During a sonogram at 15 weeks, Jeanie and Shaun Glenn of Seward, Alaska, found out their baby’s heart was off center. Additional tests eventually revealed congenital diaphragmatic hernia (CDH) with the liver, spleen, stomach and a portion of intestines all squeezed above the diaphragm into the chest cavity.
“Our doctor told us, if you want this baby to live, you need to seek care at an expert center,” recalled Jeanie.
The Glenns searched to try to find the best center to treat their unborn baby with CDH.
“Our thinking was that if we had to leave home anyway, we might as well pick a hospital which is known to have the best outcomes and extensive experience in treating CDH,” Jeanie said.
They chose Texas Children’s Fetal Center, and Jeanie’s doctor began coordinating care with Dr. Oluyinka Olutoye and Dr. Darrell Cass, former co-directors of the Fetal Center.
Jeanie underwent extensive prenatal evaluation which included ultrasound and echocardiography studies which revealed severe left-sided CDH. Mother and fetus were followed closely until 37 ½ weeks, at which time labor was induced due to concerns about fetal distress and poor growth.
Shaun, still working in Alaska, made it to Houston with just three hours to spare before baby John was delivered by emergency cesarean section due to a decrease in his heart rate. Weighing just 4 pounds, 9 ounces, John immediately went on a ventilator to support his severely underdeveloped lungs. John was treated with what is known as a “gentle ventilation” approach and a number of medicines to optimize the heart and lung function. His condition stabilized and then slowly started to improve. Remarkably, extra corporeal membrane oxygenation, a treatment for the most serious cases of heart/lung failure, was avoided.
At just five days old, Dr. Cass performed surgery on John in the NICU, a strategy pioneered at Texas Children’s Hospital. The liver, spleen, stomach and intestines were carefully removed from the chest and placed into their normal spots. John was born with almost no diaphragm muscle on the left side, and thus the repair required the use of a large patch to close the hole.
John slowly recovered. After 100 days in Texas Children’s NICU, the Glenns flew back to Seward with John on oxygen. He has had a couple of scares since moving back to Alaska, but overall John is progressing remarkably well given the severity of his initial diagnosis.
“We are incredibly lucky,” said Jeanie. “We picked Texas Children’s because they said that they would give our baby every chance, and that’s exactly what they did. All along the way, they never gave up. I don’t think John would be alive if we had not found the excellent care that we received at the Texas Children’s Fetal Center and Texas Children’s Hospital.”
Fetal Endoscopic Tracheal Occulsion
In addition to the excellent care John received, Texas Children’s Hospital is also able to provide treatment for the most severe cases of CDH under a research protocol approved by the Food and Drug Administration.
Fetal endoscopic tracheal occlusion places a tiny balloon in the trachea of the fetus in mid gestation to improve lung growth. The balloon is then removed later in the pregnancy to allow the baby be delivered normally.
The physicians and team at Texas Children’s Hospital have the most experience with this treatment modality in the United States and are currently evaluating and treating patients in this study.