Friday, May 2, 2008

The Purpose of My Blog...

Over the last several months my blog changed. As soon as there were discussions about limiting resuscitation based on gestational age, people became stuck. It didn't matter that we all have something in common. That one topic ruined the focus of the blog. People on each side of the argument held their position and carried it through to future discussions. I started to feel as though I couldn't talk about the difficult aspects of prematurity because people would just revert back to my feelings on comfort care. I also felt that I couldn't talk about the positives in Paige life because some people took my comments the wrong way. Although I feel that the topic of resuscitation is an important one, it is not the focus of my blog.

I originally started my blog because I felt that the publics perception (both the general public and those in the medical field) regarding the long term impacts of prematurity was so far off from reality that it was damaging.

For years preemie parents, upon discharge from the NICU, have been told that their baby will be fine and will catch up to their peers by age 2 or 3. For most, this is not the truth. Besides the research, and having a preemie of my own, I have been a part of support groups for 9 years and have listened to countless parents ask, "why hasn't my baby caught up?". They have real concerns that are not being addressed by doctors and their family members begin to think they are neurotic. Over time relationships suffer, marriages end and the child eventually gets diagnosed with something that validates the parents original concerns.

There is a disconnect between the perception of life as a preemie and the reality.

Why?

It is simple. How many preemie stories have you heard of, in the mainstream media, where the parents of an older preemie are explaining what life is really like for their child? I'd be willing to guess that you haven't heard many.

This needs to change.

False perception is damaging.

Below you will find a media release about an interesting survey, that fits in with the focus of my blog, taken (with permission) from http://prematurityprevention.org/.

For immediate release


Contacts:

Jennifer Montgomery, (502) 418-6819; Jennifer@m2-maximummedia.com

Ali Shaw, (502) 262-8580; ali@m2-maximummedia.com


APPROXIMATELY 62% OF PREGNANT WOMEN SURVEYED IN SELECTED AREAS OF KENTUCKY DO NOT VIEW PRETERM BIRTH AS A PROBLEM


Findings in Contrast to Growing Crisis of Preterm Birth


FRANKFORT, KY, APRIL 22, 2008 — A survey among pregnant women receiving prenatal care in Ashland, Lexington, Louisville, Madisonville, Paducah and Somerset finds that approximately 62 percent felt that preterm birth was not a serious problem or indicated that they weren’t sure. The finding stands in sharp contrast to the fact that preterm birth is the number one cause of newborn death, and a leading cause of serious, lifelong disabilities.

The survey was conducted by Healthy Babies Are Worth the WaitR (HBWW), a three-year initiative and partnership of the March of Dimes, Johnson & Johnson Pediatric Institute, and the Kentucky Department for Public Health, aimed at reducing the rate of preterm birth in selected areas of Kentucky.

We’re quite disconcerted by this finding, especially since preterm babies, even those born just a few weeks early, have more complications, such as problems with breathing, feeding, and their neurological systems,” said Ruth Ann Shepherd, M.D., FAAP, director, Adult & Child Health Improvement, Kentucky Department for Public Health.

This survey finding also stands in contrast to the results from a 2006 March of Dimes national survey in which only 11 percent of women felt that preterm birth was not a serious problem or were unsure.1

The preterm birth rate in Kentucky is 14 percent, compared to the national rate of 12.7 percent. Between 1994 and 2004, the rate of infants born preterm in Kentucky increased more than 24 percent. Nationwide, the preterm birth rate has increased more than 30 percent since 1981.

In addition, 34 percent of women surveyed in these six selected areas of Kentucky smoked during the month before becoming pregnant, which is much more than the rate of smoking among childbearing-aged women in the US (20.6 percent).2

During pregnancy, approximately 22 percent of women surveyed in the six selected areas of Kentucky smoked, which is about twice the rate reported for the US as a whole.3 Pregnant smokers reported smoking anywhere from less than 1 cigarette per day to 2 packs per day. This represents a quit rate from preconception to pregnancy of about 35 percent, which is much lower than the average quit rate during pregnancy in the US of 46 percent.4 Less than 38 percent of the pregnant women reported that their health care provider had spoken to them about the importance of avoiding smoking during pregnancy. Smoking is a major risk factor for preterm birth, low birth weight, birth defects, and many other adverse health outcomes.

The purpose of the survey was to obtain up-to-date information on the knowledge, attitudes, and reported behaviors of pregnant women. The information will be used to: provide data about the needs of each of the communities to guide the HBWW Initiative, especially in the development of educational and media materials; and to help assess the impact of HBWW through a comparison of results before the initiative began and after it ends (the same survey will be repeated in 2009).

Healthy Babies Are Worth the Wait R is helping Kentucky’s babies get the best possible start in life. Working with health care providers and community partners, the initiative helps moms-to-be get the care and information they need to increase the chance of having healthy, full-term pregnancies. It brings together the most current approaches for preventing preterm birth, as no single intervention is adequate to address the complex causes of this serious problem.

The goal is to reduce the rate of preventable preterm birth by 15 percent in the intervention areas. If successful, the interventions and lessons learned could make a difference if applied to other regions of the country with high rates of preterm birth. The initiatives website, prematurityprevention.org, has sections filled with up-to-date information for pregnant women, those planning to become pregnant, health care professionals, and the general public.

For more information about Healthy Babies Are Worth the WaitR, log on to prematurityprevention.org.


About the March of Dimes

The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com, marchofdimesbaby.org or nacersano.org.


About the Johnson & Johnson Pediatric Institute, L.L.C

The Johnson & Johnson Pediatric Institute, L.L.C. (JJPI) is an education-based entity within Johnson & Johnson Corporate Contributions, which has a mission to make life-changing, long-term differences in human health by targeting the world's major health-related issues. Johnson & Johnson fulfills this mission, and other philanthropic efforts, through community-based partnerships. Healthy Babies Are Worth the Wait is among programs Johnson & Johnson supports that focus on a key strategy of saving and improving the lives of women and children. For more information please visit www.jnj.com. Educational materials for use by physicians or parents are available at www.jjpi.com.


About the Kentucky Department for Public Health

The Department for Public Health (DPH) is a part of the Cabinet for Health and Family Services. Through its expansive services, DPH reaches thousands of Kentuckians each year by developing and operating all public health programs and activities for the citizens of Kentucky. These health service programs are aimed at prevention, detection, care and treatment of physical disabilities, illness and disease. More information about DPH can be found at chfs.ky.gov/dph.


-END-

1 March of Dimes. (2006). National Brand Study. White Plains, NY: Author. Childbearing age is defined as 18-44.

2 Peristats, March of Dimes. (2007). http://www.peristats.com

3 CDC. (2004). Smoking during pregnancy. Morbidity and Mortality Weekly Reports, 53, 911-915.

4 Coleman, GJ & Joyce, T. (2003) Trends in smoking before, during, and after pregnancy in ten states. American Journal of Preventive Medicine, 24, 29-35.

68 comments:

Sheila said...

Stacy,

The disconnect that exists between parents-to-be and the actual world of prematurity has not changed in the 18 years I've been a part of it. There are many reasons for this, some of which can be charged to human nature ... we don't think about starvation if we have pb&j in our kitchens ... but also can be attributed to the greatly slanted media version of prematurity. We should be challenging any MD who goes on the national nightly news with a comment about a media preemie story the "chances are excellent that these sextuplets born at 25 weeks will have a normal life" to demonstrate ANY source for those statements... our journalists should be INVESTIGATING not simply being conduit for an egomanic MD looking for his 15 minutes.

It is MORE disturbing when "programs" like Healthy Babies are Worth the Wait, publish "PSA's like this crap that focus on maternal smoking rates ... as IF that had ANYTHING to do with why the preterm birth rate in the US has risen 30 percent since 1981.... when they KNOW the reasons to be advanced maternal age, fertility treatments and HOM. Yet we let them get away with this. I don't know why.

Sheila

The Preemie Experiment said...

Sheila wrote: "but also can be attributed to the greatly slanted media version of prematurity. We should be challenging any MD who goes on the national nightly news with a comment about a media preemie story the "chances are excellent that these sextuplets born at 25 weeks will have a normal life" to demonstrate ANY source for those statements... our journalists should be INVESTIGATING not simply being conduit for an egomanic MD looking for his 15 minutes."

I couldn't agree more Sheila! I have written so many letters to various media, and doctors, that I now have form letters that I can pick and choose from, depending on the source.

Sheila also wrote: "It is MORE disturbing when "programs" like Healthy Babies are Worth the Wait, publish "PSA's like this crap that focus on maternal smoking rates ... as IF that had ANYTHING to do with why the preterm birth rate in the US has risen 30 percent since 1981.... when they KNOW the reasons to be advanced maternal age, fertility treatments and HOM. Yet we let them get away with this. I don't know why."

