Lately, I've gotten a few emails asking that very question. They coincide with facebook posts to my wall asking, "what happened to TPE?"
First, I need to apologize to those who I have not responded to. I am reading my emails and appreciate every one's concerns. I'm so thankful for everyone who follows this blog and I don't want my absence to convey a different message.
Second, an explanation is warranted. Part of the reason for the lack of posting can be attributed to the fact that homeschooling takes up most of my free time. In the near future I'll be devoting a post on the subject of homeschooling and we can all discuss that further.
Another reason why I haven't been chatty on the blog is due to the stress of our current situation. Both hubby and I have been bit by financial and medical issues that sucked the energy out of me.
But in all honesty, the biggest reason for my absence is the sadness I have been feeling with regard to the world of prematurity. I am an optimist and can be found looking for the bright side or upswing in every situation. I'm always looking for the study or the report that shows promising information in regards to outcomes. They aren't there. This past month, within the preemie community (bloggers and people on the on line support groups) the sadness was overwhelming. We saw the death of older children due to complications from their early birth. Other parents were left wondering how this could happen, thinking that their child was safe once they were out of the NICU. Pregnancies ended early and resulted in parents making decisions to not resuscitate. New preemie parents are joining the groups in record numbers. Parents of toddlers are wondering what they may have done wrong because their child did not catch up by age 2 (like they were told in the NICU). Parents of older children are realizing that their child will not be making the recovery they had held out hope for. Children receiving diagnosis's of CP was more than some parents could handle. Marriages are falling apart due to the stress of having a child with special needs.
Is this past month any different than all of the months in the previous 10 years since Paige was born? No. And that is what has me down. Day after day, month after month, year after year the cycle continues. What has been learned from all of early births? Why are statistics not improving? There are times when it just gets me down.
I will be back soon. I just need time to recover. I started to feel that there was no use to continue this blog. I have changed nothing. (pretty sad that I thought I could actually make a difference when the problem is so huge) Then I realized that there is still so much I have to say. I started this blog because I was outraged at the fact that parents were being told that their preemie would catch up to his/her peers by age 2 or 3. Those of us in the trenches know this is not true and I feel, now more than ever, that something needs to be done about this. There are still parents blaming themselves for the outcome of their preemies. This should enrage you all as it does me.
Thanks again to all of you who have written to me to ask, "Stacy, where are you?" I'll be back soon and with the help of all of you, we will once again bring light to the subject of the long term issues related to prematurity.
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61 comments:
I am soooo glad you decided to keep this blog going. You have helped others. Maybe the rate of problems have not decreased, but I know I have read your blog and gotten a lot out of it. It helps me get a glimpse of what life may be like for us in a few years. As all of our kiddos have frighteningly similar experiences. Thanks and keep it going.
Christy
Stacy-
I SOOO know how you feel. I haven't been writing much about prematurity lately, because I was beginning to feel like I was once again banging my head against a brick wall.
Homeschooling eats up a lot of our time too. Next year we'll have 2 kids in school. Eeek!
I'm looking forward to your return to blogging when you're able. In the meantime, I hope your medical and financial pressures ease off at least a little!
-Kristie
I don't think it is realistic to think that your blog can have a short time (how long has it been going on, 2 year?) affect on morbidity and mortality from preterm births. The thing that can do that is more long term research, followed by slowly changing practices.
But you HAVE increased awareness, on so many preemie issues. You HAVE made so many preemie parents feel less alone. I'll bet you HAVE made some medical professionals think twice before telling people that their kid will catch up by age 2.
Here's what you have done for me, personally. Our premature daughter, born at 28 weeks, died in a cruel accident in the hospital nursery. While the doctors had previously given her a very reasonable chance of survival, they mentioned about a 40-60% chance of a "mild to moderate disability", brushing that off, like it wasn't going to be a big deal. Both in the medical profession, my husband and I were both confident that we could surely easily handle a moderately disabled child.
I have a lot better idea now what that might entail, information I think more people need to understand. Obviously, I still wish I had my daughter, disability or not, but there is no longer a "happily ever after" if only sort of feel.......I wish every neonatologist who tells a family what they told us would read your blog.
Raising awareness is a very good thing......changing practices just take a lot longer.
sce
I am so sorry that you lost your child.
There are people like me, with a caught up, social, typical kid who was a 25 weeker who also represent prematurity.
I would hate for new parents to feel solely the doom and sorrow that this site conveys.
I don't think that your blog conveys "doom and sorrow." I think that it conveys an aspect of truth and reality -- and that is always a good thing (even if it makes some people uncomfortable). You've put a lot of needed and hard to find information in an easy to reach place. And your blog DOES INDEED help preemie parents feel less alone and more supported. I am sure you have helped to reach people in the medical field too. Like someone else said, things there move very slowly. Blaming yourself for that makes about as much sense as blaming yourself for war, hunger, and economic woes! Thanks for all your work Stacy!!!
LT
Ways you've helped me:
1) Support that I wasn't crazy for thinking my daughter wasn't quite normal, despite the pressure from the many doctors in my family telling me otherwise.
2) Knowledge of what to look out for. Claire's little quirks added up to a picture of probable Sensory Processing Disorder, though I wouldn't have realized that without your blog. I got Claire into therapies relatively early, and with good speech, feeding, and sensory therapy from birth to three (when the brain is still very malleable), there's some REALISTIC hope that she'll be functioning close to normal by the time she hits preschool or Kindergarten---when I probably otherwise would've STARTED to notice/accept her challenges.
3) Realistic picture of what challenges the future MIGHT hold. Sure, it might all be sunshine and roses in a few years, but as far as planning how many children I have and how close together, knowledge of what COULD be in our future has helped us to be cautious. And to think seriously about what our personal cut-off date for heroic measures would be if, God forbid, we had another preemie.
4) Access to so much research that has helped me understand what has happened to us.
5) Stories of hope to inspire me.
6) Stories of horror, to make me appreciate what I've got, and to make me work hard on my marriage so that we don't become another preemie marriage casualty.
I'm sure I'm forgetting tons, but I'm heading out the door to a meeting, where I'm a Family Patient Adviser at our hospital--the first for Women's and Children's Services. And later this morning I'll go to the second meeting of our hospitals brand-new Pediatrics Family Advisory Council, where some other preemie moms (at least one of whom also follows this blog) and I are advocating for changes that have long been on this blog community's "wish list" for NICUs.
Thank you, Stacy. You've done wonders for us, and you should feel free to take a break or stop altogether whenever you need to, whether that's today or in 50 years.
We love you.
TPD. I believe that we tend to find what we look for.
