The update on Ben

The growth in Ben’s heart has grown significantly. Six months ago the growth was small and looked like a finger sticking out under his aortic valve. Now the growth has encircled the heart wall under his aortic valve. It is dangerously close to the aortic valve. The growth is also attached to the mitral valve flap. The leak in Ben’s aortic valve has also increased.

Ben’s medical information is being presented this week to the surgeon. The surgeon has to decide whether or not he thinks that he can remove the growth and still save the aortic valve (therefore not requiring an aortic valve replacement right now).

If the surgeon thinks that the growth is attached to the aortic valve, he will put off doing surgery until the aortic valve needs to be replaced, which the doctor thinks will be in the next year because of the aggressive growth of the membrane. If they try to remove the membrane while it is attached to the aortic valve, the valve is so fragile that it will most likely be damaged during any surgery and will require an immediate replacement. There is a life-span on replaced aortic valves and it would mean that Ben would face a future of further surgery.

If the surgeon thinks that the membrane has not completely grown into the aortic valve and he can remove the membrane without harming the valve, then Ben will probably have surgery within the next month.

Many people have ask what kind of growth this is. It is NOT cancer. There are some cells in his heart that have gone haywire and have started growing. They don’t know what causes it. They think that there is a genetic link, but don’t know which genes. Ben, Kath, and I have enrolled in a research study to try find a genetic link to this problem. One day in the future we may know the cause.

Other people have ask why they didn’t get it all the first time. The doctors told us at the time of Ben’s initial surgery that there was a 15% chance that Ben’s growth could come back. Ben was in a slightly higher category because he was so young (2 years old) when he had his surgery to remove the membrane. The doctor can’t tell which cells are going haywire. They can only make an educated guess as to which ones are bad. Because the membrane’s location near the nerves that tell your heart to pump the doctors can’t be too aggressive.

The doctors were always clear with us that we would have to closely watch for re-growth of Ben’s membrane until Ben stopped growing. After that Ben would have to monitor the leak in his aortic valve. So a lifetime of a cardiologist’s care was always in his future.

Ben does not show any outward signs of his problem yet. His cardiologist is asking us to restrict the time he spends outside in the heat. He allowed outside only if he is in the pool! He will like that rule. We do not expect an answer about his surgery until the middle of August. This is not a black and white choice and the surgeon will want to spend some time thinking about it.

Our prayer right now is that Ben’s growth has not attached itself to the aortic valve and that his aortic valve can be saved.