Sunday, April 05, 2009

Adults Preemies Needed for research

Hi, from my friend Stacy's blog:

Adult Preemies Needed for Research
I received an email from an adult former preemie asking if I wouldn't mind posting a request on my blog. Not only do I not mind, I am grateful to see research being done into BPD and honored to help in any way that I can.Let's help him out... pass along the info to any adult preemies you may know. Please note... they are looking for former preemies even if they do not have BPD.

Click here to go to Stacy's blog:

Interesting to note that Steve (and his twin brohter Tim) were born at the same hosptial where my twins were born. Steve notes that he and his brother were some of the first to get Surfactant Therapy (thank you March of Dimes!)

Steve wrote:

"I'm not sure how much information is given out to parents regarding lung function of their preemies, but I can give you a brief idea of what we are interested in. Basically, with the advent of surfactant in the early 1980s (my brother and I were some of the first to get it) it has dramatically helped the long term lung function of these kids. However, as the lung is not completely developed when these kids are born, it finishes it's development while these kids are on oxygen and it is the high oxygen levels that actually stunt the lung's growth and consequently limit their overall lung function later in life.

My brother Tim and I were born in 1980 at Children's Hospital in San Francisco <<>>(see The Premature Baby book by Helen Harrison, we're in there) - I was 2 lbs even, Tim was 1 lb 16 oz. I remember growing up and going back for follow-up appointments until we were in our early teens and remarkably, we have nothing wrong with us. I think a lot of it is luck for being born at the hospital we were at; I know our parents said they were signing experimental treatment forms on a weekly basis! Actually, the only thing we do exhibit that is abnormal is that our lung function is slightly compromised due to the high levels of oxygen we were on while in the NICU for 3 months after being born."


Julie Anne said...

I had twin preemies born at Walnut Creek Kaiser in 1998 at 27 weeks gestation. We have one survivor Jacob. He has suffered with compromised eyesight and becomes dehydrated easily. However we are entering our teen years and I am starting to see some new challenges. I would love someone to talk with me about it at

Anonymous said...

Hello. I am a mother of a 27 year old micropreemie born at 25 weeks gestation and weighing 570 grams. That was before surfactant. I am looking for a contact with similar history to discuss some of the issues we seem to have in supporting him in life. He also has problems with absorbing nutrients from a healthy diet and becomes constipated very easily. Cognitively he functions at about age 5-7 years old but has an amazing (almost scarey) memory for details and excellent social intelligence. My problem mostly is getting health care to recognize his unique challenges given he had such a premature birth and what that means for his overall health as an adult. Leave me a message

Anonymous said...

I am a former preemie born at approx 26-27 weeks, weighed 2 lbs, 2 oz. I was on a respirator and in NICU for 4 months & oxygen after I went home.
Growing up I was sick often, getting pneumonia a few times and chest colds but nothing requiring hospital stays past age 5. I had an uneventful childhood. Played outside often, rode my bike, and sailing lessons. I played volleyball in 7 & 8 grade.
I did start smoking in late teens (ages 19-27), which I now deeply regret. I was told by my parents preemies outgrow their lung problems were supposedly perfectly healthy. I had to give up smoking while in college as I found myself wheezing while everyone around me in the mid-twenties seemed to smoke just fine. I was misdiagnosed at age 26 when in the ER for severe shortness of breath which was labeled anxiety. I dropped my course load and took up counseling; I was convinced that my breathing problems were anxiety,as "nobody gets emphysema in their twenties." I was made to believe I was a hypochondriac.
At age 35, while pregnant for the second time, I was diagnosed with both advanced emphysema and pulmonary fibrosis and could not continue my pregnancy as it brought on blood clots in my legs as well as gasping for breath due to hormones and the effect on my pulmonary function. I was distrustful of the medical community and devastated with my bad lot in life despite being told I was a miracle baby. Docs say my brief smoking history does not account for extensive lung damage. I have trouble breathing at rest often and must pace myself. I find I get tired after a day out when just 10 yrs ago I could do so much more. I did manage to graduate college top of my class, both a phi beta kappa honors and magna cum laude GPA. Looking back now I was immature and socially awkward in many ways throughout my childhood/ high school but was always independent. I had some behavioral problems in 3-4th grade, nothing too psycho. I have one 17 year old son, who was normal weight, healthy. I have been in a long term relationship for 10 years with my high school sweetheart. I worked as an office manager until medical conditions declined; I have gastro/abdominal issues, chronic constipation, aforementioned pulmonary diseased, venous insufficiency (prone to blood clots and varicose veins), bad anxiety, and mild heart arrhythmia which I was on medication until age 4. At 35 yrs old I am 5'6" and approx 115 lbs. I Just wanted to update on an adult former preemie outcome so far. Right now, my big concern is PF and a double lung transplant may be in my future. While modern medicine is saving lives at such a young age, it comes at a huge health cost as former preemies get older--docs still do not know much of what is to come. A small study found that at 19 yrs old, many former preemies had signs of emphysema, common to people decades older. I am trying to find the best research & university settings for the former preemies/ lung disease connection. However, I am so grateful for the life I have lived so far; what else can I be? take care.