I do not often post about the wonderful outcomes of my two premature kiddos - one at 27 weeks one at 32 weeks. Mainly because I do not wish to add to anyone's suffering, but also because the response is "just wait, the horrible things are still to come!"
My 27 weeker is now 7 and completing first grade. I did not disclose his prematurity to the school.
He is a fluent reader, great at math, a friend to everyone, and athletic. He was also given a 60% chance of having a serious disability.
I think the research indicates that the glass is more than half full for extremely premature infants.
Wow. I never have understood why parents of absolutely perfect completely untouched by prematurity preemies parents crawl the internet looking for preemie sites. I would imagine that they would be signing up for scouts, soccer, fundraising for the PTA and in generally leaving the actual parents of preemies alone - but nope ! They feel the need to keep screaming "preemies are just perfect" over and over like a 4 year old with their fingers in their ears.
Strange.
I wish I had that kind of time to crawl the internet looking for someone to bully and insult - but I guess real life just seems more fun and compelling to me.
Interesting that they almost always hide behind anonymity.
this is to anon--
maybe you could be more supportive of this site so that MORE people could have the outcomes that your and your family are enjoying, instead of suggesting that because other people are acknowledging their kids' struggles, and trying to prevent future preemies from suffering they are somehow negative people.
Working to prevent future problems is POSITIVE. Saying "haha, my kid is fine" is NEGATIVE. You are the NEGATIVE person here, not TPE its struggling preemie parent posters.
If your outcome was so great, why aren't you doing everything you can to help others get the same. Or at least just leave alone and not belittle those who are trying to help. You are very selfish.
sce
Anon (5/7/09 10:02 AM):
Based on various message boards that you have read, do you think that you did something special that perhaps other preemie parents/doctors have overlooked that helped your child's health and development? Was your child's NICU advanced on anything (e.g., dimming lights, keeping noise to a minimum)?
Did your child have any negative effects from his prematurity?
I am interested in positive outcomes (as well as negative ones) and trying to figure out what the possible variables are that affect outcomes. Some of the outcomes may be just due to chance, but I think that it is worthwhile exploring "anecdotal evidence" that might inform future studies.
Stacy:
Glad that you'll be back. And I'm sorry that it has been a hard month. There have been several heart-breaking cases on some of the boards that I frequent. Some stories have knocked the wind out of me.
My son just turned 2 years old last week and came down with the flu a couple days ago. Our foster daughter came down with it too, but it didn't knock her down to quite the same extent. I suspect that one big difference is that he is still on the very light side of "normal." So when he stops eating b/c of illness, he doesn't have the fat reserves to sustain him. While I don't want to be "paranoid," it is yet another wake-up call that things are different for him from other kids. His 2 year birthday hasn't marked an end to our needing to be careful. Sigh.
Anyway, keep up the great work! On many occasions, I've appreciated the insights of you, your devoted fans, and even those who disagree with you. You have really done an excellent job fulfilling your mission of generating frank discussions about prematurity. Thank you!
Just out of curiosity, what preemie boards do you frequent? I'm always in search of support and information but have difficulty finding either quite frankly.
In my experience, each board has its own slant (even when there are somewhat different opinions). So I try to keep different ones in the mix.
For dealing with immediate concerns rather than thinking about the long-term effects of prematurity...
http://www.inspire.com/groups/preemie/
For general information (not a message board), I like...
http://prematurity.org/
For specific problems that micropreemies face, there is PreemieBlogMoms group on Yahoo!
When my son was first born, I went to the MOD message board (http://shareyourstory.org/). The turn around time on responses is a bit slower than inspire.com. And, a lot of posters seemed fairly by the book types. For example, one thread was about the possible causes of NEC. I remember a couple posters saying things like "You should just trust the doctors" or "Do whatever the doctors say."
I'm not saying to NOT trust doctors. But, in our experience, the medical community's understanding of and interest in prematurity is pretty darn limited (that's the diplomatic way of putting it). Hopefully, websites like "The Preemie Experiment" will encourage parents to be strong advocates for their kids and push doctors to find answers rather than leaving things at the "he was born prematurely, what did you expect?" level.
Stacy- you have made a difference. You certainly have provided me with a lot of knowledge that I am hoping that I won't need, but given my history, I may. And that is one step on this road because all we have to fight this war is knowledge.
I'm sorry that things have been so challenging for you lately, emotionally and otherwise. Take the time you need to recover and remember that we'll be here to listen when you are ready to return.
And thanks so much for being a friend- it really means a lot to me.
To Anonymous- it's true that you never know when the problems will surface. I am 26 years old and I was a 29 weeker when I was born. My mom never even really acknowledged the fact I was a preemie once I was outside the hospital so I never had any special supports. In fact, I tested gifted on IQ tests and was sent to a special school. It was only as I tried and failed several times to complete university that I realized that I had underlying issues that were causing me to have greater difficulty than the average person. I was diagnosed with nonverbal learning disability as well as ADD inattentive, and there are likely a few more in there that I still don't know about.
Am I a success story? Sure- I can walk and talk, and take care of myself (although I still find full time work difficult). But there will always be factors setting me aside from my peers. My mother still can't accept it. Will you be there for your child if he/she needs it later in life or will you continue insisting that he/she is fine?
Stacy, you have helped so many. I was one of those mom's with a perfect 32 weeker wondering why in the world someone would be depressed or sad at their preemies outcome. They were alive! All preemies were miracles.
Then the problems started. I see a lot of Mom's type about their 24 weekers who came away untouched and my first thought is always "how old are they?" If they are babies/toddlers then they still have no idea what their preemie has in store for them still. They always seem to be babies and toddlers when the mom's post. There are the rare older child stories but my 32 weeker is now 7 and I SEE the affects of prematurity. Sure she looks perfect, she is brilliant and smart... yet she can't button up her own pants. It's a minor thing but it's there. She just doesn't have the fine motor. She wears glasses, pretty sure that's from the prematurity too.
Then I had my 27 weeker, a little 1 pounder. He's 21 months old and only at a 12 month old level gross/fine motor skill wise. He's only at a 6 month old level with his speech. I don't know what the future holds. I don't know what brain damage he might have from his brain bleeds. How his heart will hold up from the damage from pulmonary hypertension. I don't know if he will ever learn how to eat since he's been tube fed since birth. I don't know if he will ever learn to speak since we have no words or even sounds besides grunts. We've been through 6 surgeries and still have at least 3 more to go.
I no longer see preemies as miracles. I look at the torture he went through for 4 months and cringe thinking about it. I can't even walk into his room at night as I did with my other 2 children to watch him sleep as I'm terrified, even now, of seeing him not breathing. Which is a 180 from the times I checked my other 2 children 6 and 7 times a night from worry of them not breathing. Having actually seen my child not breathing, his heart not beating more then once... I take a deep breathe every morning to open his door wondering what I'll find.
