Congenital Diaphragmatic Hernia (CDH): Michael Jr.’s Story

During an ultrasound appointment 17 weeks into her pregnancy, at a hospital near her Washington Township, NJ, home, Wanda could tell something was wrong.

“The technician kept looking at the image and seemed concerned,” she recalls nearly 20 years later. She soon learned why: Her baby had a congenital diaphragmatic hernia (CDH), a life-threatening condition in which there’s a hole in the diaphragm. Abdominal organs can pass through this hole and move into the chest, preventing the lungs from developing normally. The physician recommended terminating the pregnancy.

Wanda was devastated. She and her husband Michael had already suffered two miscarriages.

“It hurt because we had lost other children and we were getting older,” says Wanda. “I was 37 and really wanted to have a child.”

Finding hope at CHOP

Wanda pressed the physician for further options. He suggested contacting The Children’s Hospital of Philadelphia, where a specialized fetal diagnosis and treatment program was in the early stages of creation.

“CHOP gave us hope,” recalls Wanda. “They gave us options.”

A comprehensive evaluation at CHOP’s newly created Center for Fetal Diagnosis and Treatment — one of the first fetal programs in the world — confirmed the diagnosis and ruled out associated anomalies and genetic conditions. After discussing all of the options available, Wanda underwent weekly monitoring for the duration of the pregnancy. The plan was for their baby to have postnatal surgery to repair the defect. After delivery, the baby would spend time in CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) until he was stabilized and strong enough to undergo the repair.

At 36 weeks, Wanda delivered Michael Jr. naturally at the Hospital of the University of Pennsylvania, which is connected by a passageway to CHOP. Today, thanks to the creation of the Garbose Family Special Delivery Unit — the world’s first birthing unit within a pediatric hospital dedicated to healthy mothers carrying babies with serious and life-threatening birth defects — babies like Michael Jr. can be delivered at CHOP, keeping moms close by after birth. After two surgeries to fix the hole in his diaphragm and 40 days in the N/IICU, Michael Jr. was able to go home.

Defying expectations

From the start, he defied expectations.“They said he would have to go on ECMO (extracorporeal membrane oxygenation) — he didn’t need the ECMO,” says Wanda. “They said he would be in the Hospital for three to six months after he was born — he was only there for 40 days.”

Michael Jr. has had some respiratory problems as a result of his smaller-than-normal lungs, but otherwise he thrived. He is now a senior in high school and plays percussion in his school’s marching band. Last year, the band traveled to San Antonio and performed during the Alamo Bowl halftime show.

“My favorite thing is to play basketball and sometimes I play football for fun,” he says. “I also like to hang out with my friends.”

Michael now has his sights set on a career as an electrical engineer.

“I am very, very proud of him. He’s growing up, becoming a young man,” says his dad. “It’s amazing, what he went through. He brightens up my day.”

“I feel blessed,” says Wanda. “Look where he was and look where he came to. Michael made it here, thanks to the CHOP doctors. They did a wonderful job.”

 

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