Again, I completely agree with you!! And, I don't think we should let them get away with it. I used their survey to prove a point (public perception). But, that doesn't mean that I am 100% happy with the message that all 3 of those organizations are putting out.

My concern with those organizations is that they are afraid of alienating the very people who are out there raising money for them.

On a side note, the state in which the survey was done (Kentucky) has a higher than average rate of prematurity. (1 in 7 babies) The state is also known for its tobacco usage.

annaliese said...

I think it is true that most preemies DO catch up by age two or three because the majority of preemies are born in the 32-37 week window, but doctors throw that blanket assumption on smaller, earlier preemies, and that just isn't accurate-- they're basically expecting preemies like your son and preemies like your daughter to show the same rate of development when they say that, which, of course, is whack. ;-)

Obviously, I believe that encouraging healthy eating, non-smoking, and prenatal care is important in fostering maternal and child health, but I definitely agree that prematurity is caused by so much more than that-- many times a mother, pregnant with just one baby, delivers at 24 or 25 weeks without any kind of explanation whatsoever; multiples have increased the prematurity rate, but the majority of preemies are singletons, and many times the cause of their prematurity or what spurred their prematurity (PPROM, early contractions, an incompetent cervix) is unknown...it's frustrating. :-(

I also agree that the media plays a HUGE role in skewing an accurate public perception of prematurity and the true effects it has upon children-- they feed on the miracle stories (I was outraged when one of the news stations avered that baby Amelia, the 22 weeker, would certainly be "normal" when she grew up-- she was 4 'feckin months old at the time!) because news like that sells, so that people uneducated about prematurity believe the 24 weeker without any ongoing issues is a "typical" preemie.

Sigh.

Joan said...

annaliese said

I think it is true that most preemies DO catch up by age two or three because the majority of preemies are born in the 32-37 week window,

Annaliese, although there will likely be more than one reply to your statement, it is actually false - another public misperception? Age 2 to 3 may be the time differences may start to be noticed - if not by then, when the children hit school and their differences from their peers, their struggles and challenges become more obvious. Each period of maturational change and growth is a critical period for this population - their underlying issues may render them inadequate to cope with the maturational demands.

There is reams of medical research documenting the neurological and medical issues facing this 32-37 week gestation population.

Joan

23wktwinsmommy said...

Stacy, thank you for reiterating the purpose of your blog, which I completely admire. I feel like I get sucked into the resuscitation/how we view the disabled far too often and I admittedly feel "stuck."


But this topic is something we should certainly focus on.
I became a volunteer with the MOD as soon as S&E were home from the hospital. A couple months later I was invited to a "Prematurity Summit." I was excited; until I read the brochure outlining what topics speakers would be touching on. Dental care, smoking, obesity, drug/alcohol abuse, domestic violence, and overall prenatal care. I was like...are you serious? THIS is what I am going to spend an entire day listening to? Certainly these are important topics and there are far too many women who do not have the knowledge or resources to ensure they do the "right" things while pregnant...but I did everything I was suppose to and so did every other preemie parent I knew.
Where were the topics on infection in pregnancy and what we can do about it? Where were the discussions about long term outcomes for micropreemies and resources for their families?

Needless to say I didn't attend. But I did write an email to our state's MOD director. He admittedly said the focus would be on the basics of prenatal care and many OB representatives, especially from low-income clinics, would be in attendance and would share this info with their clinics and ultimately to their pregnant patients. This was the sole Prematurity Summit of the year.
This type of information is needed, and I certainly believe that ALL babies should get a healthy start, but I am really invested in funding research that will help figure out why women like me and others delivered early (infection, twin pregnancy?) and what we can do about it in the future. I want to learn what I can do as a parent of children born extremely premature in terms of schooling, therapy, securing medical insurance beyond our family plan, etc etc.
Where are these summits? I have seen more ad campaigns by the MOD stating that a vast majority of preterm delivery is due to causes unknown, (not blaming it on smoking thank goodness), but the message isn't completely out there. And neither is the information on what our preemies are up against once they leave the NICU.
Sooo many people tell me how great S&E are doing and how they'll "be fine." They really have no clue the realities of extreme prematurity.

This all became reality when I had my frank discussion with the NICU follow-up clinic recently. I addressed my concerns about my children specifically and also about the lack of follow-up they'd be receiving. That after 3 they would become the school's responsibility. In the letter they wrote "it is refreshing to work with a parent who is familiar with the effects of prematurity."
Well that only came with a personal drive to confront the facts. It wasn't like I was getting much help from the pedi, the neuro, or from NICU follow-up frankly. Everyone wanted to tell me how great the kids were looking. Me to neuro: "I'm really surprised you're not seeing any signs of CP with either." Neuro to me: "Why not, neither had a large IVH or seizures." I had read far too many personal stories to know this didn't clear S&E. Developmental specialists in the NICU follow-up: "the best 23 week twins" they'd seen. But thanks to this blog, and other online supports, I knew not to exhale. I know they are doing amazing, but I know there is a lot we have to face. And I know as an informed parent, who has come to accept that life will not be typical, it will only help me do what I need to do for them.
But what about the parents who don't familiarize themselves with the realities? I have received so many emails from other parents of 23 weekers (they've seen my videos on You Tube) and they have no idea what to expect long term. Are they not being told? Or not willing to hear? I've found it's a mixture and it puts me in an uncomfortable position. I knew right away there was an extreme likelihood I'd be parenting 2 children with special needs should they survive. I knew via nurses and neos in the NICU and from online searching. I also knew there were various "outcomes." But some of the parents don't seem to know, and a couple have been talking about "God" so much they think the neos are lying and it's in God's hands, and their children will be healed. I don't know how to appropriately respond to these parents even though I want to help them.

But these issues and others should be addressed...there should be changes. With prematurity on the rise, I'd like to see all areas change...the media, the MOD, follow-up, school system, primary care physicians are just a few.
I'd also like to establish a local extreme prematurity support group for parents, where we could talk about our experiences and concerns.
Where we could learn from each other so that we can be the best advocates for our kids.

So thank you Stacy for this blog, and for bringing the focus to the realities. Thank you to the parents who blog about their preemies. Thank you for being a source of information and support when in the "real world" I have not found it.

Carrie said...

Do you think that MOD focuses on things like smoking, drinking, obesity, etc because those are known to reduce the risk of prematurity backed up with years of research?
I clearly remember being on bedrest knowing that my baby would be born early (the best I could hope for was 32 weeks) and watching a PSA about not smoking, taking prenatals, etc and you'll have a full-term healthy baby. I just started crying and thought - Okay I did all that. Why am I having a preemie?
At lunch the other day we were talking about all the "bad" news that is presented in the media. Someone asked if the economy would be in such a bad place if the media wasn't constantly telling us how awful everything is. We all sort of agreed that there must be something that humans are drawn to when it comes bad news. So, if that is true, why does media focus on only the "miracle," happy, everything is roses stories of preemies?
Stacy, I really enjoy reading this blog. I admire you. I hope people honor your purpose.
Carrie

Kathy said...

This post is well-timed. I know it's not about the MOD, per se, but our local Walk for Babies is tomorrow morning, and we still haven't decided if we're going to participate.

As a preemie parent, I feel like the MOD SHOULD be our favorite charity, but I just have so many mixed feelings.

Now, show me a group working towards making a thrombophilia panel part of the automatic prenatal care for any pregnant woman with extreme morning sickness or even a small-ish fetus, and I'll donate every penny I can.

terri w/2 said...

Not a MOD fan either for all of the very eloquent reasons listed by the previous posters. I believe that they are sitting squarely on both sides of the fence - on one hand, they tell everyone that they want to prevent prematurity - want healthy babies, blah, blah, blah. .and then on the other hand, anytime you ever see a MOD poster child, or interview with a parent, it's most likely going to be a normal preterm survivor, or at least normal at the moment. So which message do they want people to hear? Is prematurity good or bad? Talk about a mixed message!

I think it's time to hold the MOD's feet to the fire.

annaliese said...

Joan, according to the National Vital Statistics, a whopping 71.2% of "preemies" are 34-36 weekers, and to the best of my knowledge, barring extenuating circumstances like birth trauma, those children almost always catch up by age two (Hell, my friend's 35 weeker never even had to play catch up because she was a take-home baby), and have no long term problems related to prematurity. If you have a resource about 34-36 weekers that proves me wrong, I would absolutely love to see it-- I am always open to learning and acquiring new knowledge. ;-)

I was expressing that it is unfair for doctors to group smaller preemies, like Paige, with the majority of preemies, who were born much later than she was, and expect all preemies, no matter how early or small, to shove all preemies under one blanket when 25 weekers and 35 weekers are SO different.