Will he have seizures down the road? How will his lungs do as he gets older since he was on an oscillator for 3 months? What did all those medications pumping into his body do to him, what side effects are there further down the road? There's a lot of worry. I am optimistic, he's my little guy. But I am not naive anymore to the statistics. I am not blind to the problems he will face in the future.
I will be there for him always. I will go to his 12 doctors, I will go to therapies for him 3 times a week with 3 different therapists, I will endure every hospital visit and comfort him. But I will not pretend that all with him is okay just because he "looks" okay on the outside. I will not perpetuate the myth that preemies catch up by age 2 and see the disappointment in another Mom's eyes when they don't. I will not tell happy stories of great outcomes when the public all ready has enough of those shoved in their faces. I will try to educate others in the hope that they won't have to endure a painful lesson of their own or be blindsided by eternal optimists.
Your blog has given a voice to many.
Your daughter Paige is an inspiration, despite the prematurity journey, she has come through in life she is loved, wanted, needed and enjoys the biggest blessings in all things she can do that bring her joy and others joy. Her achievements bring more joy, more profound greatness, in all she achieves then a star athlete blessed with a healthy body can gain becuase she has overcome issues despite her early entrance into the world through prematurity, Paige is showing others how to be courageous, battle on, like a true warrior when life is not always simple for everyone even those who's lives do not come with health issues bring with it other daily battles.
Preemie twins Darcy and Hunter born at 22 weeks on you tube survived against the odds, despite health issues they are joyful they laugh they smile they value the joy in simple things like any baby/child enjoys. Little Niamh born at the same hospital as Darcy and Hunter but at 23 weeks, is a baby who defied odds also with no health issues so far, she is joyful, May every mom be blessed with the knowledge they need to help there child, with every moment that brings a preemie prince or princess joy that moment shall also bring his/her parents joy. God Bless every preemie and every parent of a precious preemie prince or princess
Heres a little poem also sung in a song about how special it is to be a mother for every mother who have all conceived and nurtured there own child in there womb. Even if babies are born premature it took moms body to nurture there babies existence long enough for the help of expert medical care to be able to save them along with the gift of moms wonderful love from the start. With baby given the gift of life with moms ongoing love continuing outside the womb.
The Love That I Bear
I sing of the life that I bear
I sing to the one who’s inside of me
Whose face is familiar
Though I’ve never seen
Whose life lies ahead
Like a wonderful dream.
I sing of the love that I bear
I sing to the Spirit indwelling me
Alive deep inside me
As surely, I know
As my baby is living and grows.
Passion and pain
Come together the same
As the flesh and the blood
Come by way of one love
Sing then to life
And of love come alive
So all that is darkness will die.
~Michael Card
When I wrote "I have changed nothing. (pretty sad that I thought I could actually make a difference when the problem is so huge)" it was a failed attempt at being funny. I never started the blog to change the medical world. I knew that this little blog would not change the statistics. (thank goodness I am not pursuing a career in comedy-lol)
But, what I was not prepared for was all of your comments under this post. Your kind words have brought tears to my eyes and given me quite the energy boost. Thank you.
I cannot take sole credit for this blog. So many people have contributed both visibly and behind the scenes. If I tried to list people by name I am afraid I would leave someone out. This blog is truly not a one man show! I am proud of the community we have here.
Thank you to all of you who have commented over the years, sent me research, called me on the phone when you knew I would be affected by comments, chatted with me on Facebook when I needed to vent and sent private emails of support.
And to those who have reached out under this post... you have seriously made my day!
Helen Harrison writes:
Stacy, please keep the blog going! There is so much to do, and I've been handing out the URL to every neonatologist and parent I meet.
I've just returned from the Society for Pediatric Research (SPR) Meeting in Baltimore -- and if I managed to avoid swine flu exposure while there (Purell was being dispensed widely and a few docs even wore masks) -- I will soon post in more detail about some of the research presented.
Suffice it to say the glass is about a quarter full for the "bigger" babies born at 27 weeks. For those born at lower gestations, it gets progressively worse as gestational age at birth drops. And this only covers early developmental problems -- there are many more organ systems at risk in preemies besides their brains.
Several bits of news that were new to me:
Apparently, children <1000 grams who have PDA ligation have a 40-70%risk of permanent vocal cord paralysis as a result.
Also, renal specialists are noting that most of the chronic kidney disease they are now seeing is in preemies.
And, not so surprising, in an ethics presentation, one doctor noted that his hospital would go bankrupt if the NICU lost even a third of its current patient load. To put it bluntly, hospitals in the US have a HUGE financial incentive to push for resuscitation at the lowest gestations.
Alan Jobe, one of the foremost neonatologists and researchers in the world, stated that although neonatology has made some improvements around the upper edges of preterm gestational age, the younger babies are merely participants in a major research effort with highly uncertain results.
Another well-known follow-up doctor commented to me about the bad outcomes reported at the conference: "Well what do people expect? These are preemies! Of course they aren't going to be normal!"
I just wish every parent reading this blog could be with me at these conferences to hear the cynical and alarming information being reported about our children, their neonatal care, and their outcomes.
Please, Stacy, stay strong, and keep blogging. This is important!
Helen
Helen:
I'm surprised to hear that NICUs make money. Do they overcharge for services? Or are they simply making money on quantity?
I live in a border state. I was under the distinct impression that the NICU loses money b/c of taking care of high numbers of uninsured "undocumented" workers. The loss occurs in part b/c the federal govt hasn't given much money to offset the health care provided to undocumented workers by the border states.
But perhaps that's just unique to border states and not typical of the other states.
Also, how intricately are the doctors involved in the finances when making decisions?
Helen Harrison writes:
To Anon:
I would think the profitability varies with the individual hospital, but NICUs are considered "profit centers" throughout the US. Many hospitals, pediatric hospitals in particular, are kept financially afloat by their NICUs. I think private insurance subsidizes a lot and I also believe government reimbursements are substantial.
NICU docs may also profit, directly or indirectly, from the profit on preemies. I am told, by docs who should know, that Neos on salaries often have some extra hospital-based source of income that is linked (sometimes with a wink and a nod) to their ability to generate revenue for the NICU.
Helen
I do feel your pain. But my wife and I had a victory recently. Our first son was born at week 24 at 1lb 8oz. He's doing fabulous! My wife and I just had our second. Boy was it a stressful pregnancy but with a lot of care from doctors and nurses our newest was born at week 37 at 7lbs 9oz.
