Congenital diaphragmatic hernias in babies

It's a condition that's as common as Spina Bifida or cystic fibrosis, but you've probably never heard of it.

Congenital diaphragmatic hernias occur in about one in every 2,000 births.

They can be deadly, but now doctors are using a more aggressive treatment approach.

Two-year-old Lincoln Olds is happy and active today.

"He's just a really fun kid,” his mom Dorothy says. He likes to make people laugh."

But when his mom was pregnant with Lincoln - an ultrasound revealed a devastating diagnosis.

"We just wanted to know if we were having a boy or a girl, that's what we went to find out, and they told us that our child might not survive."

Lincoln had a congenital diaphragmatic hernia - essentially - a hole formed in his diaphragm.

"The intestines as a result of that go up into the chest, and they grow within the chest and actually prevent the lung from developing normally,” explains Dr. Brad W. Warner, Surgeon-In-Chief at St. Louis Children’s Hospital. “If they make it to delivery, and they're alive, the survival rate is still about 60 percent."

Lincoln was placed on a life support machine known as ecmo - to give his body a chance to rest and oxygenate.

At first he didn't respond. But after 12 days, Lincoln was breathing better. He then had surgery to reposition his organs and repair his hernia. After 83 days in the hospital, Lincoln went home. Doctors expect him to live a normal life - and be a normal kid.

Lincoln is small for his age.

Because he breathes faster, his body requires more calories, so getting him to eat is important.

He also takes speech and occupational therapy to address some of the complications of the condition.

Children with these types of hernias sometimes develop heart failure, scoliosis, hearing difficulties, and developmental delays.

MEDICAL BREAKTHROUGHS
RESEARCH SUMMARY

TOPIC: HERNIAS IN NEWBORNS: LINCOLN'S STORY
REPORT: MB #3748

BACKGROUND: A congenital diaphragmatic hernia (CDH) is a birth defect that occurs in about one in every 2,500 live births. It's a condition in which a hole in the diaphragm allows abdominal organs to move into the chest, blocking the development of the lungs. The hole develops very early on in fetal development, and most commonly occurs on the left side of the body. The condition can be life-threatening if not treated, because the lungs cannot provide enough oxygen support to the body. However, the survival rate is about 70 percent. (Source: The Children's Hospital of Philadelphia)

CAUSES: There are many factors that contribute to the cause of CDH. Genetic and environmental factors both play a role in causing CDH. Some doctors think multiple genes from both parents create an unfortunate genetic combination which contributes to the development of the hernia. About 40 percent of CDH cases are associated with other birth defects, the most common being a congenital heart defect. The CDH is repaired after the birth. but in severe cases, if the liver has moved into the chest fetal therapy may be offered (Source: Columbia University)

NEW TECHNOLOGY: An ECMO machine, which stands for extracorporeal membrane oxygenation, is now being used to treat CDH. A catheter is placed in a vein and an artery to give cardiac and respiratory support. The amount of time the infant can stay on ECMO varies, depending on the condition and the recovery of the heart and lung functions. The maximum amount of time is usually two weeks, but some cases have gone longer. Complications from being on the machine include bleeding, infection, stroke, transfusion, or mechanical failure of the equipment. There are a variety of ECMO support groups online which help parents with the complications of having a child on the device. There is also a handy map of ECMO centers all over the world: http://batchgeo.com/map/d4b2377b0b3e2947ab91d80e0ae11423 (Source: www.uwhealth.org)

FOR MORE INFORMATION, PLEASE CONTACT:

Jackie Ferman
jferman@bjc.org
Manager, Media Relations
St. Louis Children's Hospital
(314) 286-0304

If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com


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