Sunday, April 5, 2009

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.

****

Hi Stacy,

My name is Steve Laurie and I got your name and contact info from Helen Harrison and wanted to email you and introduce myself. My twin brother (Tim) and I were born at 25 weeks back in 1980 and have miraculously survived with few complications due to the prematurity. I am now a graduate student at the University of Oregon studying lung function and one of the aims of our lab is to look at adult survivors of bronchopulmonary dysplasia. This follow-up work has not been studied and we are interested in the lung function of these individuals.

We are currently recruiting subjects to participate in our study (see attached flier) and would like to see if is possible to post our flier on your site. I am also trying to send an email out through the former preemie yahoogroup.

Please let me know if this is something we could do or if you have any questions regarding what we are doing, how we are doing it, what we hope to accomplish or even just questions about my story as a preemie.

Please do not hesitate to contact me via either email or phone, I look forward to hearing from you.

Thanks so much,
Steve


--
Steve Laurie
Department of Human Physiology
University of Oregon
Eugene, OR 97403
slaurie@uoregon.edu
541-346-0822 (lab)

******

I then asked Steve to comment on his outcome with regards to his own prematurity. Here is his reply...

****
Hi Stacy,

Thanks for the reply! Our lab has a number of things we work on surrounding lung function, some dealing with preemies, other aspects that do not. Currently there are three grad students in my lab and while we each have a project that is "ours" that we each head up, we all work together on all of the projects. Technically speaking, the preemie project is not mine, although all that really means is that when it comes to the contact person it is Ximeng (pronounced Simon), who sits right next to me in our office :) That being said, I obviously have a keen interest in the success of the project and so am doing whatever I can to get it up and running. Once the actual data collection begins, we all contribute to all the projects because they are such an undertaking.

Additionally, we are working on putting together a study to look at lung function of preemies that are still kids (5-15 years old) and see if putting them onto an exercise program can help their lung function before going through maturity. This project is still waiting for approval from our human subjects committee, but as that develops, I will let you know.

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.

I graduated from UC Davis in 2004 with a degree in exercise physiology, my brother from Loyala Marymount University with a degree in television production. I am actually a long distance runner and was a 2x All-American while in college, but have since moved up to the marathon where I just missed qualifying for the US Olympic Trials in 2008. I hope that parents of new preemies can see how lucky my brother and I have been and maintain hope that their preemies, despite the odds against them, can turn out healthy and have extraordinary lives too.

****
Here is the flyer that was attached...

Classroom and On-line flyer

Subject Recruitment

Paid Pre-term Research Subjects Needed.

Study population:

Healthy, non-smoking males and females age 18-49 yrs. Subjects born preterm (<32 weeks gestational age) with or without Bronchopulmonary Dysplasia, males and females age 18-49 yrs.


Study description:

This study is designed to examine long-term heart, lung and breathing outcomes resulting from preterm birth. It will be conducted over the course of 4 visits. First visit will involve resting saline contrast echocardiography to examine your heart, an array of lung function tests, and a VO 2max test. Second visit (for study population only) will test your lung function before and after administration of a fast acting bronchodilator. Third visit will involve total lung volume measurements, breathing gas mixtures with varying concentrations of oxygen and carbon dioxide, and a lung diffusion capacity test. The final visit will involve two exercise tests breathing different levels of oxygen, arterial blood samples and saline contrast echocardiography will be performed to examine heart and lung function.


Relevance to subjects born premature:

It is our hope that this study will provide a fundamental understanding of the long-term heart and lung outcomes of premature birth.


Study Location:

The study will be conducted in the University of Oregon, Department of Human Physiology, Cardiopulmonary and Respiratory Lab, located on the 2nd floor of the Center for Medical Education and Research Building (722 E. 11th st.) on the Sacred Heart Medical Center campus.


Subjects will be compensated for participation in this study.

If interested, please contact


Ximeng Yang B.S.

xyang1@uoregon.edu (541) 346-0822


Andrew Lovering Ph.D

lovering@uoregon.edu (541) 346-0831


Department of Human Physiology

1240 University of Oregon 122 Esslinger Eugene OR 97403

19 comments:

Anonymous said...

Helen Harrison writes:

Hi, Steve, and hi to your brother Tim and your mom and dad!

I am so glad that lung function is being looked at, and wish I could bring Edward up to your lab, but I doubt that he would cooperate with the testing -- at least to the point of providing useful information for the study.

Lung and cardio problems were the least of our worries after he left the NICU -- but by age 30 or so he began having pneumonia as a complication to just about everything. Last summer he had a heart attack while in the ER at UCSF for pneumonia, and since then he has had a great deal of trouble breathing (lots of coughing) sleep apnea (just diagnosed) and major night sweats.

