Take Care STL

Photograph Courtesy of the St. Louis Fetal Care Institute

Breathe in. Breathe out. It is a simple, involuntary act that most people take for granted. However, for newborns battling severe congenital diaphragmatic hernia (CDH), every breath is treasured. CDH is a fetal abnormality that occurs in one of every 2,500 deliveries. The abnormality forms when the diaphragm grows improperly, allowing organs in the stomach to grow in the chest. Although this can be fixed with simple surgery after birth, the damage to the lungs is often irreversible. The misplaced organs stunt the growth of the lungs, placing the baby in danger.

In the past, the only choice for parents was to hope that the damage wasn’t too severe and that the child would recover through surgery. However, about a decade ago, nature gave evidence for a more effective option. “What nature showed us is that some kids are born with blockages in their trachea and that causes their lungs to be huge,” says Dr. Edmund Yang, the co-director of the St. Louis Fetal Institute. “It was a logical step to try to accomplish a similar feat of blocking the windpipe for babies whose lungs were too small.” In other words, doctors purposefully block the windpipe with a balloon. This process is called tracheal occlusion. The procedure stops fluid from escaping the lungs, and ultimately stretches the lungs, making them grow faster than normal.

Although this gives parents a treatment option before birth, it isn’t a perfect solution. “The problem with putting in a balloon is you’ve got to get it out,” Yang says. The balloon increased lung capacity but became a risk during delivery. Yang turned to another method involving a substance called hydrogel. This blue gel temporarily blocks the airway, thus eliminating the need for a balloon. A physician injects the gel around 26 to 28 weeks into the pregnancy, and the gel naturally dissolves within four weeks. This eliminates the threat that balloons pose during delivery, but provides essential lung growth needed for the baby’s survival. “We’ve had some successes, and we’ve had some failures,” Yang says. “These moms don’t have many options besides what Mother Nature gave them. So we are trying to determine if this could help out with the disease.” Last year, Yang became the first doctor in the world to perform this procedure using hydrogel.

The size of the hole in the diaphragm can vary based on when the abnormality begins to take shape. This hydrogel procedure is reserved only for the most severe cases: babies with lungs only 10 percent developed. Yang states that the procedure is still in the research phase, but previous data shows that increasing lung size is essential to improving the quality of life for patients with CDH. “There’s certainly many sick babies, or babies who die from this disease,” Yang says. “These new interventions are an attempt to not only make more kids survive but to make them live better.”