I'm not really sure how I feel about the MOD....

Anonymous said...

I would propose topics like these for a Prematurity Summit:

feeding and growing (or not)--new growth charts for ex-preemies

developmental milestones hit or missed

subtle first signs of CP

vision--ROP, Stratbismus and Amblyopia

hearing and the ex-preemie

brain bleeds and cysts--what to expect in the future

Soft sequellae vs. the biggies: CP, cognitive disability, autism, blindness

How soft disabilities may add up

Reactive Airway Disease (RAD) and asthma in ex-preemies

at risk for RSV?

Severe bleeds and hydrocephalus

Clumsy child syndrome--balance issues with the ex-preemie

Large and small motor deficits

Speech and feeding difficulties may go hand-in-hand

Learning disabilities later on--
ADD/ADHD/ NLVD, auditory processing, autism in the classroom, speech therapy

Day care and respite care for the ex-preemie--or not

Stresses to be borne by the family of an ex-preemie

Medical home, specialists, medical advocacy

Early intervention--how helpful?

School advocacy, the IFSP, IEP and 504 plans

Cost of medical care, adequacy of insurance, bankruptcy

Pain in the NICU and afterwards

Mental health issues for an ex-preemie

Etc.

Chris and Vic

Sheila Brown said...

annaliese wrote:
a whopping 71.2% of "preemies" are 34-36 weekers, and to the best of my knowledge, barring extenuating circumstances like birth trauma, those children almost always catch up by age two


Not saying there is any way to directly compare 25 weekers to 35 weekers - cohorts too dissimilar ... however, MOST long term studies of prematurely born infants show deficits and morbidity in all gestational categories. Anecdotally, using only the small 5000 members of preemie-list, I would say that less than 10 percent of all preemies (including those so called 'late gestation' preemies) are "caught up" by age 3 ... and frankly I don't even know what that means ... They didn't miss a train, they missed brain development. Unfortunately, that isn't something that can be "caught up" to with our present technology / knowledge. While they may "look on the surface* a bit more like their FT peers than micro's - don't scratch that surface, because "preemie" oozes out all over.

Sheila

Anonymous said...

Helen Harrison to Sheila,

I'm not sure exactly how 34-36 weekers "catch-up" (or not) at age two, but, by fifth grade, at least 1/3 of them are struggling in school vis-a vis their full term classmates as evidenced by IEPs and special ed placement and teacher concerns.

Overall, 78% of preemies at or below 36 weeks are "delayed" at age two.

The Preemie Experiment said...

As far as our experience with catch up in late gestation babies... Tyler was born at 35.4 weeks. Not only did he have worse reflux/vomiting than Paige ever had, he just turned 2 and is still speech delayed. He's getting there, but delayed nonetheless. Since he's only 2, we'll have to wait to see if there are any other future delays.

The Preemie Experiment said...

My opinion on MOD...

Paige was an ambassador (local) child a few years ago. As much as I wanted to step up on my soapbox and start talking about the real long term impacts of prematurity, I didn't feel that there was ever an appropriate venue. Every event was a celebration.

Do I think that MOD has a place in the world of prematurity... yes. I feel that they have brought the topic of prematurity more into the public eye than ever before.

But, the message is wrong. I think their own study proves it. Here we have had about 6 years of them taking on the campaign and still more than the majority of women think prematurity is not serious.

I wish they would encourage REAL discussions from parents. It's not the parents fault either, the right venue needs to be in place.

The Preemie Experiment said...

23wktwinsmommy wrote: "I knew via nurses and neos in the NICU and from online searching. I also knew there were various "outcomes." But some of the parents don't seem to know, and a couple have been talking about "God" so much they think the neos are lying and it's in God's hands, and their children will be healed. I don't know how to appropriately respond to these parents even though I want to help them."

Stephanie,

Welcome to my world now. This is why I started the blog. There was no REAL discussions out there. The misconceptions are scary, aren't they? I always found it harder to respond to one person, via email. It was easier to blog about it and have others comment. This way more than just my thoughts are being shared.

terri w/2 said...

PE, you are correct the MOD message is wrong. They are STILL stuck on the "campaign of blame" - that preemies are the result of the mother's poor health choices. After ALL of these years, numerous studies, fertility drugs causing increased multiples, etc etc.

If you would Google or do a search on "premature babies" - many many articles pop up on the events of the March of Dimes. There sure aren't many that have kids with issues - they like to say the opposite - that neonatology stepped in and saved this baby and ain't it a miracle.

So. .why would these women surveyed in Kentucky think that prematurity even WAS a problem? Who is telling them it's a problem? Not the MOD, not the media, not neonatologists who save babies less than a pound or at 22 weeks looking for their 15 minutes of fame. .WHAT and WHO is out there telling mainstream America that prematurity is the number one cause of death AND disability? No one. Why is that?

Answer: $$

The Preemie Experiment said...

More thoughts on MOD...

After reading every ones comments, I think the theme is that we are looking for support after the NICU. MOD raises money to fund research but the survivors are left in the dust.

I wonder how another organization could step up and offer support?

A few posts ago I blogged about an organization that raised money to help the survivors of cancer. I spent quite a bit of time researching the organization since I was putting it up on my blog. Reading about them left an impact on my life.

We, as preemie parents, need an organization that both raises awareness AND money to help the survivors and their families.

The costs associated with the care of a preemie is outrageous.

At one time Paige had 9 different specialists that she saw on a regular basis. At $30 each copay, there were months that copays alone meant that we couldn't pay other bills. Then there is the cost of medicine, orthotics, dental bills, gas, special food, medical tests, blah, blah, blah.

I have been spending some energy on trying to figure out how to start an organization of this type. But I wonder how many people would donate knowing that the money is only a temporary fix for a family?

Do I think MOD has a place in prematurity... yes. They are about research and PSA's (albeit misguided and quick to blame the mother).

But, survivors need help too. I'm going to keep working on it. If anyone has any ideas, please email me.

The Preemie Experiment said...

Chris,

As always, excellent comment. Your list is incredible! I sure hope that we can get a preemie summit going. We sure have enough people who could speak on those topics!

Thank you!!

Stacy

The Preemie Experiment said...

23wktwinsmommy wrote: (talking about a preemie summit) "Where were the topics on infection in pregnancy and what we can do about it? Where were the discussions about long term outcomes for micropreemies and resources for their families?"

When I was pregnant with Tyler I attended a preemie summit in Chicago. I went with a few parents of older preemies, one of which was also speaking.

Parents were not allowed in all of the seminars but I was thrilled when a few of us were told we could sit in on a lunch time seminar to hear Dr. Maureen Hack. Her research had just been released, showing that babies born premature were clearly not catching up by age 2, and it was getting a lot of press.

During her presentation some of the docs in the room talked to each other, instead of listening. It was the rudest behavior I had ever seen. They were rolling their eyes and snickering. Dishes were clanking as the waitstaff delivered food. I felt like standing up and screaming "shut up".

After she was finished it was announced that she would answer questions. The silence was deafening. I stood up and thanked her for her research. I explained that, as preemie parents, we are faced with the outcomes and constantly being told that our kids will catch up. I could feel the stares burning a hole in my head. hehe

As much as I would love to see a balanced summit, docs wouldn't go. There is a division between what parents need and what docs want to hear.

A dream of mine would be to have a group discussion in which docs would be able to ask parents (not newly released from the NICU) questions and we would be able to do the same. A true learning experience.

The Preemie Experiment said...

Terriw/2 wrote: "So. .why would these women surveyed in Kentucky think that prematurity even WAS a problem? Who is telling them it's a problem? Not the MOD, not the media, not neonatologists who save babies less than a pound or at 22 weeks looking for their 15 minutes of fame. .WHAT and WHO is out there telling mainstream America that prematurity is the number one cause of death AND disability? No one."

Exactly Terri! That is why I started this blog. I realize that it's not enough but I sure am trying!

23wktwinsmommy said...

