Hello, My name is Tara and my son Ben is now 4 months old. He was born with Aortic Stenosis and was diagnosed at birth.
We were originally told it was mild and may not require intervention, but the condition became worse and we were rushed to Children's Hospital for a balloon valvuloplasty. He was only 2 weeks old at the time, but he did very well and came out of the operating room sucking on a binky. He was discharged the next day straight from ICU.
He is now 4 months and has seen a cardiologist every 2 weeks since the procedure. He has no symptoms, but the echocardiogram reveals the pressure gradient is increasing. At last visit it peaked in the 70's. He also has a small leak that is causing some concern, but we hope to wait as long as possible before we try another valvuloplasty.
My family is now trying to get through each day and regain some sense of a normal life. This has been our battle. Right now we feel blessed to have him in our lives and confidant in the doctor's recommendations.
June, 2004 Update
A lot has happened since I posted this page. Ben underwent a second Balloon Valvuloplasty at 6 months of age. It made little difference in his condition, but since he was still symptomless we decided to wait and see how he progressed. Unfortunately, during this time a leak developed that would no longer make him a candidate for another Valvuplasty. His pressure gradient was peaking in the 70's and the leak was increasing, but he still has little symptoms. After three second opinions and many visits with the cardiologist, we decided to move ahead with the Ross Procedure.
On May 24, 2004 he underwent the Ross Procedure at Children's Hospital Los Angeles. The surgery was scheduled for 6am, but was postponed till 10 due to an emergency. The hardest part for me was letting him go. The hospital staff tried to sedate him prior to the surgery, but he would not go to sleep, so when they took him from me he cried and called for me. It was heart wrenching to hear him crying down the hall and not be able to comfort him. The surgery took 3-1/2 hours. They had to go back in right after the surgery due to some bleeding, but this was taken care of very quickly. During the surgery it was discovered that his pulmonary valve was also bicuspid, but the surgeon went ahead with the procedure. There seems to be a difference of opinion as to how a bicuspid valve will affect the outcome, but everyone agrees the surgery was a success. He has no stenosis and no leaking. The surgeons felt he would not need to replace Ben's pulmonary valve until about age 9 or so, depending on his growth.
Ben was off the breathing machine by day 2 and was eating pizza for dinner the same night. He was discharged from the hospital 3 days later straight from the ICU, and has recovered very well. His pain was managed very well at the hospital and we were given pain medication to give him at home for the first week or so. After the first week, we slowly held back the pain medication and noticed that he didn't seem to need them. Two days after we were discharged, the incision where the drainage tubes opened , so we returned to the hospital for have them looked at. They were fine and re-closed. We had to return to the hospital once more to check the incision for infection. The doctors felt the incision looked a little pink so he was given antibiotics just in case. The incision looked better the very next day. The swelling has now gone down and he has almost no discomfort. He will occasionally overdo himself, but he seems fine after a short rest. He has few restrictions and we are slowly letting go. He remains on a diuretic, aspirin and blood pressure medicines for now, but he is otherwise a normal energetic happy toddler. Everyone is amazed at how brave and determined he is, but I am not as surprised. Ben has always been determined to lead a normal life and was never upset by the doctor visits, tests and surgeries. I have always known in my heart that this child was special.
I spent many night praying for a miracle for Ben. I was talking to a friend one day before the surgery and she said I had already received my miracle, I just needed to see it. My outlook changed at that moment. God had sent Ben a miracle in the form of the doctors and nurses. They were performing his miracle right before my eyes. It is truly amazing what these doctors do for our children. Ben would not been here if it were not for their courage to do what was once thought of as impossible, and with every child they try to help, they learn more to help others, and I am proud that Ben could be one link on that chain of miracles.
I can never thank our surgeons, Dr. Starnes and Dr. Derby enough for the gift they have given me. I am brought to tears when I think of the ICU Nurses and counselors who held and comforted Ben and our family through those difficult few days, and of course his cardiologist Dr. Alan Tong and his pediatrician, Dr. Paul Horowitz who have carried Ben and our family from day one, answering endless questions and countless calls. I can't forget to mention my family and friends who brought meals to the hospital, took time off to care for my older son Jacob (who has also been great through this ordeal ) while we were away, as well as friends who checked in and listened to me ramble on and on. God bless them. I am also thankful to California Children Services who is paying for Ben's care. Our regular health insurance excludes any heart-related care from coverage, so without California Children Services, we would not have any coverage. It has been nice to not have to worry about paying for his care during this time.
As for us, we are doing great. I am so proud of both my sons. Ben has shown me how fragile and valuable life is, and his brother Jacob who is only 3 himself was truly there for his brother, bringing him toys to play with and sitting on the ICU floor for hours at a time while we waited for Ben to recover. We will face the future as it comes, but for now I am just trying to take one day at a time. I guess that is the only thing we can do.
Thanks for hearing our story