I'm filled with excitement that our two sons will grow up to be best friends...they're only 13 months apart...gestationally 9.
Keep on blogging I look forward to your posts.
Helen:
I don't know why I'm surprised by your information. It just sickens me to think that doctors would be making decisions based on fees rather than what's best for the child. But I think that some doctors/nurses have a hard time identifying neonates as people rather than objects (not all by any stretch, some).
While I am sympathetic to having market forces drive many aspects of our society, the idea that a doctor would make money almost in a commission type model (to some extent) strikes me as grotesque. There are a few instances on message boards where people described how the doctors would do things contending that neonates can't feel pain. Combined that attitude with doctors making money by keeping numbers high and that's just a recipe for disaster.
Thanks for the information, Helen.
==KK
Helen Harrison writes to KK:
According to the following post written by a NICU nurse, the motivation to resuscitate and treat at all costs may also be motivated by a wish to have "good" survival stats -- of course that also translates into more money for the hospital and for the doc.
Here is what the nurse wrote to me (I originally posted it under the "Octuplets" thread):
"...just got in from working (at S__ hospital), and have made note of yet another of the endless stories...
"Today I was told that one of our former patients had passed away on Thanksgiving at 11 months of age.
'Jennifer' was a 23 week twin born to a woman whose previous 8
children were in foster care due to her low intellectual capacity.
Jennifer's twin died in the delivery room.
"On her first day of life, Jennifer sustained a Grade IV IVH, and shortly thereafter, a bowel perforation. I was covering the unit the day after this and called the attending physician to carve a plan to discuss/pursue withdrawal
of care for this infant. To my tremendous dismay, I was told that 'our statistics do not support that intervention...our survival is not adequate in the VLBW population and withdrawal is not an option for this child.'
"I tinkered with some other avenues, but no medical support.
"In the best of circumstances, Jennifer was going to live her life in foster care. As it turned out, she never got that far. She was transferred to B__ Children's Hospital for 'rehabilitation' at 9 months of age, vent dependent with a tracheostomy and gastrostomy
tube.
"From there, we heard that she was back and forth between
B__ and W__ County Medical Center...not actually sure
in which place she died, but I can guess that it was not with a
familiar pair of arms holding her. I believe that this poor child must have had over 50,000 painful interventions in her short little life - one that was a battle with sepsis, multiple surgeries, NEC, ROP, reflux, IVs, suctioning, endless blood work, central lines - only to succumb a few months later.
"Never mind the pain and suffering...the cost of caring for this child was undoubtedly billed
out at over a million. Certainly, tens of thousands of dollars
exchanged hands at her expense. And sadly, her story -
one of hundreds that I alone have -is unlikely to make an impact or
be exchanged beyond this email.
"Oh...lest we forget...she improved our "survival to discharge statistics" this past year.
"I actually once envisioned a
'20/20' hour long special of this
family, as both Jennifer's mother and her siblings are very fertile, and most of their children are well known to our hospital and multiple social service agencies.
"To some degree, the reproductive freedom of Jennifer's grandmother has cost society multi-millions of dollars, cost many children enormous amounts of suffering, but has largely existed below the radar screen. A TV special could be a big eye opener, I believe."
***
Helen
OMG Helen, that's one of the most horrific stories I've ever heard.
The sad thing is, if that nurse got her wish and got a 20/20 special, I suspect the national conversation would quickly turn to the morality of sterilizing cognitively challenged adults rather than how to PREVENT adding more special needs people to the population by not using heroic measures on preemies who'd possibly be better off passing away.
Did anyone else notice that all of the discussion around "Octomom" was about whether or not her fertility specialist should lose his license, whether the state should have to pay for care and feeding of so many kids, mentions of the fact that several of her older children have special needs, etc. Not once have I heard a journalist question whether or not some of the tiny babies should have been saved or not. That is a NO-GO area, for sure!
Heck, for bringing this up, even here, perhaps I should post anonymously! ;-)
So glad I found you and the links to other preemie blogs. This is all new to me and i am a bit scared. Thanks for the blog!
Helen Harrison to Kathy:
I agree with your concern about the sterilization issue, but think both topics (NICU overtreatment and over-production of children that will go directly to foster care via the NICU) should be addressed.
There are ways, beyond outright sterilization, for encouraging responsible reproduction and discouraging the opposite. And I think a wider societal debate about responsible uses of medicine is way overdue. Addressing both issues may now be inevitable given the crash of the economy.
Helen
I really hope you will keep this going. I just found the preemie-child on-line community, and it is nice to know there are others out there that are going through the same thing. I am raising twin 10 yr old granddaughters born at around 28 weeks. One has CP, but I am just finding out they both have other problems due to being preemies. I need people and sights like you!!
Hunter & Darcy 22 week premature twins. Little Miracles who made it :) Little Heros. Amazing Babies
http://www.youtube.com/watch?v=5q1YVFHIA8E
Niamh's incredible first year!
23 weekers amazing journey, Look at her Today. Shes an inspiration to others!
http://www.onetruemedia.com/shared?p=84a8c492ae437ab5a5e1b7&skin_id=601&utm_source=otm&utm_medium=text_url
Helen:
Please describe these chronic renal problems and age of onset?
Information and knowledge is important. I do believe though, that if we live our lives always looking for signs that our children are "different", we will create that reality. Are there children (pre-term and full term) who face many health challenges (both physical and cognitive) -- yes. But the majority of our children grow up to live happy and productive lives. Not every food dislike is a sensory issue and not every delay is a long-term learning disability. I don't know what the future holds, but I'm not going to live in a state of fear. The stress we feel and generate has a direct impact on our children. Please don't allow your children to grow up fearful of the world and believing that they are forever limited by their premature birth. I'm not saying that you should ignore "red flags" just don't create them....
I couldn't agree more with the previous poster. Of course a significant number of preemies suffer devastating consequences as the result of their early birth. However, a significant percentage of them are thriving and doing well. There is some credence to the notion that these parents aren't posting on websites such as this one. As a mother of four children, two born full-term and two prematurely, my full term children have had their share of issues which have required speech and physical therapy. I suspect the micropreemies wlll need similar intervention at some point. However, I agree with the statement that not every challenge is a major "red flag." I personally know of several school age preemies, 9 years old and up who are doing very well-attend a competitive private school , etc. In fact, one of them, a former 27 weeker, attends the same school as the Obama girls. No easy feat. Awareness, education, and prevention are key but I disagree that it's all gloom and doom. By the way, I'm a parent advisor at one of the largest and most progressive NICUs in the country. Perhaps that's why I'm an optimist. They have some of the best outcomes in the country. Keep blogging Stacy but don't be disheartened.