Yes Stacy, and this is why I find your blog so helpful and it is a great addition to the helpful personal stories I find in preemie mom bloggers.
I usually have to 'feel a person out' before I recommend this blog...especially if their child/ren is still in the NICU. Just recently a mom of 1 month old 23 week b/g twins emailed me. She was very religious from what I could tell. She asked about S&E. I told her the NICU was a scary time but nothing ended there. I told her I didn't want to upset her because I was sure she was going through a lot (her children...especially her son sounded even more critical than mine were...lung issues not dissimilar to my Edwin, but large bleeds, hydrocephalus AND NEC.) Nevertheless I told her that S&E are happy, loved, and the lights of our lives. But also told her the other realitites of our lives which include continued respiratory issues and Edwin's likely mild hypotonic CP which has not been officially dxed, but it extremely clear to me. I talked about some other things keeping the conversation light.
Immediately her response was "why do you think he has CP?" "When did you notice he had CP?" etc. I thought to myself, wow...I fully expected both my children would have CP and never imagined my son would walk because after all I had read from other's stories, the frequent desats and my worry about hypoxia, S's strange "echogenistity" (sp?) on her head ultrasound at discharge...I'm pretty thankful his suspected CP is mild and will still allow him to walk. This mom seemed really surprised and worried, and I had to remind myself she may not have had as much info as I did.
I responded by telling her he was always behind his sister in development, and his low tone became noticable when it became time to sit up, and he was at first unable to sit without support from us or his hands. I also went on to tell her that many children born at our children's gestation will be dxed with CP among many other things and told her I had more information about that (statistical from Helen and here and anecdotal from my fellow preemie mom's blogs.)
I also told her I have tried to prepare myself for what lies ahead, but that I enjoy every single day with my children and am extremely grateful for their lives and am very pleased with how they are doing as of now. I offered whatever support I could be.

She never wrote back.

I felt kind of guilty for a moment, and then I thought, no. I'm not going to lie about my children. I am not going to pretend my son doesn't have hypotonia. I post videos that show their development, so it's not a secret that he struggled to pull to stand the first time and that he needs to rest his trunk when he cruises at times. Maybe he looks "typical" to the unexperienced eye, but if your going to ask about my kiddos, I am going to tell you the truth about how I feel (overjoyed they survived, the most important people in my life, etc) and about how they are doing.
I am so thankful I am prepared for what could lie ahead (as emotionally prepared as I can be), but I wonder sometimes if the moms who email me are ready for this blog. Because in all fairness we don't always talk about issues like this (which I find so much more helpful) and we (including myself) get caught up in resuscitation and what being disabled means to the individual and their respective family.

23wktwinsmommy said...

Sorry Serena came over and messed with the computer before I finished.
So I am extremely thankful we are talking about this. And I 100000000% agree with your "more thoughts on the MOD" comment and Terri w/2's comment about why many women don't see prematurity as a problem. Changes need to be made. I would so love to have us speak/particpate in a helpful prematurity summit where OBs and neos listened and participated!

The Preemie Experiment said...

23wktwinsmommy wrote: "I am so thankful I am prepared for what could lie ahead (as emotionally prepared as I can be), but I wonder sometimes if the moms who email me are ready for this blog. Because in all fairness we don't always talk about issues like this (which I find so much more helpful) and we (including myself) get caught up in resuscitation and what being disabled means to the individual and their respective family."

I just read what I wrote (that you were responding to) and realized I was a little confusing. I wasn't telling you to tell the new mom about MY blog, I was referring to yours.

While I feel that ALL of the topics that are discussed on my blog are needed, I wouldn't tell anyone to offer up my blog when they were the one contacted.

And, now that I am re-reading what I am writing now, it is coming out with a snarkiness that I am not intending, so please don't take it that way.

Anonymous said...

Don't feel guilty! I SO wish someone had talked to us like that!

I've thought many times about starting a post-NICU support group, but have no idea of how to go about it...

We've stayed in touch with the hospital (right around the corner, and one of J.'s former nurses lives up the street), and several of the parents who had NICU babies at the same time we did.

Some who originally said they wanted to keep in touch, though, eventually disappeared-- one was completely honest with me and said it was just too hard to be reminded; she wanted to "put it in her past."

Our hospital was Catholic-affiliated, and I have to say, offered tremendous support for those of all faiths. I wonder if I could/should contact the pastoral care department: what do you think of the idea that there should be counselors trained to present issues and outcomes to preemie parents?

Anonymous said...

Sorry, I was that 9:02: Kyrsten :)

Kyrsten said...

Reading my last post I think I'm going off-topic again (sorry-- baby bear is cranky, I'm tired and my brain is in a million directions today).

Thinking about the whole "catch-up-by-age-2" issue made me think of secondary diagnoses ('told you my mind is all over the place). My grandmother had Altzheimer's; what we learned was that the disease itself cannot be given as the primary cause of death: it is merely an underlying diagnosis that causes many other difficulties.

Why not the same for prematurity? (Why can't it be noted as such, to grasp the "bigger picture" throughout a child's life? --or is that an undue label?) Just a thought.

OK, what we need is longer follow-up and a national voice to get it.

Maybe this blog should be the beginning of a new organization...

Kellars Mommy said...

Though I feel that our dr's were great with not only Kellar but also with keeping me well informed Kellar is no longer being seen by them. We were *discharged* from the follow up clinic b/c he was doing so well, this kind of shook me a little bit. Our dr's here ( no offense to any of them) really don't treat Kellar as a preemie, while on one hand it's fine on the other hand it also concerns me. Kellar has not had his head circumference measured in, well I can't tell you the last time, he hasn't had his length measured since the last time he had his head checked, the dr never puts him down and watches him walk, he never *watches* him to see where he is or where he may be lacking developmentally, this bothers me but when we go in for a sickness our dr is so busy that I always leave there with 100 things on my list I had intended to talk to him about and it's like that one time I blinked poof he is out the door. I would love to continue taking him to the nicu follow up clinic but that is a 3 hr drive, yes we are 3 hrs away from anything preemie related, 3 hrs away from any in depth preemie related care..So does it bother me that Kellar is not being followed, yes of course especially since he had sever brain bleeds and a *cerebellum* bleed, there isn't very many studies on this bleed in children so I figured surely he'd be followed that way more parents who may be faced with this may be helped one day, but no such luck. I didn't participate in the mod walk this year, I think I was manly pouting b/c they did away with our walk here, Kellar was supposed to be the ambassador and I get a email, not a phone call but a email that they will no longer have a walk here. I worked hard my 1st year with a newborn at home, a broken ankle and very little time on my hands to raise money and it's like none of it was appreciated, I'm assuming it's b/c our turnout here is small but still money is money and every bit should help. I also feel put off by the fact that they always use smoking and drinking, unhealthy lifestyles as a *cause* of prematurity, sure it is a issue and it does contribute to it but I was not one of those women. I went out of my way to do everything I was supposed to do and then some. I don't mind seeing sucess stories, it does give a parent a little bit of hope, but you are so right there does need to be a look into reality of those that don't have that perfect preemie with no issues left lingering from their prematurity!

Anonymous said...

Kellar's mommy, you need to get into a "medical home" practice that will give you more access to your physician. In fact, the medical home guidelines at APA suggest 24/7 access . . . Please, look up this strong suggestion from the APA (American Academy of Pediatrics) and remind your pediatrician about it (first issued in the 1960s), and ask him/her to set it up and make you and Kellar his/her FIRST medical home patients.

How to make inroads into neonatalolgy? Get the neos to listen? In my area, the neos are together in a large group practice. The contract out to the hospitals that have Level III nurseries. If you have a similar set-up in your area, a large group practice, you could approach the practice through the medical director neo of the NICU where your own child was treated . . . and ask for what you want in terms of follow-up, getting the GENUINE word out to the press, etc. Worth a try, I'd think.

Another possibility: Ask your follow-up ped to create a new diagnosis for his/her ex-preemies, such as "preemie syndrome" or "pervasive developmental disabilities stemming from prematurity". Then, trick the insurance companies into honoring that new diagnosis, or at least suspending restrictions till they have looked into it. Write the American Academy of Pediatrics and ask for these diagnoses r/t prematurity to go onto their web site; and to develop info related to these complex preemie issues . . . Insurance companies would certainly pay attention to something that is accepted by the APA. Thus, those of you with co-pays that add up so rapidly; and those of you in danger of maxxing out your insurance with your ex-preemie's needs . . . could get a piece of support. Maybe not comprehensive support--but a PIECE of support.

I like this brainstorming that we are doing. Thank you!

Chris and Vic

Anonymous said...

Dr. Rob talks about "Medical Home".

http://distractible.org/page/3/


Chris and Vic

Kristie McNealy said...

Re "prematurity as a primary diagnosis":

In many ways it is. When presenting a patient on rounds or in clinic, the first sentence for a preemie (usually) goes something like this - "C is a 2yo, former 31 weeker, with a history of blah (NEC, CLD, etc)."

While it isn't always obvious, the preemie issue does color the medical history, and change how docs think about the differential diagnosis (ie the possible disorders that could cause the symptoms in question). Sometimes that's a problem, when a doc says something totally not helpful like "she's a preemie, what do you expect?".

On to other things.

I think this is one of the best discussions on prematurity that I've read in a while. It hits home on so many important issues.

