Kyle's NICU Story in Pictures

Sunday, April 20, 2008

Article in the Houston Chronicle

The article below is interesting.  One of the Drs was one of Kyle's docs.  I mentioned him before.  It is hard to read stuff like this b/c I know they are trying to help parents but what if we had chosen not to try with Kyle - b/c we feared his hard road.  or b/c we feared the future for us.  No parents wants their child to suffer - but wow - I don't think there is an answer to this one.  at least not a right or wrong answer anyway.

Your baby is born, you are given horrifying statistics that are meant as predictors of their life and quality of life.  and I get that we believe in God as a healer - but we use statistic everyday in everything - so do we believe them?  they are a part of the natural world so if we do are we giving up the supernatural?  Just questions - not really looking for answers.  I am learning so much still about faith and what that truly means.  That it really is the substance of things HOPED for and the evidence of things not seen.  meaning I can't know the outcome - faith is not knowing - faith doesn't even seem like the same thing as believing to me.  b/c believe me - I have bowed my head squinted my eyes, strained my head, begged God until I vomited, cast away doubt in the name of Jesus and my "wish" or "want" or "prayer"... "desire"... was still not granted.  God really is in control of all this and we really do have to have faith - we really do have to hope for things and trust in things we can not see and maybe will not see.  So all this to say I think it is AMAZING that the doctors have taken the time and energy to gain this information.  I think it is beneficial and helpful to the parents to know what their little lion may be up against.  But... wow... what a responsibility as parents to faith.  what a call to trust our Father in heaven when we can not see how our child could possibly be that 3%.  When there is 97% stacked against him. or whatever percent you are. I guess it is the doctors job to give this information to parents and i think it might be our job - as followers of christ - to give the hope to these parents - to remind them of truth - to remind them of faith.  There were those who did this for me - someone has done that for all of us.  B/c God has sent his spirit to live within us - we must do this for others.  We must be joy and hope and life and faith and light.  here is the article and below I have shown kyle's outcome on the calculator - it is actually better than what we were given the day he was born but they also thought kyle might be younger than 23 weeks.  again - kyle has obviously been rescued by God.

April 16, 2008, 11:35PM

New way to assess preemies' chances

Calculator considers factors like sex, weight

Copyright 2008 Houston Chronicle

Doctors and parents facing anguished decisions about the treatment of very premature babies will now have better information thanks to an online calculator that emphasizes more than just how long the infant was in the womb. The statistical tool is based on a study led by University of Texas Medical School at Houston researchers, who found factors such as weight and gender also strongly influence outcome when babies are at the fringes of viability.

"This was born of some degree of frustration that we can't give these parents a better sense of their baby's chances," said Dr. Nehal Parikh, a UT-Houston professor of pediatrics and one of the study's authors. "At such sensitive times, it'll mark a significant improvement to be able to share evidence-based data about how infants on average fare."

The calculator furnishes estimates of risk based on data from the study. Doctors (or parents) plug in five total factors and the calculator determines the likelihood of such a baby surviving, as well as the odds of him or her having moderate or profound impairment.

The factors, besides gestational age, birth weight and sex (girls fare better), are whether the mother received prenatal steroids to help fetal lungs mature and whether the infant was a single delivery rather than one of twins or more.

The study, published in today's New England Journal of Medicine, looked at babies born 22 to 25 weeks after conception, the tiniest, frailest category of pre-term infants. About 15,000 such babies are born annually, and they require aggressive intensive care to be kept alive.

Many nevertheless die soon after birth, while some survive and reach adulthood, pretty much unaffected. The rest experience some disability, ranging from having to wear leg braces to severe cerebral palsy and profound intellectual disability.

Current guidelines give odds of survival based solely on gestational age, though many doctors said they tell parents the likelihood may be better or worse. They acknowledged, however, that the adjustments they make are more intuitive than scientific.