Helen Harrison to anon 8:39:
[3853.41] High Prevalence of Abnormal Birth History in Children with Chronic Kidney Disease
Larry A. Greenbaum, Frederick J. Kaskel, David Askenazi, Randall Jenkins, Hilary Hotchkiss, Mike Schneider, Susan L. Furth, Bradley Warady. Pediatrics, Emory University and Children's Healthcare of Atlanta, Atlanta, GA; CKiD Investigators.
BACKGROUND: An abnormal birth history, (low birth weight (LBW) <2500 gms; small for gestational age (SGA) <10% BW for GA; prematurity, <36 wks GA) has been associated with an increased risk of hypertension, cardiovascular and chronic kidney disease (CKD).
OBJECTIVE: To determine the prevalence of and risk factors for abnormal birth history in children with chronic kidney disease.
DESIGN/METHODS: We conducted an analysis of the 493 children with CKD enrolled in the Chronic Kidney Disease in Children (CKiD) cohort study, an observational study of patients aged 1-16 years with an eGFR of 30-90 ml/min/1.73m2 to determine the prevalence of an abnormal birth history and its relationship to growth and renal function. Birth history was assessed by parent/guardian questionnaire.
RESULTS: There was a high prevalence of abnormal birth history: 16% were LBW and 19% were premature, compared to a prevalence of 7.9% and 12.3% of LBW and prematurity in the general US population. In addition, 14% were SGA and 39% were in the NICU after delivery (vs. 13% in general US population). Only 48% of the cohort had no history of abnormal birth history (SGA, LBW, prematurity, or NICU after delivery). Abnormal birth history varied based on underlying diagnosis (Table). When compared to the entire cohort, NICU after delivery was more common in children with obstructive uropathy (p<.001) and less common in children with FSGS or immune-mediated disease (p<.001). Prematurity and LBW were more common in children with dysplasia (p<.012) and less common in children with immune-mediated disease (<.017). Children with FSGS had a higher rate of LBW and SGA than the general population.
Diagnosis of CKD and Abnormal Birth History Diagnosis LBW Premature SGA NICU
FSGS 21% 7% 25% 7%
Obst Uropathy 14% 19% 12% 56%
Dysplasia 25% 30% 19% 49%
Reflux 15% 14% 18% 31%
Immune med. 0% 3% 10% 7%
CONCLUSIONS: Abnormal birth history is more prevalent in the CKiD cohort than in healthy children. The high prevalence of LBW and SGA in children with FSGS is an intriguing observation that warrants confirmation and further analysis. Abnormal birth history appears to be a risk factor for CKD and may play an important role in its progression and complications. Longitudinal data collection in the CKiD cohort will provide valuable information on these associations.
E-PAS2009:3853.41
To Anons (May 11, 2009 11:26 AM and May 11, 2009 10:23 AM):
I hear what both of you are saying. It is a fine line between "gloom and doom" and "keeping it real" though, isn't it?
I mean, if one knows that when they bring their child home, there is a stronger likelihood that their child will have an oral aversion (than if born FT), it makes sense to be conservative about parenting, don't you think?
I appreciate the candid talk about what CAN happen so that I will be on guard and get my son early intervention if needed. Perhaps that means I tend to jump the gun, but I figure that's better than letting things slide and potentially missing windows of opportunity to help.
I sincerely believe that it was my pushing the EIP staff, who were dragging their feet on getting my son enrolled, that let us get the OT earlier than the EIP would have done. At that time, he was already 2.5 months adjusted and having some problems with sucking. Not only did the OT's techniques help us get him to take more than 2 ozs in under 30 minutes (b/c he would have otherwise taken an hour) but she guided us through some techniques, which I believe helped sidestep some oral aversions w/ solids. She also caught his torticollis early (which was causing a slight delay on his motor skills).
I believe that it was my reading of the "gloom and doom" studies that made me extra aware of those problems and thus know how to push for early intervention.
BTW, I'm not claiming that EIP can solve all preemie problems by any extent. Just claiming that being extra cautious can pay off sometimes.
Best wishes.
==KK
Helen:
Just curious on the kidney study. Is there a window within which hypertension, cardiovascular, and chronic kidney disease tend to appear if one is a preemie?
Also, is there any suggestion that early use of diuretics is an indicant of chronic kidney disease later? I'm not suggesting that the diuretics are a cause per se. Just wondering if underdeveloped kidneys at birth (which require diuretics) are more inclined not to develop quite right outside of womb.
Best wishes.
==KK
Thank you, Helen.
I also agree with Anons 10:23 and 11:25. I appreciate the information to be found here and the health issues I may have to watch out for, such as the renal issues (none so far), but I cannot dwell on it. I was a 24-25.5 week preemie, with many health problems, but my life doesn't revolve around prematurity. I lurk here, rather than post often, because I'm not comfortable with many of the parents, that they may well not like what I have to say, or even write it off.
I think I was misunderstood. I absolutely believe in early intervention and feel that any good "conservative" parent needs to address red flags and treat accordingly. That said, every red flag doesn't necessarily mean a life long problem or a significant delay. I have been in preemie support groups and heard mothers complain about their 6 year olds being "picky" eaters, for example and automatically assuming it's a preemie thing. Maybe, maybe not. I don't think it's realistic for anyone to expect no repercussions from early interruption of in-utero development. However, there are a lot of normally functioning children who are thriving. A lot of those, I'm assuming had supportive home environments and were fortunate enough to escape severe disabilities. I do agree there is a "fine line"...
MKN
To Anon. 6:25 pm, the former 25 weeker,
To those of us who would appreciate it, could you share some more information about yourself?
Stacy,
I'm glad you're back. I feel like over 2 years of reading this blog, networking, and watching my children grow and develop, I have done just as much growing as they have in terms of understanding and acceptance.
I knew my children wouldn't be "typical" from the moment they were born. OUr NICU was pretty straight up and I'm a realist, so I really didn't believe "God" would magically "heal" my children and have them walk away from a 23 week premature birth unscathed. It makes me angry that some parents aren't told this or don't understand this. But we were told, and so there was already a great amount of acceptance prior to them even coming home from the NICU.