I love Stacy's idea of a charity to benefit survivors. We have our own ideas on that too. Problem is, I've found that prematurity is just NOT a popular issue in the press. I worked with a PR company on getting press related to prematurity awareness month last year, and we only got one bite, and they went with a miracle story instead. I don't know where the money would come from, although it is vitally needed.

As for late pretermers, our 36 weeker had a speech delay, and didn't catch up with that until age 4.

Enough Rambling,
Kristie

Kristie McNealy said...

As far as media goes, I am in the process of pitching a preemie story to some parenting magazines for Prematurity Awareness Month this year. This is my idea, but I'm open to suggestions:

I'd like to feature 4 families with babies born at roughly the same gestational age, who have had very different outcomes. I'm hoping to find families willing to share their stories who have mild, moderate and severe problems related to preterm birth, and if possible, a parent who chose either not to resuscitate, or to remove care. I don't have any strict criteria for what is mild, moderate or severe. I just want to show that there is a spectrum.

I'm wondering what all of you think the take home points should be, aside from the fact that prematurity is a problem, and there are a variety of different longterm impacts. I'd like people to know that impacted kids aren't just unlucky - they are more common that the media would let us think.

-Kristie

23wktwinsmommy said...

Sorry for the confusion Stacy. It was actually *my* idea to refer them to this blog, but I get a little nervous doing that for every parent because of reasons I mentioned. Afterall, I mentioned E's probable mild hypotonic CP and that halted the emails. I think this is an excellent source of information, and if parents are prepared to hear the truth, then *I* think they should eventually tune in here. For some that may take longer than others.

This medical home model fascinates me. C&V do you have any personal experience with it?

Kellars Mommy said...

C & V
I am about to go to the link you posted. Thank you!

I think my biggest frustration is that they *don't* treat Kellar like a preemie, some may rejoice in the fact that their child for once is treated just as any other child would be, but I worry that there is so much that is overlooked..

Kristie I think that is a great idea! I have actually wrote to a well viewed tv program basically begging them to do a show on prematurity, I suppose it has fallen on deaf ears but I tried..

Anonymous said...

About the medical home approach to care:

Yes, I am working with a large pediatrics practice in my area to establish themselves as a Medical Home practice. I am on the parents' advisory board, and I write articles for the newsletter, which goes out to families of kids with special healthcare needs. (It is also online.)

" The American Academy of Pediatrics describes the medical home as a model of delivering primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective care."

http://www.medicalhomeinfo.org/

This practice has been working on medical homeness for about 3 years. To date, they have gotten 2 grants, now being used for the newsletter. They polled the families having children with special healthcare needs (CSHCN) to find out what topics to present in a newsletter. The newsletter will also feature personal stories of CSHCN from the point of view of parents and sibs.

Every 6 weeks, a different condition is featured: autism, asthma, sensory integration dysfunction, bullying, IEPs, etc.

The next grant will be to hire a care coordinator to establish individualized care plans for each family.

Until then, the office triage staff now have scripts for CSHCN families--in order to triage them more carefully. Each chart is flagged, so that visits are given more time than non-CSHCNs. The docs say they provide better access to these families, but I have never put it to the test.

There is now an information center near the entrance to the office that provides medical home info as well as info on the various "special needs" (children's chronic conditions, such as asthma; autism & other behavioral and mental health issues; learning disabilities, etc.)

I believe there are only 2 or 3 other practices in the state of Wisconsin, my home state. Medical home is catching on more quickly in the northeast. If you Google "Medical Home," you will find some of the practices in Vermont.

PCPs have picked up on medical home, and they are taking it and running with it much faster than the peds, in my opinion. With the PCPs, chronic conditions are managed by disease management practices, which is very close in philosophy to medical homeness.
You can look up "disease management" to find out more about how this is translated to adults with chronic conditions (diabetes, hypertension, depression, COPD, etc.)

I began looking into this during my Masters program . . . and found it made sense, and was fascinating. If/when we ever get universal healthcare, this model will be part of that infrastructure, I am sure. Dr. Rob's blog does justice to the business model . . . (See earlier comments made by me, where I refernce Dr. Rob's blog, "Musings of a Distractible Mind", p. 3.

Chris and Vic

Carrie said...

After checking in here yesterday, I watched the local news and they showed the March for Babies that took place here this weekend. I became really emotional, started crying, ugh! So, I was up a while longer thinking about this blog and MOD. How does an organization like MOD get started? How come "we" don't get another organization going? An organization that does all that you're talking about Stacy.
(Can you guys tell, I am totally Type A personality?)
I really want to do something to get the word out there. I want to do something to help provide support for parents in the NICU and beyond. So, what can I do? I want to do!
Carrie

Kristie McNealy said...

To Carrie:

To get started with a non-profit that would be able to generate the kind of money we'd need, I think you need one of 2 things, either a "hot" news topic (think autism, breast cancer) or a celeb who has been impacted that would be willing to make appearances, talk about on Oprah, etc...

We talked with several different PR and non-profit experts about our own ideas, and that's basically what they told us.

As far as MOD goes, they started working on polio, and back then, that was a very hot topic in the news because it impacted a lot of people and was very scary. Over time, they focussed more on birth defects, and then eventually prematurity. So, by the time they started their prematurity initiative, they were already known, and had regular contributors. The fundraising people at our MOD stated that most people they meet with about partnerships have no idea what they even do.

Unfortunately, prematurity isn't a very popular news topic. That's not to say something shouldn't or can't be done, but it's going to be very hard to generate the needed money.

For some reason, prematurity is a very tough nut to crack. Preemie mag went bankrupt, another preemie oriented mag never got enough funding to print their first issue, and there are many non-profits which have gone under.

Enough negativity though. I'd love to hear ideas of how we could really make something like this work on a large scale.

-Kristie

Anonymous said...

Dear Stacy,

I just wanted to say that I have found your blog educational. I appreciate the open discussions about the long term effects of prematurity. I am the mother of a 25-weeker who just turned 1 year old on Wednesday. My son is currently doing very well, meeting or expecting developmental milestones for his adjusted age.

I have been doing a lot of research on prematurity ever since my son was born (emergency c-section). In the NICU, the doctors and nurses repeatedly told me to "stay away from the Internet," and I was given the same line by my son's first pediatrician. I usually start off with Internet searches and then go to the primary journal articles on topics that seem pertinent. I'm not convinced that a lot of medical personnel stay on top of current research. And, I have been given the "catch up by 2" speech by numerous doctors.

Even if there were no long term effects of prematurity (which much evidence says otherwise), the whole "catch up by 2" mantra doesn't make sense to me physiologically. It seems to me that development begins when the sperm meets the egg. If a baby's body is essentially programmed to develop in certain ways over a period of months, how would a preemie suddenly make up those weeks or months of development? My husband and I took our son to a neurologist who said that our son looked great but that his head was too small. I looked on her chart and realized that she had plotted his head circumference by his birth age (2nd percentile) instead of his adjusted age, which would have put him at the 25th percentile. When I pointed this out, she said, "He should be at his actual age." He was 6.5 months adjusted at the time. The birth age/adjusted age seems to befuddle a lot of medical practitioners of various types, resulting in what we have considered questionable medical advice and/or observations at time. Again, underscoring to us that a lot of doctors don't seem particularly well read on the topic of prematurity.

I suspect that there are a lot of long term effects that simply unfold for micropreemies especially. But I also wonder about improvements (not necessarily resolutions) to development could be made if doctors did take the time to research and become informed about the development of preemies after they leave the NICU.

Regarding the Kentucky survey, I am not surprised. A friend called me the other day to tell me that she was pregnant with her second child. She has a graduate degree from an Ivy League university. She also has an MA in public health from Michigan. Toward the end of the conversation, she said to me something like: "I just need to make it to 25 weeks with this one, since that's how far your son made it." I was speechless. My son spent 109 days in the NICU. His time in the NICU was rough (although not as rough as some others). Since he's been home, we've made two trips to urgent care (I know, that's not that bad for a micropreemie) and a few extra doctor visits when he's gotten sick. We generally have at least three therapy and/or doctors appointments each week. Anyway, her comment knocked the wind out of me. I haven't talked to her since then.

My husband and I continue to celebrate our son's achievements. But we don't want to face the future blindly. Putting on the rose colored glasses doesn't strike us as fair to our son. We need to be aware of the long term consequences, so that we can handle those consequences in ways that will give him the best future possible.

Anyway, thank you again for this blog and your insights into the long term effects of prematurity.

Best wishes.

Kellars Mommy said...

Some may think I am nuts but when Kellar first came home from the nicu I found myself so bothered that there was no *big* endorsements for prematurity, sure there is the MOD's but I am referring to in the news constantly, some celebrity helping to get the word out there that their needs to be a true fight against prematurity, ya know sort of like they are about feeding the needy, the fight against aids and such. I would like to see someone "big" behind prematurity. I wrote the Oprah show several times, and then I read an article where Oprah actually lost a child to prematurity so maybe it's just me but it looks like she would want to do a show on this, but guess not. Sorry gotta cut it short Kellar is throwing a fit over the phone!