In addition, the study suggests the factors may be more significant than doctors had thought. It found that a baby born at 23 gestational weeks would have the equivalent chance of one born at 24 weeks if the sex were female, the mother got steroids, there were no other babies born alongside, or he or she weighed an additional 2/10 of a pound. More than one of the factors in the baby's favor increases the equivalent age slightly.

"Until now, all we knew was survival data based on gestational age," said Dr. Eric Eichenwald, a Baylor College of Medicine pediatrician and the co-author of a commentary that accompanied the paper in the journal. "Even if many doctors already told parents that these other factors influence outcome, I think this shows they have a bigger effect than most would have thought."


No recommendation

A number of doctors said the new information would give parents a better sense of the possible burdens of intensive care.


But no neonatologists interviewed said they thought the new information would result in more decisions to provide only comfort care to the baby, to not pursue the sort of aggressive therapy that might save him or her but is also painful. The study makes no recommendation of when aggressive care would be inappropriate.

Parikh said that is a decision for individual parents and doctors to make. Currently the odds of survival are so long for infants born in the 22nd week of pregnancy that it is not uncommon for only comfort care to be provided. Infants born in the 25th week, on the other hand, routinely receive intensive care.

But as long as a doctor tells parents there is a chance the baby will survive, the vast majority want everything done, said Dr. Daniel Batton, a member of the American Academy of Pediatricians' committee on fetus and newborn.

"I don't think this new study is going to change that," said Batton, whose committee is working on guidelines that will incorporate the study. "I think this is an important study that pulls information together into one package and will stimulate conversation, but I don't think it'll change parents' decisions."

The study of 4,446 infants found 49 percent died and 21 percent survived without a disability. About 12 percent survived with significant impairments such as blindness or cerebral palsy, and another 12 percent had more severe disabilities.

The study was conducted between 1998 and 2003 at a network of academic centers, including Memorial Hermann Children's Hospital in Houston, with the most advanced neonatal care facilities.

Researchers stressed they don't know yet how well the calculator's data will translate to less sophisticated hospitals. They called for parents scheduled to deliver prematurely to go to academic centers if possible because they so improve outcomes.

The National Institute of Child Health and Human Development provided funding and researchers for the study.

Estimated outcomes* for infants in the NRN sample are as follows:

OutcomesOutcomes for All InfantsOutcomes for Mechanically Ventilated Infants
Survival Without Profound Neurodevelopmental Impairment7%11%
Survival Without Moderate to Severe Neurodevelopmental Impairment3%5%
Death or Profound Neurodevelopmental Impairment93%89%
Death or Moderate to Severe Neurodevelopmental Impairment97%95%


Anonymous said...

Not all intellectual disabilities are bad as they sound. I wasn't a premie and I have a math learning disability, which was discovered after failing college math at SHSU.
Charlotte Efird

The Hull Munchkins said...

Wow, that is heavy stuff to read, especially having had a micropreemie. It's like watching your worst night mare unfolding again, remembering what my little 23 wkr went through... and is still going through.

Even though our family is living the "negative odds" of prematurity, we still see God's hand moving through Abby. It hurts. It hurts everyday, but we have hope that our heavenly Father will work this experience and Abby's struggles out for His glory and for our good. Because we trust in Him and in His goodness.

Knowing this somehow doesn't make the heartache any less painful though.

Kyle is doing so well! I enjoy reading his updates and seeing pics of him.

Anonymous said...

I am truly amazed by the statistics that it spit out based on our son's information... I wasn't given nearly that grim of a picture when he was born. I mean, I knew it was serious and it wasn't good, but I thought he had a MUCH better rate of survival than that which the calculator gave him. Even at that, we have to remember that statistics are just numbers. It doesn't take into account how many of those babies studied were coming b/c of a lifestyle choice of the mother or anything else that would give the baby a worse odd to start... And you are right - you just have to have FAITH.

-Kelly (mom to Mason - 25wker)

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!