His MD thinks that he is unable to expand his lungs properly because of all the adhesions in his abdomen from previous shunt and bowel surgery.

I'm wondering if you know a good pulmonary person in the SF area with an interest in preemies? I think Ed should be seen, though I doubt he'd be a good candidate for your research. What sort of lung evaluation would you recommend for him?

Thanks so much for everything you are doing!

All the best,

Helen

Steve Laurie said...

Great to hear from you Helen, although I'm sorry to hear about the trouble Edward has been having lately. I unfortunately do not know anyone in the SF area as all of my contacts are located up here in Oregon.

Regarding lung function tests, comprehensive spirometry tests (maximal inhale, followed by maximal and complete exhalation) can reveal compromised function on both the inspiration and expiration sides of breathing, but there isn't much that I am aware of that can be done to help with the physical problems associated with the adhesions.

The primary lung function test that we will be looking at in our studies are flow-volume loops during exercise. We hypothesize that due to the hyperoxic exposure during the first days/weeks/months after being born, complete lung development may be halted early resulting in incomplete development of the air sacs in the lung. Consequently, reduced lung function becomes evident, especially during exertion. Additionally, we will be looking at the efficiency of gas exchange in the lung and thus the subjects will have an arterial catheter placed in their wrist while they are exercising. So ultimately we are looking for subjects who can exercise to some degree, even if their capacity is significantly reduced.

Sorry I can't be more of a help.
Take care,
steve

Anonymous said...

Helen Harrison writes:

Thanks for your response, Steve.

I hope everyone in your lab is looking at steroid exposure as well as oxygen.

Here are excerpts from a letter to Pediatrics written back in 1991, by Lee Frank, MD, PhD of the Pulmonary Research Center in Miami:

"To the Editor:
"The distressingly high incidence of bronchopulmonary dysplasia in today's very low birthweight population and the prolonged morbidity and tumultuous clinical problems associated with BPD have led to a trail usage of dexamethasone treatment to try to assuage these problems...

"As one who is uneasy about the continued use of dexamethasone [a steroid] in clinical trials...especially when nearly all the clinical trials to date have not demonstrated a meaningful sustained beneficial effect of dexamethsone treatment -- I feel it necessary to emphasize two major points about possible detrimental effects of glucocorticoids [steroids] in oxygen requiring infants...

"First, the evidence garnered from studies in a variety of species consistently indicates that pulmonary oxygen toxicity is worsened...by concurrent treatment with glucocorticoids.

"Additionally, normal repair of oxidant-induced lung injury by coordinated specific lung cell proliferation is altered by glucocorticoid treatment.

"Second, the exposure of neonatal animals to hyperoxia alone is associated with inhibition of normal lung growth and development. Specifically, hyperoxia produces marked impairment of the normal alveolarization process which serves to greatly expand the surface area of the lung for respiratory exchange function.

"Likewise, dexamethasone treatment of neonatal animals (even at low doses...)produces a very similar severe inhibition of normal lung surface area expansion...[which is] pronounced especially when the lung is normally in its most active phase of morphological development. [equivalent to the
25th to 28th weeks of human gestation -- a time of accelerated growth and septation of the large immature air saccules into smaller true alveoli)."

Dr. Frank goes on to describe the autopsied lungs of a 3 year old preemie with BPD which found the respiratory exchange area to be only 1/3 to 1/2 of normal.

Dr. Frank concludes that in O2 requiring infants steroid treatment could have additive inhibitory actions on the alveolarization process.

I believe subsequent research has borne this out, although debate continues on whether or not steroids should be used, and if so, how?

I hope you will try to collect some data on steroids, although many preemie-adults may not know at this point if they were exposed.

Best wishes,

Helen

steve Laurie said...

Helen,

Thanks for the info regarding dexamethasone, we will definitely look into. Of course you are correct that trying to track down medical records from that long ago is difficult. I actually haven't been able to find my own records and think that they have been destroyed.

steve

Anonymous said...

Helen Harrison writes:
Steve,

Have you tried getting a NICU chart summary from your former pediatrician? This may be the best bet.

We did this with Ed and it worked -- didn't have to pay a cent either.

Helen

Anonymous said...

Helen Harrison writes:

I would really be interested in hearing from more of you about your children's lung problems (or lack thereof).

We seem to talk about brains a lot on this blog, but there are other citical organs (lungs, livers, kidneys, and more) that are affected by prematurity.

Would anyone else like to weigh in on this?

Helen

Anonymous said...

