Shane's Story - Chapter 5

That Monday (February 1, 1993), the day of Shane's surgery, his grandfather, a preacher, formed a bedside ceremony to Dedicate him.   Being raised Catholic, I was terrified something would happen to him before he was Christened.  This was the closest thing to a Baptism/Christening as we could get in the hospital.  (I realize everyone has different religious beliefs and we hope that you respect ours as I share my son's story).  This bought me a great deal of comfort as making sure this was done was one of the few things I had control over.

While our parents waited in the operating room waiting area, Jeremy took me to the emergency room. I was in so much pain and I hadn't had an exam since Shane was born, not even by my doctors before I left the hospital. I was given painkillers and told that I was just bruised. Jeremy ran back and forth from the E.R. to the O.R..

Shane was in surgery for 6 hours. Finally, the surgeon came in. The surgery went well and Shane was given a 50% chance of survival.   He had no left diaphragm at all, just a ridge of where a diaphragm tried to form.   His stomach, intestines and spleen were in his chest and his heart was moved over to the right.

He also had a pulmonary sequestration.  This is a medical condition where a piece of tissue that ultimately develops into lung tissue is not attached to the pulmonary arterial blood supply, as is the case in normally developing lung.   He had an extra artery going to this undeveloped piece of lung, which was causing his heart to work harder.

The surgeon decided to remove the lung sequestration and use that tissue to patch up Shane's diaphragm.   He didn't ask us for permission to do this and because this was a teaching hospital and we had signed consent forms, he was required to ask us.  21 years later, I still have yet to find one research article on anyone ever attempting this before or after on humans or animals with CDH.

We were told that if all went well, he could be home in 2 weeks.