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Congenital Diaphragmatic Hernia (CDH) Patient | Women & Infants

Maddy, a congenital diaphragmatic hernia patient, smiles for the camera

At 20 weeks gestation, Angie and Eric Levy were anxious to find out if their first baby was a girl or a boy. Yet, the news the young couple received during a routine ultrasound appointment was devastating.  The Levy’s learned their baby had right sided congenital diaphragmatic hernia (CDH).

Angie and her husband Eric were frightened about the future of their first baby.  A family dinner had been planned that night to announce if the young couple was having a girl or boy.  Instead, the dinner was postponed.

Angie was especially concerned about the diagnosis because she is a nurse in the newborn intensive care unit at St. Louis Children’s Hospital.  She also has a friend who had a baby with CDH.

From that point forward, the Levy’s meet with many specialists to monitor their baby girl’s progress until the day Maddy was born at Barnes-Jewish Hospital.

Determining Treatment for CDH

A fetal MRI was scheduled to confirm the diagnosis.  With help from doctors results were shared that same day. A meeting took place with the surgery team to go over the diagnosis and outline the course of treatment along with reasonable odds of success. 

 Follow-up visits with the cardiology team were scheduled and the soon-to-be parents meet with the surgery team again to review what they could expect during the delivery, in the newborn intensive care unit (NICU) and the surgery their baby would need.  Typically, expectant parents would also receive a tour of the NICU, but Angie took her husband through the unit herself to acquaint him with the facility where she cares for hundreds of babies.

Now, it was a waiting game for the St. Peters, MO, couple.

Surgery for CDH after Birth

Angie was scheduled for an induction, however at 38 weeks, her water broke.  She tried to labor, but when doctors feared infection, a Cesarean Section was performed.  Maddy was here.

Angie saw and touched her baby girl before the Transport Team and surgeons took her the short distance to the NICU at St. Louis Children’s Hospital.  Angie and Eric visited their daughter every day and were encouraged to stay as long as they wanted. 

On the third day, just as they were apart to depart for their wheelchair ride from Barnes-Jewish Hospital to St. Louis Children’s Hospital, Maddy’s surgeon Dr. Brad Warner called with news:  Maddy’s lab values indicated that the best time for the surgery would be the next day.

“The surgery was short, but it felt like forever,” Angie said.  “Maddy experienced some bad days, and we were there all hours of the day and night.  We were at her bedside, enjoying every Maddy and CDH Teamminute of her since we didn’t know what the future might hold for her.”

The surgical team examined Maddy daily and took the time to include both Angie and Eric in her care plan on a daily basis.  Although her liver had been above her diaphragm, there had been no organ damage. And, her heart was perfect.

Now a Healthy 4-Year-Old

Maddy went home on day 33.  Maddy has been back for follow-up appointments with the surgical team on a yearly basis.  During her last yearly follow-up with the surgery team at St. Louis Children’s Hospital she was told she was going to be treated like a normal, healthy 4-year-old child.

Today, Maddy is a healthy 4-year-old, and she has a brother named Adam and baby sister Valerie.

“There are lots of facilities across the country that deal with CDH patients, but I wouldn’t have taken Maddy anywhere else,” said Angie.

Find a doctor or make an appointment: 866.867.3627
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St. Louis, MO 63110
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