Patient Stories > Max Decker

Six-month-old Max Decker was born with a hole in his diaphragm, the muscle that helps you breathe. The opening can allow the contents of the abdomen, including the stomach, spleen, liver and intestines to come into the chest cavity near the lungs. The condition, called congenital diaphragmatic hernia, can lead to respiratory failure and heart problems. Babies with this condition have very underdeveloped lungs and as a result they frequently require advanced respiratory and cardiac support.

Shortly after he was born, Max was transported to the Neonatal Intensive Care Unit (NICU) at St. Christopher's Hospital for Children, which is 70 miles away from the family's home. Doctors placed him on extracorporeal membrane oxygenation (ECMO), a heart-lung bypass machine that helped take the strain off his heart and lungs while he awaited surgery to repair the hole in his diaphragm. His surgery was performed during the three weeks he was on ECMO. Max was so ill that his physicians frequently had to warn his parents to prepare for the worst, which could have been severe heart, lung or neurologic damage, or even death.

Babies with congenital diaphragmatic hernias have an up to 80 percent survival rate if they do not have major respiratory issues, but those like Max, who are so ill that they require ECMO, have as low as a 50 percent survival rate.

But Max was lucky. His surgery was a success and he was gradually weaned off of ECMO and other forms of mechanical ventilation. After spending more than two months in the NICU, his parents were finally able to take their baby boy home.

Today, Max is doing well, gaining weight, drinking from a bottle and smiling and giggling. His parents and brother are thrilled that they can play with him, take him to the park in a stroller and show him off to relatives. His mom says that she is grateful for Max's surgeon and his healthcare team in the NICU for never giving up on her son and for saving his life.