We were told about halfway through my pregnancy that Isaac likely had a birth defect, it was narrowed down by an amazing team at Children’s National Medical Center when I was 25 weeks pregnant. Because they couldn’t see his stomach on ultra sound they knew he wasn’t swallowing – only a few things cause this, Esophageal Atresia being one.
Esophageal Atresia is literally a gap in the esophagus, Isaac had two pieces (top from his mouth, and bottom from his stomach) – there just happened to be about a 5 cm gap between the two. Tracheal Esophageal Fistula falls under the same category – this is when the top piece of esophagus is actually attached to the trachea, considered an easier medical fix, but it still comes with a myriad of medical issues.
After birth (at 31 weeks, this is common with EA/TEF kiddos) Isaac spent 4 months in the most amazing NICU on the planet, at Fairfax Hospital. He lived with a tube that went down his throat (called a repogle) that constantly suctioned saliva out of the top esophageal pouch. This is important because if it wasn’t in place he likely would end up with pneumonia, 50 years ago this is what took the lives of many EA/TEF babies. On his 3rd day of life he had a feeding tube placed, he still relies on it for nutrition.
Surgeons attempted to repair his esophagus early on, the repair didn’t work and a laundry list of other issues arose. The early attempts at repair paralyzed Isaac’s vocal cords and resulted in his trach.
Eventually we ended up finding a wonderful surgeon in Minnesota who was able to use a technique pioneered there to “grow” Isaac’s esophagus. During the growing he had to be kept paralyzed and sedated, a total of 3 months during his first year of life.
Eventually, Isaac had his esophagus connected, and we thought we would go on to lead “normal” lives. Unfortunately this wasn’t the case. Dr. Hess always told us that Isaac was complicated, and he didn’t know how his esophagus would hold up.
As time went on, Isaac had recurrent fistulas, holes. These holes happen every six months, almost like clockwork. When that hole opens it connects to a hole in Isaac’s right lung, causing pneumonia and severe risk to his right lung. As a result of the multiple chest surgeries he has had Isaac’s right rib cage has completely fused, creating more damage to that poor right lung.
So, on Monday we will solve the problem once and for all, ironically with the surgical fix we were avoiding his first year of life. Colonic Interposition is not a new surgery, it is the original fix to EA kids. It comes with it’s risks – because the conduit is so much bigger than the esophagus food in the stomach can come back up, Isaac will always have to remain upright after eating and sleep in a bed with an elevated mattress. With Isaac we never know how well something will work, but we are hoping and praying that this is the fix he has needed.