At each pediatrician's visit, the murmur seemed to get louder. At just under a year old, we were referred to a pediatric cardiologist. Joey had an EKG and a sedated echo. We were told he had "increased velocity in his left ventricle", but that it was probably just an innocent murmur. We were told to come back for a new set of tests in two years.
Two years later, we came in for a new EKG and echo when Joey was nearly three. We hoped to again hear that it was "nothing", but unfortunately that was not the case. We were told that he has a "mild to moderate" subaortic stenosis. We were told that it would most likely eventually have to be corrected, and that we were to come back for an echo every six months. After several good echos, we were told in July 2001 that the stenosis had increased and the aortic valve was now leaking. Joey's cardiologist, Jorge Giroud was wonderful in explaining everything to us.
Joey had open-heart surgery on September 13, 2001 to remove the subaortic membrane at All Children's Hospital in St Petersburg. His surgeon was Dr. Jeffrey Jacobs, and the surgery went beautifully. He was home and by all appearances back to his normal self within 5 days of the surgery. Now we are simply following up with his cardiologist periodically as the membrane can grow back after about 15% of the surgeries.
I would love to hear from parents whose children have had or will have similar surgeries. In Joey's case I can verify that prayer was key- he had groups praying for him in four states and I think it was a major factor in his excellent recovery.
February 2007 Update
Within a year of Joey?s September 2001 surgery, the subaortic membrane had begun to grow back.? We once again began the every-six-month game of ?wait and see? as we watched the membrane at each echo.? Finally, in 2006, following a stress test and an echo it was determined that the membrane was getting substantial and the valve was leaking again. ?His cardiologist suggested a Ross-Konno procedure, to replace the aortic valve with Joey?s own pulmonary valve and replace the original pulmonary valve with a donor valve.? He was scheduled for a transesophageal echo (TEE) and catheterization to gather information for the surgery.? Fortunately, the TEE showed that the valve was in better shape than expected so the plans for the Ross-Konno were scrapped in favor of another subaortic resection.? The resection was done on May 18, 2006 (the day after Joey?s last day of 3rd grade.)? The surgery was done by Dr. Quintessenza at All Children?s Hospital in St Petersburg, Florida.?
During the surgery he found that Joey had a hypertrophied (overly muscular) area in his left ventricle, and that was removed along with the membrane. ?Also, during the surgery a branch of his coronary arteries were nicked, causing bleeding into his heart for 2 ? months.? Thankfully, that resolved on it?s own and no further action was needed. ?Three weeks post surgery, Joey was re-hospitalized for three days due to reactive arthritis, a painful hip joint infection/inflammation caused by the surgery. ?
Now, Joey is approaching a year post surgery and is doing very well.? He sees his cardiologist every six months, and at the last appointment everything was looking good.? He is a straight "A" student and is a soprano in the advanced choir at his school.? I maintain a website about his heart defect and surgeries and enjoy hearing from other parents.