Helen,
I was wondering the same thing. My son, 24 wker, left the NICU in 2002w/ moderate BPD. Fast forward to now, 7 years later and his current pulmonologist is looking at dismissing him as a patient and have his pediatrician follow him because he's doing well. What is the protocal to follow these kiddos? We use to get chest xrays every two years but that stopped and he's had lung function tests. They are either coming out normal or normal for him. So, what should I do? Are there certain tests I should have them do on him or what monitoring should be done? I am curious what are others doing to monitor their children's lung diseases? Thanks Helen for you insight.
-Tammy-

Val said...

Wow, I wish I lived in the area, bcz I'd be thrilled to participate (hopefully providing some good data for future use)...
But if Steve's records were destroyed since '80, I'm sure mine must be LONG gone (from '64).
I was a 28-wk, 2 lb 6 oz preemie & I know I've never had good lung capacity for endurance (although I've been a SLOW recreational jogger, off-n-on, for the past 20 yrs) - my own personal history is also complicated by apical lobe scarring secondary to radiation treatments I received for thyroid cancer in '89. I'll be curious to follow the outcome of this research.
Yours truly,
Val J.

Pia- Staph infection said...

This is really great website. I like how you have presented the information in full detail. Keep it up!

Anonymous said...

Tammy,

Glad to hear your son is doing so well! While a chest X-ray may not show anything of interest, comprehensive spirometry will show decrements in lung function that can be tracked over time.

Please feel free to contact me if you'd like to discuss things further - slaurie @ uoregon.edu

steve

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kalli said...

Hi Steve,

I wish I lived closer to participate in the study. I live in Southeast Missouri. I'm a preemie adult. I was four months (July 24 was my due date, I was born on March 31st) weighing 1 lb 8 oz. I stayed 6 months in the MED (Memphis TN). Like another preemie, I cannot do endurance, I wish I could run, I have a black belt in TKD.

I would like to see effects of preemies (which could be individual) as well, like neurological, emotional, psychological effects of being an adult preemie.

In the future, I am going to see if I am able to have children, I have no idea, and would like to know just in case. I am married, and 'normal', I'm legally blind 40/60. I also have some gastointestinal issues( nothing worth looking into), and had a lot of orthodontic work done (thanks to the tube).

I know preemies are different, have different things going on, so I think it would be interesting.

Thanks for what you are doing and I would love to read the journal article when/if you present it.


Blessings,

Kalli

Anonymous said...

Hi I just wanted to post about when I was born. I was born about 4 months early and weighed 1.4 pounds in 1984. When I was born the doctors told my mother not to get attached to me because I would most likely not live through the night and if I did I would be either a vegetable or mentally challenged. Luckily none of the expected happened! I am happy to say I proved the doctors wrong i am 26 worked as a fire fighter, served in the army and am now a full-time student. But I am curious to know whether some things that ail me are due to me being born so early?

Anonymous said...

This is so cool! I was almost 3 months premature, but fortunately suffered no damage (other than some very glamarous scars on my stomach). However, I have been worried about the long term affects on peoples health. It is very reassuring that there is research doing done on this topic.
Thank you.
=D

lacyblupi said...

Hi all!
My name is Lacy Lupi and I was born 3 1/2 months premature at Thomas Jefferson Hospital in Philadelphia. I was merely 15 ounces at birth and had severe pulminary issues, most notably bronchial dysplasia, RSV and many collasped lungs in which required chest tubes. I spent much of my adolescence in CHOP ( Children's Hospital of Philadelphia. Majority of my life I have suffered with severe asthma and was plagued with many related illnesses as a child.Days after my birth my parents were told that I would be blind and deaf, fortunately I am neither. However, I do still show very small traces of cerebal palsy. In addition, I had many developmental disabilities as a child. Presently, I am 27 years old in good health and teaching special education in Camden, NJ. Due to the fact that I teach in a very low income area many of my students are former preemies who often present many physical and academic challenges that most often hit too close to home. If I can be of any service please let me know. I live in the South Jersey area, about 15 mintues away from Philadelphia. I can be reached at lacyblupi@gmail.com.

T Sawyer said...

I would suggest that ANY 'preemie' be advised to carefully monitor their health issues thoughout their lifetime. My BPD was not diagnosed for almost six DECADES (I'm now 64) ... but it has now shown up WITH A VENGENCE.

I had been a frequent blood donor; and it first began to show up with denials of blood donations for 'low iron' ... then bouts of sleep apnea ... that was almost ten years ago, and during all those previous years I had a vague feeling that something was just not quite right.

Caution ANY preemie to be on the lookout for problems!

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