*The following story was shared with us by Bobby's mom, Pam
Bobby was diagnosed at birth with a rare form of congenital heart disease, called Severe Aortic Stenosis. We were living in Washington DC at the time and he was airlifted to Children’s Hospital of Philadelphia (CHOP). It was a very scary time as this condition is only diagnosed 1 out of 1 million births. The doctors at CHOP were not always sure what to do, but they saved my son’s life on multiple occasions with the different procedures, medicines, and ultimately open-heart surgery.
Our journey was a long one. While diagnosis came rather quickly, nothing the doctors did seemed to work. Bobby had several balloon dilations of his aortic valve and was on multiple medications and heavily sedated. He was only days old, but struggling to survive. I had to quit my job and we were staying at the Ronald McDonald House in Philadelphia. I was inconsolable. But his doctors never gave up on Bobby and he is a fighter!
Bobby had his first open heart surgery at just 3 months old. It was a very long surgery and very complicated. The doctors were the best we could have hoped for. Not only was it a success, but I am very thankful Bobby was too young to remember. Recovery was long and painful for an infant that could not tell me that he hurt. Bobby survived against the odds given us.
My advice is to not only trust your doctors, but learn everything you can and be an advocate for your child. If you do not trust or are not comfortable with your doctors, get a second opinion. I believe having a doctor your child is comfortable with is just as important as the care he/she is receiving. And remember to take care of yourself as the parent. You need to be there for your child, but you cannot be if you are sick.
*You may reach Pam Ludwick at firstname.lastname@example.org