St. Louis doctors write book to help families understand complex disease in babies

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ST. LOUIS – Complex medical conditions are often hard to understand, but now a first-of-its-kind book is helping families whose babies face a rare and very serious disease. Congenital diaphragmatic hernia (CDH) is a condition most people have never heard of but St. Louis Children’s Hospital is hoping to change that.

CDH is usually discovered when a woman is about 20 weeks pregnant. The diaphragm is a muscle that divides the chest cavity from the abdominal cavity. The diaphragm of a CDH baby doesn’t develop completely.

The abdominal contents including the stomach, liver, bowel, spleen, and sometimes the kidney, herniate into the chest cavity. The lungs and heart don’t develop completely and normally.

Children who survive this disease often have a hard time explaining their journey to others.

Siblings don’t always understand the complex medical journey. When doctors at St. Louis Children’s Hospital looked for a book to explain this condition, they couldn’t find anything. So, they decided to write their own.

“The Boy with the Turquoise Ribbon” is the first of its kind book talking about a child’s life with CDH. All of the proceeds from the book go to the hospital.

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