is 21 years old as my twins are."

But, please do not judge me, and assume that I feel that my daughter is less special or important, because you feel differently than I do.

I've just spent the last 3 days with my daughter, begging to die, because she has the worst case of hives (allergic reaction to antibiotics needed for her chronic sinus infections that are common in preemies) than anyone around here has ever seen. She is in pain and I can't help her.

Would I change her if I could? You better bet!

To SCE who wrote: "We did not "travel to Holland", we were deployed to Iraq."... AMEN!!

Shannon said...

I really respect you and your writing. I guess I took things the wrong way...I agree with you about wanting to take away their pain, but at the same time kids that are born at term and grow up to be "normal" there are days for them as well...

terri w/2 said...

Oh Shannon, please. ."normal" kids have their days, for sure. But our kids with their disabilities and pain, whether it be emotional or physical - it never goes away, it is wearing on them and on us every single day. Please don't try and be dismissive or belittle this.. .

Roberta said...

I usually do not follow blogs, but your testimonies have hit my deepest cord. I'm one of those neos you so understandably mistrust and resent. Reading your notes makes me cringe. I do know what you are all talking about. I was particularly blessed in being trained and later working in a NICU program with a huge follow up clinic, where neos and psychologist and neurologist and OT/PT and nutritionists and all sorts of subspecialty care were all present. I saw the result of our efforts for years... not always being proud of ourselves. Some babies were indeed held on to beyond what would be humane. Others developed CP after a benign course at 35 weeks. As you say it, a baby doesn't always let go of life even when everybody expects her to. However, I have personally taken babies off their tubes and lines to place them in Mom's arms to finally rest and be allowed to be free. I have tried to discourage parents from asking us to "do everything" for their very preterm infant. And I now work in a group that limits resuscitation rather tightly. All this said, guilt is a prerogative of mothers - once you become one, all that follows is always YOUR fault. Of course there's nothing you did or did not do that really triggered your and your child's life-long condition. Yes, surviving the trial most likely made your family (all in it: parents, other kids, preterm baby, friends and any other one really close and involved) ...a special one, with an exceptional maturity and compassion and perspective. Nonetheless, yes, of course, you know how different a regular term birth, a healthy baby, an "unremarkable" growth and development look like, because you have seen it in the remainder 99% of the kids. My heart goes out to you, and I have the utmost respect for the path you have to walk and the emotions you experience. On a separate note, speaking for the category, please talk to us. Share your opinions, but also trust us. Ask for a solid answer when available, or at least about the NICU experience on the specific issue. By the way, there are lots of studies, by now, about the long term result of preterm birth. Make sure you get all the information that exists. We can actually help you with it. The practitioner in front of you has probably been in this field for a long time, and there are advantages to experience coupled with ongoing education. The real problem with the extreme prematurity is that nobody has yet found a clear indicator of which baby will do well. It's a day by day fight. And we fight for each baby, never really knowing what the future holds for him and her. So, when parents ask for exact percentages of BPD/CP/ this particular gestational age etc, it doesn't really matter. Your baby's condition will be an all-or-nothing experience. The one or many complications she has, it's 100% for you and your family. It will require life-long work and vigilance, and having the right care at hand, and knowing where to find the lung doctor, the allergy specialist, the PT wizard ... who will make your lives more livable. But no parent can ever imagine this long-range view, at the moment the water breaks and a tiny foot pushes out at 25 1/7 wks, and you have to make decisions on the spot that will bind you for life. No parent may ever be prepared for the lights and noises and monitors and all the space age NICU environment. We want to help. We are very aware of your shock, even though we may seem so accustomed to parent after parent and baby after baby. Every new baby we care for comes with a family attached, and we'll want to care for them too, trying not to forget about their needs and their feelings, although we may seem too busy and rushed to let it transpire. Sometimes we do a good job of it, sometimes we don't. Human, yes. Wish to do better, too. We'll all keep working on it, you with us and the babies...