Anonymous said...

What about partnering with some very successful topic/movement, such as "fertility treatments"?
In the hopes of riding along on their coattails . . .

My 2 daughters who are grant-writers say that partnerships between to organizations or companies attract the attention of grantors. Parnering seems to win their approval and support.

If, on a local level, we could set up a dialog with fertility specialists/clincs, which would be natural due to the link between prematurity and multiple births, perhaps we could get in on their popularity. I'm not even talking about grants--just shared publicity.

Chris and Vic

Kellars Mommy said...

That would certainly be a start as well. I had fertility treatments with my 1st ds, the treatment was not my cause of delivering early however and with Kellar I had no intervention but fertility treatment has certaily gotten a lot of attention w/being linked to early delivery.

The Preemie Experiment said...

Thanks for a wonderful discussion everyone!

I do think there is enough of the prematurity pie to go around. There is no reason that more than one non profit organization can't exist.

Personally, I would like to see one that focuses on helping with the financial strains of caring for a preemie. How many parents out there would be happy with a little money to help with co pays even!

I have been thinking about this project for a few years now. I was feeling a bit overwhelmed by it all but thanks to all of you, I'm feeling back on track.

Now to find an attorney that would be willing to help with the filings. I'll keep everyone posted. If anyone would like to help or has any other ideas, I highly suggest emailing me privately. Having a patent attorney in the family has taught me to never be public with ideas. hehe

And, if anyone is really serious about it all, we could set up a private blog or yahoo group to discuss it.

kate said...

Thank you for this wonderful discussion and for raising all of these issues!

23wktwinsmommy said...

A If dh makes it big within the next 3 years and we have the money to contribute to an organization that helps financially with preemies we will! (For those who don't know dh is a professional boxer and a hot up and coming prospect.)
May I also add that this organization could also build therpay centers focusing on pt, ot, speech, sensory integration, aquatic therapy etc etc. I have been having the most incredibly difficult time finding anything other than EI, in-home PT services, which I feel are not doing enough. When I called the rehab clinic to see if we could take E there to use equipment, the pool possibly, I was told they don't take children with developmental delays under the age of 3, and even after 3 they usually don't. They are a short-term rehab clinic and in our area it's up to EI until 3 and then it's the school system. There is no where locally I cna take my kids for therapuetic play, and I wish there was! So add that to the 'to do list.'

Kellars Mommy said...

23wkstwinsmommy

I so feel your frustration w/therapy clinics and such. We have EI and one other place and I would so love to live in Dallas where Kellar was born, here where I live they don't deliver before 32 wks and here I am with a former 26 wkr. wow!
Speaking of attorneys? This is just something totally off topic, but do any of you feel that your early delivery could have maybe just possibly been postponed if someone say a dr at a well known hospital had taken you serious about contracting? I am not referring to Dallas, that was the 2nd hospital I was transferred to and they were beyond WONDERFUL with me, just curious if any of you have 2nd guess decisions that were made!

Oh and Stacy financial help, oh my goodness I also find myself so many days just want to scream! Our pedi here doesn't accept medicaid, so everytime I go I have to pay our ins copay and that is $35 and there were times he goes at least 2 times a week,then some of those visits I have to pay a balance on top of the copay, some of his meds weren't covered and they were 180 a month...and then there's the whole balancing working,therpapies,housework...and i know that some of you are able to balance it all and god bless you but how do you do it??? i don't work my hubby does the best he can to make ends meet but the stress of feeling like i need to is still there on top of the worry of kellar needing me daily..

Sis Sarah said...

both my babies came early via pprom. I was very lucky that they made it as long in the womb as they did.

But how on earth would the dr.'s, researches whoever know what happens to 35 weekers that are sent home. No one asked me.

My 33 weeker, spent 5 weeks in the NICU, was a pain in the rear to feed but has been healthy since.

My 35 weeker was jaundiced, failed the car seat test, awful to feed (too sleepy) had a milk protien allergy (pooing blood) at 5 weeks and at 6 months old when he got parainfluenza ended up permanently on oxygen, which we later found to be caused by interstial lung disease.

The worst part is that women on purpose will have there babies at 35 weeks by crazy ob/gyn's that don't see the urgency in having a healthy women deliver near or at term.

Anonymous said...

TPD here.

There seems to be a feeling among many here that to take prematurity seriously, one has to rid herself of the silly notion that her child is a miracle, and instead carry around the proverbial microscope, and have at the ready the laundrylist of ways in which the child falls short of "normal."

This extends even to children born days shy of fullterm.

I actually used to think MOD had the wrong focus, but after seeing the alternative, I have changed my opinion and I think MOD has it right.

As parents we have hardships, and a child's suffering is truly unbearable. Yet, isn't it important to consider the risk of emotionally harming children - born too soon through no fault of their own - with some of these (I think self-indulgent) comments?

No doubt there is benefit to individuals and society in considering the issues, but as a parent I am not supposed to be dispassionate or objective about my child. I don't think it should be that hard to understand why most parents would be reluctant to publicly label their children as irreparably damaged by prematurity.

Only time will tell, but if you simply look at how grown children of divorce personalize the event (divorce) that wasn't even about them, I imagine former preemies might be pretty down on themselves after hearing or reading their parents negative assessments of their lives.

Kellars Mommy said...

TPD
I'm not sure that I understand who you may be referring to. If I have said anything to make you question if I for one day regret any of the choices that I made I can tell you 100% that I don't.

Anonymous said...

Anonymous- I know its hard for you because your 25 weeker just turned one and you keep waiting for the other shoe to drop. My 25 weeker is much older and no other shoe ever dropped. Exceptionally well at age 1 just kept improving and we have moved beyond prematurity. I was like you, always scouring the internet. My advice is to get the most therapy you can- even more than is recommended. I think it helped rewire the brain, don't know. Anyway, mine was caught up by 2.

terri w/2 said...

TPD said: "Only time will tell, but if you simply look at how grown children of divorce personalize the event (divorce) that wasn't even about them, I imagine former preemies might be pretty down on themselves after hearing or reading their parents negative assessments of their lives."

The MOD has already done that. .a number of years ago, I wrote an article for Exceptional Parent about the MOD and their "footprint" ad that was out at the time in every major women's magazine. .one tiny footprint next to a fullterm footprint, and the caption simply said "Guess which mother smoked/drank/did drugs while she was pregnant" (There were different versions of the same ad). I was enraged to say the least.

After the article appeared in EP, I got letters from parents all around the country - parents of kids with heart defects, spina bifida, etc. One parent said that the MOD had a TV ad on in her area - several mothers sitting around in a circle discussing their newborns. All the mothers said what they LOVED about their new baby - then it came to the mother with a baby with spina bifida. She said I "hate" spina bifida. The mom who wrote to me had a child with spina bifida who SAW the ad. The child burst into tears because he thought his mother hated him too.

The damage the MOD is causing is irrepairable. I believe that the reason why adoptive parents of children with special needs, foster parents of kids with special needs get SO much help is because there is an underlying theme of blame the bio mother going on which in part is certainly perpetuated by the MOD.

The MOD could be campaigning in a completely different way - right now they talk primarily about "research" - helping babies who are premature become healthy through support of neonatal research. Really? What has changed in the past 25 years that is making preemies healthier? Shouldn't someone stand up and say that their work is pretty much a farce? Who is it benefitting? While they claim to be making babies healthier through "research" - the prematurity problem continues to get bigger and bigger.

I agree - money should be diverted to helping families pay for therapies, etc for former preemies. This is what the MOD did for polio patients when they started. Why are they ignoring families now? Because it's easy to when the focus of blame is on the mother who supposedly caused the problem.

Anonymous said...

TPD. I'm not referring to anyone in my comments, just thoughts about the current topic.

I feel the same way about the focus on "blaming" the mothers. The vast majority of the causes of prematurity have nothing to do with maternal behavior. But that is one thing that can be changed easily, I guess, so perhaps that is where MOD is focusing to make an impact. The negative consequences though are great.

That's basically how I feel about parents publicly comparing their children to "normal" and counting the ways in which they fall short. I know the intent is to raise awareness, and that aim is certainly achieved, but at what cost? My opinion is that the cost of a *parent* taking on that role is too high.

Anonymous said...

TPD again. I also don't care too much about how we adults feel or don't feel about the issues of prematurity, the decisions they've made, etc. I am more concerned with the impacts on the children and whether our actions and words are supporting of them or cause them more suffering.

The Preemie Experiment said...

