Early in the morning on June 29, 2010, my son Teddy came into this world unable to breathe. He gasped for air as a team of specialists tried feverishly to help him. An x-ray confirmed that he had CDH, which my doctor had suspected during a routine ultrasound just a few weeks before he was born.
Luckily, Teddy was born at full term and weighing almost nine pounds, most likely helping him through the nightmarish battle that was ahead. In the hours following his birth, his health deteriorated so rapidly that he required a medical evacuation to Children’s Hospital Boston, as well a complicated life support machine to keep him alive.
The next weeks of his life required so much fight – surgery, life support, IV’s, dozens of medications, and fluids that puffed his little body up like a marshmallow. He lay there motionless, but all the while he refused to give up his struggle to stay with us. Teddy met every obstacle with unwavering strength. Each time his medical team put him to the test, he rose to the challenge, earning him the nickname ‘Incredible Teddy’.
After five days on life support and another 16 days on a ventilator, Teddy was finally able to breath on his own. It was then that our family was finally able to sort through the mess of the crisis. We found ourselves scrambling to understand CDH and its outcomes, wondering how long he would need to be hospitalized so far away from our home in upstate NY, and tending to the other important aspects of our lives that included a 22-month-old daughter, a dog, a home, and Phil’s career.
The answers to these difficult questions began to reveal themselves to us slowly over time. Teddy made it clear that he was a fighter and that he would continue to overcome any hurdle that was placed in front of him. We learned that the survival rates for CDH are tenable, at best, and that many CDH survivors continue to have significant medical needs well into their childhood. We are blessed to have a huge network of caring family and friends that assisted us with our needs, like finding a place to live while in Boston and helping us to take care of our daughter and our dog. We are fortunate to have not felt tremendous work or financial strain. Teddy was discharged from the hospital eight weeks after he was born. He required only minor assistance at home – a feeding tube through his nose, oxygen, nutritional support, physical therapy, and speech therapy for feeding difficulties.
We are blessed to have a huge network of caring family and friends that assisted us with some of our needs, such as finding us a place to live while Teddy was hospitalized in Boston, and helping us to take care of our daughter and our dog. We are fortunate to have not felt tremendous work or financial strain. Teddy was discharged from the hospital eight weeks after he was born. Once home, he required only minor assistance, including a feeding tube, oxygen, nutritional support, physical therapy, and speech therapy for feeding difficulties.
So with these details sorted out, and with a thriving baby that overcame tremendous odds, we asked, why? Why did this happen to us? Why were we so lucky to have one of the few children that survive, and to do so in such a heroic way? Why does this birth defect exist and what can we do to eliminate it?
It became obvious that we needed to be a part of the CDH solution. Like Teddy, we needed to be incredible. We started the Incredible Teddy Foundation to honor Teddy’s fighting spirit, and to battle a life-threatening birth defect. We hope that the Incredible Teddy Foundation can support other families that receive a CDH diagnosis, and shine a light on congenital diaphragmatic hernia.