Mila’s Story: Congenital Diaphragmatic Hernia (CDH) and FETO Procedure

From Diagnosis to Delivery – and Beyond

World-renowned care for rare fetal abnormalities at the Cincinnati Children's Fetal Care Center is what brought Maddie Zito to us for prenatal care for her unborn baby Mila.

“When I found out Mila had congenital diaphragmatic hernia (CDH) during a routine anatomy scan, everything changed,” said Maddie. “We decided to come to Cincinnati for care almost immediately.”

CDH occurs when there is a hole in the baby’s diaphragm (the muscle that separates the chest from the abdomen). When this happens, contents from the abdomen migrate into the chest, which crowds the lungs and prevents them from developing normally.

Dr. Foong-Yen Lim, surgical director at the Fetal Care Center, understands why families come to Cincinnati for care.

“We have a long-standing team that is dedicated to taking care of babies with CDH. This is different from a lot of other hospitals, where you’re getting care from whomever is the doctor on-call that day,” said Dr. Lim.

An Innovative Answer

When Maddie returned to the Fetal Care Center for her 30-week prenatal check-up, a routine ultrasound revealed that Mila’s CDH had become severe, and met criteria as a candidate for fetoscopic endoluminal tracheal occlusion (FETO), a breakthrough procedure currently under investigation as research protocol, that may help improve lung growth before birth. 

“Mila’s odds of survival without the procedure were not good,” said Maddie. “We wanted to try everything we could.”

The Fetal Care Center is one of the few places in the nation to offer this minimally invasive procedure that involves inserting a tiny balloon into the fetus’ trachea. Performed by one of the most skilled and experienced teams of physicians in the world, this was Mila’s chance at survival.

“In severe cases of CDH, the survival rate is ranging from less than 20% to 50%, but with FETO, we’re seeing a huge improvement in odds of survival,” said Dr. Lim. “Right now, it looks like survival rates as high as 90% are possible, but we’re still learning.”

Maddie and Mila underwent the FETO procedure after extensive evaluation and counseling, and the entire family stayed in Cincinnati until Mila was born.

A Two-Part Solution

“The FETO procedure has two parts, so it’s important for mothers to stay near us between the procedures,” said Dr. Lim.

First, a balloon is placed in the unborn baby’s trachea or windpipe. The balloon blocks the trachea and remains in place for a few weeks. This allows fluid produced by the lungs to build up below the balloon and that may help the lungs to grow.

After several weeks, the balloon is removed in order for the lungs to mature and to allow the baby to breath after birth.

This is just how the process worked for Maddie and Mila. Once the balloon was inserted, Maddie stayed near the hospital for weekly ultrasounds and to monitor Mila’s heart rate and well-being. One of the fetal nurses called every day to check in.

“They did a phenomenal job of preparing us for what was coming and calling constantly to check in and make sure we were comfortable with everything,” said Maddie.

Care Continues Beyond Delivery

After the FETO procedure, healthy mothers like Maddie deliver at Cincinnati Children’s. Our Special Delivery Unit is located inside one of the best pediatric hospitals in the world on the same floor as our top-ranked NICU.

“Mom is near her baby after delivery,” said Dr. Lim, “And the baby is not subjected to the risk or stress of transportation or travel from one hospital to another.”

With 24/7 triage for all delivery types, the Special Delivery Unit allows healthy moms whose babies face complex conditions like CDH to recover right down the hall from their babies.

Care continues after delivery. From the moment the baby is born, they are surrounded by the expertise, excellence, and exceptional care that only Cincinnati Children’s NICU and CICU can offer.

For Mila, this made a huge difference. After more than three months in the NICU, her parents brought her home. But then things took a turn for the worse.

 “After 17 days home, she wasn’t doing so hot. So we came back for her surgery, and she’s been doing fantastic ever since,” said Maddie. “Oh and here’s the most amazing part! Mila came home both times from the hospital without being on oxygen. This is so rare for kids with her condition, and we think it’s because of the FETO.”

Dr. Lim agrees, saying, “With FETO, we find that a higher number of patients with severe CDH are able to go home without oxygen supplementation and their overall length of stay is shorter.”

From Surviving to Thriving

Now, Maddie brings Mila to Cincinnati Children’s to see a psychologist for her developmental assessments. This is part of the FETO study that allows us to learn how these babies are doing as they grow.

Maddie gushes that Mila is doing phenomenally. “She’s doing better than we could have imagined. She even scored ‘superior’ in her fine and gross motor skills, and we are thrilled.”

Dr. Lim, who personally follows up with every family long-term after the FETO procedure, said, “We offer the full package, starting from time of counseling and ending with long-term follow up.”

Updated: April 2020