What has helped me come to complete acceptance and peace about S&E has been my interactions and friendships with fellow SpedPac moms (Special Ed Parents Advissory Committee.) This group of moms are as committed and intelligent as the many moms I have met through the virtual world. Stepping out of prematurity and seeing the many other amazing children who struggle with health and developmental needs has opened my eyes to the reality of life in general...there are many other children who have varying disAbilities. There are many other parents who have it so much tougher than we do and there are those who have it somewhat easier. Some parents have children who suffered strokes in utero, have DS, rare genetic disorders, autism, etc. The one thing we have in common is we absolutely 100% love and cherish our children and we do whatever it takes to ensure equaity and inclusion for them. We don't talk about why are children are different, or focus on things that are beyond our control. We can freely discuss the challenges and laugh about how strange our lives are compared to parents with "typical" children, but we aren't angry, we aren't resentful. The support from them and my virtual supportive preemie parent friends have certainly helped me come to a basic understanding. This understanding is that I cannot spend my life wondering "what if." I can't be afraid of the future. I have to be brave, intelligent, and committed to do what it takes to ensure that I do the very best on the behalf of my children.
I literally cannot imagine, nor would I want to, a life without my children. I feel so blessed to have them and I personally am so grateful that I went with my heart and my gut and not my mind. If I'd read all that I've read post-NICU I don't know what decision I would have made and it scares me to think that way.
I have come to accept that other people don't feel the same way. I understand that there are situations that are a lot more challenging than we have it.
I think this blog is valuable because real issues are discussed and people don't have to feel alone when common preemie issues are talked about and shared. I personally have an optimistic outlook on our lives even with the challenges we face. Everyone is entitled to their own feelings related to their families, and I am grateful that Stacy gives everyone a voice...even when we don't always agree.
Helen Harrison writes to KK and Anon 6:25:
I do not know much more about renal problems in preemies than was contained in that abstract.
But there is quite a lot of info on the early development of hypertension -- and other elements of metabolic syndrome -- in preemies.
The studies I've seen have been with adolescents and adults and have found hypertension, insulin resistance and obesity -- on the other hand some preemies never really gain weight, so there is that extreme too.
It all seems to be part of what is called the "fetal origins of adult disease" and much of the SPR conference I recently attended was devoted to this topic. One particularly interesting session explored the connections between fetal/neonatal infection (bacterial and viral) and later psychiatric illness -- everything from bipolar disorder to schizophrenia and autism. It was both fascinating and frightening. I would hate to be pregnant, now, and sick with swine flu or worrying about becoming sick with flu, after hearing what the researchers had to say. Most very low birthweight preemies are born early because of infection/inflammation, so our children are at risk.
Back to metabolic syndrome, I've seen studies showing that bp starts creeping up in childhood in preemies, but may not hit the abnormal range until later. Anecdotally, I've heard of abnormally high blood pressure in some preemie children.
The renal problems have many probable causes, but the one that makes the most sense to me is that preterm birth (permanently, it seems) interrupts normal development of the kidneys with fewer nephrons eventually formed. This is made worse if there has been steroid exposure.
It seems to me that diuretics may also play a role, but I don't know if they do permanent damage. I'll try to look for some studies on this and get back to you.
It's not a topic I'm particularly knowledgeable about, but I need to learn more now that my 33 year old (29 weeker) has developed hypertension and suffered his first heart attack last summer.
Helen
Helen Harrison writes:
I would like to know if any of the readers of this blog are having problems with their preemie children (or with your own health, if you are an adult preemie) regarding hypertension, heart, or kidney issues.
Helen
TPD.
Kate K, my kids were born at different hospitals. My first, at 27 weeks, at Brigham and Women's. My second, at 32 weeks, at a level 3 NICU hospital (in a different state) that felt like a third world country compared to B&W, but luckily she needed very little medical attention.
I felt at B&W they did the absolute best they could to integrate baby-sensitive practices into the NICU care, such as dimming lights, minimizing noise and handling, encouraging parents to be there round the clock and hold the tiniest and sickest of babies, breastfeeding support, attention to nutrition and growth, etc. That said, it was still a horrific environment.
I don't take any credit for the positive outcomes so far, and by no means do I feel that nothing bad will happen in the future. Just the oppposite, in fact, I believe it is just the randomness of life.
I do know, however, that even if a later-appearing problem could be traced with certainty to prematurity, I would take note of it with interest but move on to addressing the problem itself. My kids were born before their due dates. They are who they are at every moment in their lives, because of and in spite of that.
The reason I pop in periodically to this site periodically is to offer thoughts in a different vein...not better, not worse, just different. When I was a new parent scouring the internet for information, I had no trouble finding information about every last disorder or risk or red flag or medical mishap or early intervention. I had a really hard time finding parents of preemies who looked at their kids simply as kids, with strengths, weaknesses, likes, dislikes, and their medical problems simply as medical problems.
Helen thinks I am militantly pro life, and although I never thought of myself in this manner, I suppose when it comes to premature babies it is not altogether wrong. I do have a concern that as parents of "typically developing" kids drop off of "preemie" sites (or are driven off with insults), the things that people are saying and doing to "raise awareness" may unintentionally lead to the discrimination against preemies, both born and unborn.
TPD again.
I also wanted to add that another reason I like to check in is to read comments from former preemies. My kids are only 7 and 5 -- they know how much they weighed at birth and that they were born earlier than most babies -- but it doesn't have meaning to them one way or the other - they just want to hear the "when I was born" stories that make them feel cherished and loved.
I will be aware, however, that over time they may feel the need to connect difficulties with learning, sports, etc., with their prematurity, and I won't dismiss that, or minimize it, if it is something they want to explore.
You are so dead on! As for potential problems, I used to do IQ/learning disability testing for a huge city. I've probably done in the high hundreds or so of kids. There were lots of kids with major ld problems and low IQs, all full term. I do remember a micropreemie (27 weeker) with major learning problems and the parent was a crack addict while pregnant. Some of the things I read here don't gel with the experiences I had of working with needs populations.
Helen Harrison writes to TPD:
I have no idea who you are or what you believe -- the widely varying tone in posts signed by the initials "TPD" sometimes leads me to wonder whether "TPD" is being written by a committee.
To Anonymous 12:39:
Here are the stats on the latest population of micropreemie survivors released by the NICHD Neonatal Research Network.
Serious handicap (as diagnosed at ages 18-22 months)is now at 60% of NICU survivors (limited to mod-severe CP and/or DQ <70). This is for the cohort born in the US in 2002-2004; the serious handicap rate is actually up from 50% in 1999-2001.
The EPICure data gives a scatter plot of school-age IQ for 26 weeks and below; it is not a pretty picture. Only 18% of their national cohort is free of disability by late childhood.
The new EPICure cohort (just entering early childhood) is no better, and, in fact, may be worse.
The odds of having a lot of micropreemies in a single school system in the past has been small. If you were to continue working on the IQ tests, I guarantee, you would be seeing them. And the vast majority are not crack babies.
