Saturday, June 27, 2009

God Finds A Way

Adam Michael was born on June 27th, 1988. He weighed over seven pounds and had a head full of dark hair. This pregnancy was the third for my mother, who already had my older brother and myself. There was no need for concern in the months that led up to delivery. But then, pregnant women didn't receive routine ultrasounds at that time either.

Adam came into this world a perfectly beautiful baby boy. He was whole and just as a baby should be when born. Except he wasn't fully whole on the inside. Congenital Diaphragmatic Hernia is birth defect that effects 1600 babies in the US alone. The diaphragm, which normally closes in the third month of pregnancy, fails to completely form. This hernia then allows bodily organs to extend up into the chest cavity. More often seen on the left side of the body, the intestines and stomach enter up into the cavity and prevent the lungs and heart from forming properly. This was the case for Adam. His heart was pushed to the side and his lungs (which develop late in utero) were not developed enough to allow him to breathe well. Adam died shortly before 1 day old. He would have been 21 today.

God has touched our whole family with Adam's presence. I am still being touched today as I have brought my own son into this world. Jackson's middle name was in honor of my brother. Jackson Adam. Becoming a mother of my own makes me feel the impact in a whole new way. He was miracle baby because he was conceived after my mother's tube ligation. God finds a way!


Search and Resource:

Twenty years ago, there were no screening tests to detect a disorder such as congenital diaphragmatic hernia. Thanks to today's research and funding, the success rate that was once 0% in 1988, has dramatically risen.

Sited from a website for Shands Health Care

"CDH is a life threatening birth defect in which the diaphragm does not completely form, allowing some of the contents of the abdomen to protrude into the chest and hinder the normal growth of lung tissue. CDH affects approximately one in 3000 babies, and the national survival rate for babies born with CDH falls between 50% and 65%.

Dr. Kays and the pediatric surgery faculty at the University of Florida have a 92% SURVIVAL RATE for CDH babies born at Shands. He credits much of their success to being at the right place at the right time, to the "gentle ventilation" technique that they use, and to his training from Drs. Charlie Stolar and Jen Wung at Columbia University. He also acknowledges the critical support and guidance he has received from Drs. James L. Talbert, Professor Emeritus and Dr. Max R. Langham, Jr., Professor and Chief, Division of Pediatric Surgery."

While not all babies are eligable for the procedures that Shands offers, we have to rejoice that there have been medical advancements.

I read a story of a mother who opted for an experientmental operation. You can read this story in Chicken Soup for the Expectant Mother's Soul, pg. 133, Miracle Baby. At the Fetal Treatment Center at University of California San Francisco - in Feb. of 1996, the mother underwent orthoscopic surgery in attempts to help the lungs form. She was 28 weeks along.

Here was the idea behind the operation:

"As babies develop inside the uterus, fluid forms in their lungs and flows out their mouths, contributing to the amniotic fluid that cushions and protects the growing fetus. Dr. Harrison proposed to use this very fluid to help the mother's baby's lungs grow bigger. The surgeon would temporarily close off the baby's trachea. The fluid would then build up inside his lungs, and the mounting pressure would cause them to expand like inflated balloons." pg.134-135

Dr. Harrison was able to use a sonographer to maneuver the baby face up and began his procedure orthoscopically. He proceeded to cut into the baby's throat and clamp his trachea with a titanium clip. The clamp would need at least 7 weeks to heal and allow time for the lungs to expand. While the mother and baby did have a few complications afterwards, the baby was born nine weeks premature. Baby Samuel did survive and is a healthy baby boy today.


Holly said...

It's truly amazing how the advancements in medicine have helped so many people. I know a few mommas whose babies had CDH. Some made it and some didn't. I'm sorry you brother didn't.

AFD said...

Happy Birthday Adam! Your sister is an amazing friend and mother.

Linda said...

April, daughter Lynnette's baby Josiah was born with that. He had surgery right after birth and lived 5 days and then he died.

They didn't catch it before he was born. He was a big healthy looking baby boy and it was a total shock when he couldn't breathe when he was born.

I am sorry about your brother. It is a nice tribute to name your little guy's middle name after him.

I hope they keep making advancements in this area so that they can save these babies lives.

Love, Linda @ Truthful Tidbits