TPD wrote: "Only time will tell, but if you simply look at how grown children of divorce personalize the event (divorce) that wasn't even about them, I imagine former preemies might be pretty down on themselves after hearing or reading their parents negative assessments of their lives."

Dear TPD,

Divorce is a REAL serious issue with prematurity, as it is with kids with special needs.

If you were to take a poll on any on line support group for parents of preemies, I can assure you that many are either divorced or their marriage is in severe trouble. This is why I included it in this post. Actually, I have devoted other posts to it too.

One thing I found very fascinating was when a person commented about their experience with a social worker telling them about the possibility of divorce. It made them work harder at their marriage. Their story made me realize that the strain on ones marriage HAS to be discussed.

When you have a child born with a specific special need, you mourn and deal with the stress. Eventually you hopefully come to a place of acceptance.

With prematurity, the diagnosis of MANY issues constantly looms overhead. There isn't just one thing we end up worrying about. Although "acceptance" occurs, the stress of the continuance of the worry and waiting is hard on relationships.

As far as your concern with preemies reading what is discussed here, and many other places on the web, if we (the many blogs) didn't exist they would also run the risk of reading the same discussions in the books that are already out there in the bookstores. Again my words are sounding snotty, which is not what I am intending, so please do not take it that way.

I feel this blog can be used by all, both parents of preemies and preemies themselves. In the last year and a half since I started the blog, I have received quite a few letters from former preemies who now have a better understanding of their issues. I am quite proud of this and so very thankful for all of the people who have commented.

Kristie McNealy said...

Without these discussions, we'd end up with the opposite problem. Our kids would grow up thinking they are alone in their issues, with no one around who can relate to them. I think it would be helpful for our kids to know and be able to connect with others who have similar problems once they become aware of any preemie related differences or difficulties they may have.

This shouldn't be something we have to hide. With an awareness of the problems, those who are able can be excellent advocates in the future. They need to know, especially considering the results of the recent study that showed our girls are more likely to have preemies of their own.

-Kristie

Dee said...

TPD:

One of my very good friends (Lets call her Jane) is a teacher and partially qualified as an educational psychologist. She has struggled endlessly with guidance counsellors and others at a very good private school (which we both attended) where they simply will not give a number of children/teens a diagnosis.

These are kids with severe learning and emotional/psychological problems. They have expressed to Jane many times that they don't know what's wrong with them, and continue to do poorly at school. Jane believes that a diagnosis (which the guidance counsellor/psychologist has, but won't give to the child) is empowering, because once you know what's wrong, you can start to fix it.

Just imagine how you would feel if you knew there was something wrong with you, but everyone maintained that you were "normal". If, for example, you couldn't run as fast as your peers, or read at the same level, or you struggled with sports or were extremely sensitive to loud noises.... Children aren't stupid - they can tell when something is different about them, and other kids will often make them aware of it too! I know I would feel quite confused, I would wonder why I was different, I would feel excluded. And if I was to only find out as a teen or adult why this was the case, I can promise you that I would feel betrayed and extremely angry.

Letting your child know that they have a serious medical condition that might affect them is extremely empowering. It allows them to explain to other kids why they may be slower or have medical problems, and it also ensures that they understand why they might be experiencing certain difficulties.

How much worse would it be to know that there is something wrong with you, but not have anyone tell you why, than to be "labelled" as having "preemie syndrome"? Why is this a worse label than autism, or ADD, or chronic fatigue syndrome, or cancer, or any of the other million diseases children face?

23wktwinsmommy said...

TPD, I definitely hear what you're saying. I think it is in the way that we say things, especially to our children that can help protect their feelings.
"Different" is a term that comes with a lot of weight...usually it can have a negative connotation. But, the fact is, many of our kids are "different" and I think there is a balance between trying to see past those differences and acknowledging them. For example, it looks likely that we're going to get the mild hypotonic CP dx for E (with much pushing from me). Everyone expects him to walk, but let's say he'll be clumsy. Once in school it will be important for me to make teachers aware of his low tone for his own safety purposes. He's different because of his prematurity, because he has CP. We can't change that. What we can *try* to change is the way people see him, and all kids who have special needs. We can teach our own children (everyone) that different doesn't equal bad.

In terms of raising awareness of the true effects of prematurity, I really think it's vital. Human biology calls for 9 months in the womb, when this doesn't happen, there are effects that often can't be reversed. We shouldn't be weary of talking about this. I *personally* feel like a better parent knowing that the effects of their premature birth will likely effect many areas of S&E's life...medical, developmental, school, possibly behavioral, etc. Why is this important? Because it opens the door to acceptance and then action. Taking that action will be easier if we are all on the same page in terms of knowledge of prematurity and how the effects persist for many. Especially with regard to the medical and education community. I have read about Drs who are charting head circumference on the actual age at 6 months old, and telling the parent their concerned? Hello!? You need to correct for prematurity at only 6 months old!
Additionally, it would make my life even easier if more people understood prematurity. When S&E were younger, they were very afraid of sudden loud noises like loud laughing. E would cry so hard he'd throw up. When I tried to exaplin this to dh's fam, they thought I was too overprotective and "babied" them too much. When they constantly ask when he's coming off O2, or when they'd ask if they were walking yet, maybe they'd understand that these things don't come as easily when you're born 17 weeks too soon. It's wasn't a given that they'd ever walk. This is hard for people who don't know prematurity personally to grasp.

And as far as the MOD, my hope is that they are researching the causes of premature birth...and not smoking, drugs, or alcohol...we'd pretty much figured out that's not such a good idea...thanks MOD, let's move on.

Kate K. said...

My name is Kate. I’m the mother of the 25-weeker mentioned in a previous post (Anonymous from May 5, 2008 12:28 AM).

First, to Anonymous (May 6, 2008 2:35 AM), thank you so much for your comment. Just as I want to be realistic about outcomes, I do enjoy hearing when micropreemies are doing exceptionally well as older children. We have been pushing on the OT and PT appointments, getting them to come once a week (as recommended by my son’s neonatalogist at the developmental clinic). It was hard finding ones in our area who had time in their schedules. We live in Tucson, where there is high demand for pediatric OTs and PTs. Unfortunately, the demand is higher than the supply. But I think that we’ve finally got them and have things worked out.

Second, to TPD, regarding your comment, “There seems to be a feeling among many here that to take prematurity seriously, one has to rid herself of the silly notion that her child is a miracle,” it may seem paradoxical on the surface, but it is simultaneously possible to cherish that one’s preemie is a miracle BUT also want to be informed about and to inform people about the consequences of prematurity. My son is definitely a miracle. He is amazing. That said, if I had a billion dollars and was given the opportunity to use that money and rewrite history to give my son the birth experience that he should have had, I would do it in a heart beat. Another seeming paradox. I feel that the experience of having a micro preemie has made me a better, stronger, more compassionate person than I was before. Again, that said, if I could rewrite history, I would.

One problem with the use of the term “miracle” is that it is subject to a wide variety of interpretations. When news stories about “miracle” babies are written or aired, they leave the impression that the child has been saved and that’s that. End of story. Fade to black from picture of parent cradling the miracle child in her arms. Happy ending. The roller coaster has ended. My concern is that such a story leaves people with the impression that if one has a preemie, there will be no consequences for that prematurity (resulting in ignorant pregnant women pushing their doctors to induce early deliveries and ignorant doctors complying). When I use the term “miracle,” it comes with also knowing that the roller coaster is still there (although thankfully as of late, our roller coaster has been on the kiddie track where the bumps are small and mild).

Regarding what to tell preemie kids, there is certainly some information that may not be appropriate for kids to hear until they are older. Just as one monitors the movie content that their children are exposed to, I assume that parents also monitor news content (as some topics on local and national news are not appropriate for kids, depending on their ages). In terms of public knowledge, I assume that having a well-informed public is preferable to an ignorant one (whether we are talking about prematurity, cancer, the 2008 presidential election, or tax law). Dee raises some interesting points about labels and empowerment. It wasn’t too long ago that it was NOT the norm to recognize mental health as a serious topic. Can you imagine how many women with PPD thirty years ago felt that they were alone and somehow defective? That couldn’t have been good for them or their babies. Knowledge is power.

Chris and Vic’s list of topics for a potential Prematurity Summit is excellent.

