Groundbreaking Procedure for Severe CDH

Patient Stories

Milan Torry cdh 0

When Jenny and Tawa Torry lost their first child to birth defects caused by congenital diaphragmatic hernia (CDH), they never dreamed they’d have to face the same heartbreaking possibility again.

But when Jenny was 17 weeks pregnant with the couple’s second child, an ultrasound showed the fetus had a life-threatening CDH.

“After my experiences with ultrasounds, I know how things should look,” Jenny said. “When I looked at the monitor, I started to cry. I couldn’t believe we were going through this nightmare again.”

The couple lost no time in going to Texas Children’s Fetal Center, where their daughter, Milan, was the first to benefit from fetal endoscopic tracheal occlusion (FETO), an experimental procedure to treat severe CDH.

“Milan’s CDH was quite severe, which we were able to ascertain by the fetal lung to head ratio (LHR), presence of liver herniation into the chest, percentage of liver herniation and total fetal lung volume,” said Oluyinka Olutoye, MD, PhD, co-director of Texas Children’s Fetal Center. “Although this was the first time we had performed the procedure, the operation went smoothly with no complications. An endoscope was inserted through the fetal mouth and into the fetal trachea. The scope was advanced to just above the carina, and the balloon was deployed and left in the trachea above the carina.”

Michael Belfort, MD, PhD, OB/GYN-in-chief, and the team of surgeons then placed the balloon. About six weeks later, the process was repeated and the balloon was removed.

The procedure was a success, and Milan was born at a little over 35 weeks gestation. The postnatal diaphragm repair-surgery went smoothly as well. She spent five months in neonatal intensive care but was able to go home healthy.

Milan is doing remarkably well, and she’s on target with physical and developmental milestones. She does not have pulmonary hypertension, and her heart functions are normal. She no longer takes any medication, and although she has a g-button, she rarely uses it.

“Milan is so smart and funny,” Jenny said. “She really is a joy. Some of her favorite things are singing, dancing and playing with her toys. She’s very artistic and learns quickly.”

The family will return to Houston for future appointments about once a year until Milan enters college. In the meantime, they keep him posted on Milan’s progress with emails and cards.

“The surgery was a success because we were able to minimize pulmonary hypoplasia and pulmonary arterial hypertension,” Dr. Olutoye said. “She’s had a remarkable response and has done very well. I’d say she has an excellent prognosis.”

Jenny said they are reminded every time they look at Milan how much of a blessing she is.

“I can’t express how happy and proud we are that Milan is healthy and growing so strong and beautiful,” she said. “Everyone at Texas Children’s worked so hard to help our little girl, and we are forever grateful for their skill, expertise and care.”

Learn more about Congenital Diaphragmatic Hernia

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