Helen
It also depends on the NICU. Some have better outcomes than others. My hospital has participated in many of these studies and their individual results frequently don't reflect those of the overall study cohort. I was told this by the one of clinical psychologists who runs a lot of these studies on a national level. Our NICU is currently assessing preemies at 3, 6 and 9 years of age over a span of several years. They're running a micropreemie study based on gestational weight as well one on later preemies-34-36 weekers.
There are so many variables with these groups, it frequently difficult to extrapolate accurate informaiton.
MKN
Helen Harrison writes to MKN:
There are indeed variations in short-term outcomes among NICUs. I've just been asked to become part of a study that looks at these differences nationwide and makes practice recommendations. I look forward to learning, in greater detail, what it is that makes the (short-term) differences.
The short-term outcomes that predict poor long-term outcomes include BPD, NEC and other infections, and ROP.
Beyond that, low gestational age is consistently a predictor of poor outcome -- this is not to say that *every* low gestation baby is severely handicapped -- EPICure which has some long term micropreemie outcomes -- does show 18% are disability free at age 11. But the majority, sadly, are disabled.
Individual units can *temporarily* show amazingly good -- or amazingly depressing -- stats, but that is the result of the low denominator any individual unit has, as well as the losses to follow-up that tend to plague these small studies. The NICHD or the Vermont-Oxford network, and EPICure data are much more indicative of the big picture.
Helen
I am a NICU nurse, and a mom, and I have often felt guilt over caring for preemies who are discharged with bad outcomes. I have been doing this for 16 years, and have seen great improvements, and it is truly disheartening for me to read some of these comments. We rarely have any encounter with our patients again, once they are discharged from the NICU. So, we do not know how they are doing at home. I think this blog is important not only for parents of preemies, but for us in the medical field who work with them. How do parents want us to talk to them? I would sincerely appreciate feedback so I can bring it back to the nurses and docs in the nursery.
Helen Harrison to Reality Rounds:
Telling new parents the truth about prematurity and outcomes will always make "the messenger" into a villain -- at least in the short run. No one wants to hear bad news, especially when there are no options.
That is why I think OB-GYNs should be giving parents the information when they have a chance to act on it.
I also strongly recommend the NICHD data base as a place where parents and practitioners can go for the latest information. It is at www.nichd.nih.gov/neonatalestimates
It allows parents to individualize the data to some extent by entering some important neonatal variables (such as sex, weight, gestational age, antenatal steroids, etc.) and getting an outcome estimate.
At least, this depersonalizes the first hit of bad news.
But it is only the beginning of the discussion.
More to come on this...
Helen
TPD.
Helen Harrison wrote: "That is why I think OB-GYNs should be giving parents the information when they have a chance to act on it."
--heavy sigh--
This is the sad consequence - the ultimate discrimination. No matter that there is no diagnosis, no confirmed genetic anomaly, there is nothing but fear stoked by horribly confounded data and reinforced with every search of the internet.
I will not get sucked into the back and forth this time with Helen (whom I believe is so far down the rabbit hole as to be unreachable). All of my "philosophical" feelings and thoughts in that regard have been fully documented here in the past.
I will, however, as long as Stacy permits it, continue to post my opinions and experiences here, as they relate to specific topics being discussed, with the hope that those who do search the internet for information and support regarding prematurity may find something of use.
Helen Harrison writes:
I have been in correspondence with several neonatologists who tell me that it is precisely *because* micropreemies (by which we mean <26 weeks) have outcomes as poor as infants born with genetic anomalies options should be offered to these parents.
Helen
Anyone happen to see "The Doctors" on May 13th? I was truly amazed at how well they covered the story of the parents of the 28ish weeker who is profoundly devastated and STILL in the hospital after 10 months with a trach as well as most certainly post-intraventricular hydrocephalus, etc etc. I hope that this educated the public as to the other side of prematurity. . the financial devastation, the unrelenting stress, loss of home, capping out of the $5 million family insurance plan.
Interestingly, this show came on the heels of a (sickening) series of news reports from our local station of the NICU in the area. All gush and goo "miracle babies" and such terminology used over and over and over. .24 weeker triplets born around Christmas who apparently are still there were featured - no mention what so ever about the hardships, the potential for disability, the life-long care.
Talk about a polar opposite portrayal of the issue.
And for the poster who said that babies with on-going issues seem to be the ones born to crack-addicted moms - give me a break! If you truly are who you say you are, you would know the issue is so much more complex than this.
Teri, the show, and the parents of the little girl you are talking about, have caused quite the uproar in the preemie on line support community. The family has solicited, accepted, and not reported donations. I'm going to be doing a separate blog post about this in the next few days.
Their little girl died on May 11th.
If everyone could hold off commenting on this for a few days it would save me time in transferring the comments to the new topic.
Helen writes:
"Telling new parents the truth about prematurity and outcomes will always make "the messenger" into a villain -- at least in the short run. No one wants to hear bad news, especially when there are no options."
In my experience this is very untrue. We were told the potentially devastating statistics and we were given options from the very beginning and along every step of the way. From no resuscitation, to DNR, to picking and choising which medical interventions we wanted or didn't want.
We didn't hear every single study I've seen posted here, and like I said in an earlier post, I am glad we didn't. But we did hear the basics, like CP, blindness, learning diabilities, cognitive disabilities, etc
We certainly did not see the NICU nurses or doctors as the "villians." We were grateful for the information. It gave us the ability to talk as a family about potentially raising two children with special needs, made us feel like a part of the decision making process, and made us prepared that "catching up" by age 2 or 3 would probably not apply to our children. (I should mention that our daughter is, at this point, only delayed in gross motor, she has trouble jumping with both feet off the ground, going up and down stairs without holding onto someone hand or the rail, etc.) There is no point in talking about all she can do because it'll be discredited here. And I do concede that a) she is too young to tell..still have to see how she does in school, etc and there are places she is delayed (gross motor and some small areas of fine motor). We are not naive to what could lie ahead, but she certainly does not qualify as disabled, especially not severely disabled.
Our son does have hypotonic CP, is walking with a walker, but is getting a wheelchair that he propells himself for long distances. He is delayed in speech, but his receptive language is quite good. He is considered disabled, and he is a happy, loved, and greatly cherished child who is not suffering in any way.
It's important for parents to hear ALL spins on personal experiences with prematurity. I think that's why TPD, myself, and others continue to post here. It's not to start a war back and forth about who is "right," but rather present a side to prematurity that is not about constant pain, suffering, and devastation.
I am leaving a comment Stacy because I love you and you are truly a source of support to me. I wish we were neighbors. I appreciate your honesty in the blogs that you post. You know how much I love and admire you and Think the world of Paige.