A final thought on the MOD message of targeting pregnant women who are abusing drugs and alcohol. It is a difficult problem, because they are trying to prevent premature births. There is some research which suggests under certain circumstances “fear appeals” can change people’s behavior. They want to change people’s behavior. It is unfortunate that the less cognitively sophisticated members of the public assume that because alcohol and drug abuse can cause prematurity, this means all premature infants are born to those who have abused such products. I teach research methods and statistics at the college level. My undergraduate course in research methods contains a segment on argumentation and logic. Getting across that “If A, then B” does not mean that “When B is present, then A must have happened.” It is a difficult concept for people (even college educated ones) to grasp. I may be in the minority here, but I hope that the MOD continues to work on that issue (even if that means that I occasionally have to deal with people wondering why my son was born so early and perhaps making uninformed inferences about me), because I suspect that the fear appeal commercials on alcohol and prematurity are somewhat effective. I share the hope with 23wktwinsmommy that the MOD is also putting a lot of research into the unknown causes of prematurity. They will have to continue the "don't drink while your pregnant" messages, however, because while we may know this (and think that this is stunningly obvious), there are younger generations that still need to hear the message loud and clear. Because MOD may have their hands full dealing with prevention, it may be time for a new organization to appear: one focusing the health and well-being of premature children and their families (rather than prevention).

The Preemie Experiment said...

Kate K wrote: "A final thought on the MOD message of targeting pregnant women who are abusing drugs and alcohol. It is a difficult problem, because they are trying to prevent premature births. There is some research which suggests under certain circumstances “fear appeals” can change people’s behavior. They want to change people’s behavior. It is unfortunate that the less cognitively sophisticated members of the public assume that because alcohol and drug abuse can cause prematurity, this means all premature infants are born to those who have abused such products."

Kate, I think the problem is not that MOD is educating the public about the dangers of drugs and drinking but that is the ONLY message that MOD is putting out there.

There needs to be other discussions, in the PSA's and in their literature, about unknown causes, HOM (higher order multiples), fertility treamtents,advanced maternal age and the link to dental issues.

Kate K. said...

Stacy, thanks for the clarification.

PSAs are only effective if they contain a strong, clear message. I don't think that would be an appropriate format for discussions about unknown causes, even though it is the case that there are a lot of unknown causes to prematurity. But certainly unknown causes should be discussed in news stories, websites, etc.

The fertility treatment aspect of prematurity is an important one. What are the statistics like in that area? If one uses fertility treatments, what is the likelihood of having a premature child? Someone had mentioned discussing the topic with fertility specialists. I suspect that the conversation might be rather short, given that it is unlikely that a fertility doctor would want to hear about how they may be contributing to an epidemic. It would be interesting to survey fertility doctors to see how many of them are aware of the long term consequences of prematurity.

Multiple births is another interesting area. What percentage of the prematurity cases from the fertility treatments are a result of the multiple birth scenario?

Anonymous said...

TPD feels that diagnoses and labels are pejorative, and can leave a child feeling bad about him/herself or unworthy or different. Yes, that can happen.

But the IFSP and the IEP and the 504 plans work the same way. If we avoid "preemie syndrome" or "CP" diagnoses NOW, our kids will get diagnoses as they approach school age anyway . . .

IEP plans are supposed to play to the child's strengths: "Find the good and praise it" and reinforce it and compensate for weaknesses with strengths, etc.

But the reality is that there is a school-based diagnosis and it IS pejorative . . . and you end up saying to your child, in actions and in words, "I love you the way you are".

It is a balancing act--strengths and weaknesses. "Printing is hard for you . . . but that's okay. You can use the keyboard most of the time." "Balancing on one foot is hard for you? That's okay--we'll keep working on it. Take your time. You can do it". Etc.

Chris and Vic

23wktwinsmommy said...

Just a quick pointer about my comment on the MOD...I still think the MOD should talk about prevention (including drugs/alcohol/smoking) but I was referring to research. I hope they're doing research on other causes of premature birth, as I think it's clear from previous research the above is unhealthy for the unborn child.

Anonymous said...

--Getting across that “If A, then B” does not mean that “When B is present, then A must have happened.” --

I think this is such an excellent example of why I am concerned about the negative connotations that the word "preemie" conjures up. Contrary to the experience of many others, my experience has not been that people assume that former preemies are all caught up by age 2 or 3. Rather, the assumption is usually "if B (premature birth) then A must be true (something is wrong with the child)" Case in point: on the kindergarten admissions forms, the school nurse asks for birth histories for children (gestational age at birth, weight, medical complications, etc.) I suppose I'm just cynical, but I see that sort of inquiry as having more potential for prejudice than anything else.

I'm not pretending to have all the answers, and I completely agree that there is value in acknowledging differences, providing diagnoses, and the like. Those things are all on the individual level.

I am concerned, however, about preemies being deconstructed to the sum of their various abilities, to the point where the next logical step is to start questioning at the "societal" level whether their existence is worth the cost, and at what gestational age to start asking that question (and who makes the final decisions).

It would be nice to be able to neatly separate the two, but I don't think it's possible. My choice has been to deal with issues as they arise, but not in the context of looking backwards. I personally think the notion of a "preemie syndrome" (ie, a collection of disorders or ailments shared by some statistical slice of former preemies) would be a step in the wrong direction.

Just some random thoughts.

Anonymous said...

That was TPD above.

Anonymous said...

TPD here again. I have come to realize also that my own history and view of the world shapes how I think about all of these issues. I guess it's true of everyone.

My husband tells me if he wants the worst-case scenario he will come to me. I assume that everything I say can and will be used against me. Where other people see opportunities to create public awareness and support, I see ammunition for discrimination. I make a living crafting legal documents for corporations that will spend millions of dollars arguing over the meaning of a single word on a page. I keep coming back to these discussions because I am worried that former preemies, whatever their various abilities, will be defined and labeled throughout their childhoods by their gestational age at birth, rather than by their many attributes over which they have choice and control.

Anonymous said...
This comment has been removed by a blog administrator.
The Preemie Experiment said...

I moved Helen's post to its own blog entry. If you have a comment, please add it there.

Anonymous said...

TPD, in my opinion, it is the lazy and inexperienced who count on diagnostic labels and role-labels to assess and know a person.

If, as may be true in your experience, there is endless debate about the precision of a single descriptive term or label, that is unfortunate. It reminds me of the time in history in the Catholic Church, where theologians debated furiously and endlessly about how many angels could dance on the head of a pin. What does such debate have to do with a true spirituality?!

Contrari-wise, it is the thoughtful and analytic who reserve judgment as they get to know the whole person--who, in the case of a child (es-preemie or not) is evolving over time.

It is a "good fight" to resist being reduced to a label or a diagnosis.

It is a short-cut, sometimes for better, sometimes for worse, that we use labels. It can work--sometimes.

Chris and Vic

Anonymous said...

I found this "list of labels" that I assembled several years ago when I gave a talk about the long-term effects of prematurity in my own NICU (TPD, you will hate this, I'm sure):

Pervasive Developmental Delay (PDD) or "global delays";
Social and adaptive develpmental delays;
Sensory integration dysfunction;
Reactive attachment disorder;
Separation anxiety;
Anxiety;
Hyperseisitivity--sensory and emotional;
Abnormal response to pain;
Hyperreactivity;
Emotional immaturity;
Self-regulatory problems--including impulse control and primitive limbic system responses;
Panic disorder;
Bipolar disorder;
Obsessive-compulsive disorder;
Neurologic tics;
Autism spectrum disorders/Aspergers;
Symptoms usually defined within the autistic Spectrum without the diagnosis of autism;
Cerebral Palsy--mild cerebral palsy;
Symptoms defined within the spectrum of CP without the diagnosis of CP;
Clumsy child syndrome;
Fine motor delays/disabilities;
Gross motor delays/disabilities;
Lack of coordination;
Poor balance;
Low muscle tone/high tone or both;
Dysgraphia;
ROP;
Speech delays
Poor feeding/FTT/GERD;
Growth issues related to altered pituitary or liver function--diabetes;
Learning disabilties;
ADD/ADHD;
Central Auditory Processing Disorder (CAPD)
Short term memory problems;
Post-hemorrhagic hydrocephalus;
Visual-spatial problems;
Visual-motor problems;
Non-verbal learning disability (NLD or NLVD);
Seizures;
Cortical visual blindness/impairment;
Cognitive delays/disabilty;
Orthodontic/dental problems related to narrow jaw and high arched palate (from prolonged periods spent on a ventilator).

Chris and Vic

Kathy said...

On the above list of post-preemie disorders:

Almost a year and a half into my high risk pregnancy and prematurity education, I'm both amazed and appalled that I know what each and every item on that list is, even the abbreviations. It's not NORMAL for a parent who does not work in the medical field to know what dysgraphia or primitive limbic system responses are!

Even though, for us, it's too soon to tell whether or not a lot of those on the list will be a problem for us down the line, and many others have already been crossed off our personal list, just the fact that I've become AWARE of all of these things makes me a different kind of parent than I'd have been had I had a healthy, 40-odd week pregnancy and baby.

Preemie Parenting: Earning a medical degree via Google.