As a mom to a 25 weeker in the VLBW chart, we are not without delays. I love him dearly and do all I can for him. Someday, because of Stacy and her support I know that he will thank me someday. I just hope that other preemie parents are as honest with themselves and needs be. Some can't be. Some will never be able to say this is how it will be, this is the truth of what it is.. Its ok.. They don't have to be. The rest of us dont need to be crucified for doing so.
LOVE YOU AND YOUR BLOG TPE!!
Nancy- My 25 weeker is unscathed. I'm sorry, genuinely, that your experience is different, but I am a preemie parent who is "honest" with myself. We just happened to have a different outcome.
Helen Harrison writes:
Re: 23-wtm who objects to my statement about parents who see the truth-telling staff as villains
I hear this *continually* from neonatologists: "The parents would go berserk if I tell them that" or "I'd be talking to a fist" if I told them the truth.
These are the constant refrains of docs, who, somewhat disingenuously, IMO, want to rationalize why they don't tell parents the truth -- or at least not the whole truth.
My husband and I were also grateful to the docs who told us the truth. But I have been often told (by NICU staff) that my husband and I are not typical -- that most parents freak out.
Having been personally attacked, by new parents, on this blog and elsewhere for telling the truth as it appears in the medical literature, I'm inclined to believe the NICU staffers who say that delivering bad news makes them "villians."
In fact, giving the same information to parents that neonatologists share freely (even derisively) with each other at medical conferences also makes me a villain *among neonatologists.*
Now why would a neo object to my sharing the facts with parents? Any thoughts on this anyone? "TPD"?
Helen
Regarding Helen's comment about neonatalogists being concerned about being seen as "the villains" and patients going "berserk," I can't help but think a large part of the problem is the doctors themselves.
A lot of them are INCREDIBLY sexist in terms of how they see female patients. I can remember several years ago when I was asking some questions after having a gall bladder attack about alternatives remedies to surgery. The resident kept saying phrases like "I know you are scared but..." or "You don't have to be anxious." In point of fact, I was neither scared nor anxious. I'm neither squeamish when it comes to blood nor a wilting violet when it comes to pain (I'm a preemie myself with a high pain threshold). But I don't think that anyone should jump under the knife willy nilly.
Now that I'm a mom, I've heard the "anxious mother" phrase several times when I simply want information and asked direct questions.
In addition to many doctors being sexist and buying into archaic female stereotypes, a disproportion number of doctors strike me as socially inept in comparison to the population as a whole. In short, I don't think that they perceive social circumstances in the way most people would interpret them. And many seem to lack compassion and empathy in their mannerisms. I'm not claiming that this is true of all doctors by any stretch, but it seems to be a recurrent problem in patient care.
For example, when a parent is given the news that their child has a 50-50 chance of surviving, it is normal to shed tears. I think that doctors interpret this very natural and human reaction as "going berserk," which is an idiotic interpretation.
Incidentally, there is social scientific research which suggests that when people are anxious, they often turn into highly efficient processors of information. My point is that shedding some tears isn't incompatible with also processing facts.
The one caveat that I would say about "the berserk" issue is that NICU moms are more likely to suffer from PPD than FT baby moms. In the mother population overall, PPD strikes 20-25%. In the NICU mom population, it is supposedly much higher, but I don't recall seeing an estimate on it (other than studies saying "significantly" higher). I think that there is a reasonable question about whether or not a person suffering intense forms of depression would be able to make the types of decisions that she would have made but for the depression. And how can one reasonably identify the PPD mom from the non-PPD mom during those first few intense months in the NICU when even a non-PPD is going to cry a lot? I personally think the Edinburgh test doesn't work that well for people who have just delivered a preemie unexpectedly. If a doctor thinks that a woman is experiencing PPD, should s/he limit the information given or how s/he phrase crappy news?
I would think that doctors are professional obligated to give their patients caregivers a lot of information, especially if requested. I worry to some extent, however, about how people interpret "significance" and how people interpret odds. I teach statistics, and most people really don't understand odds. For that matter, a lot of people don't understand "significance." When preemie articles say that preemies did "significantly worse" than full-term babies on X, they often mean a statistically significant difference which may or may not translate into a reasonable probability for a given child getting that condition.
==KK
I was on bed rest in the hospital with an incompetent cervix. My first meeting with the neonatologist is when she told me what we were looking at if he came early. As she told me the devastating news, I cried one of the hardest cries I ever had. She then held my hand and cried with me. He ended up being born at 24 weeks and 6 days. I found the nurses very cold the first couple of weeks and not wanting to answer my questions. I later discovered because I became friends with these same nurses after a long 3 month NICU stay that they distance themselves from new babies. They say it’s emotionally draining to connect themselves to babies that may not make it. And that a lot of parents don’t ask questions and just leave it up to the doctor. Now I think my hospital NICU staff have a realistic view of prematurity and the outcomes because every year there is a NICU reunion. The children that attend have a wide spectrum of disabilities. The one thing that these kids have in common and you can definitely see at the reunion is how much these kids are loved.
-Tammy (New Orleans Area)
TPD.
What KK said.
In addition, you are saying that there is some "truth" that you are in possession of. I would speculate that many neonatologists would find that as presumptuous (and perhaps deluded) as I do. Perhaps they are also misogynistic as KK suggests and at some level believe they do have a greater grasp on the "truth" than the irrational mother, but most of them are probably self-aware enough to know that expressing that belief is socially unacceptable (at best - at worst it exposes a real mental defect) and will destroy, not enhance, their credibility.
There is nothing wrong with providing a list of studies or resources (I think there should be some agreement amongst the neonatologists as to what information is "endorsed" by their practice), or even having a discussion of "what does this mean for my child?" (the honest answer would be no one knows for sure).
Above all, there has to be compassion--not speculation, not an agenda, not condescension.
I haven't been by recently but I am so sad. Your blog has changed me, and I am sure many other readers. You ARE making a difference.
I am the mother of a 25 week girl born April 3, 2009. I read your blog all the time and love it! She has had more than 40 blood and platelet transfusions, sepsis 3 times, ecoli 4 times, candida, grade 3 and 4 ivh with pvl, nec which took 26cm of her small intestine, and medical nec again that still isnt healed, has been on tpn and lipids since day 1 and is unable to tolerate any feeds whatsoever. She is the most adorable little fighter but has soo much to overcome. They are consulting surgeons again. We honestly tried to stop all treatment after the first nec surgery and ivh's and were told we were not permitted to make that decision since his heart and lungs were good. That was April 20. Now she is facing the loss of more or all of her intestines and is in constant pain. She also has been back on the vent since the second nec and now has bpd and chronic lung disease which she did not have before. I never knew this world existed and it's hell!
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