This month's topic is heart health, which is a subject we are all too familiar with.
I may have mentioned in a previous post that my 5 year old has a congenital heart defect. He has a sub-aortic stenosis. There is a piece of tissue blocking the blood flow to his aorta. Blood is supposed to flow smoothly from the left ventricle through the aortic valve. In Asher's case, as the heart pumps the blood passes a very small piece of tissue and hits the aortic valve with some turbulence. Over time, as blood hits the valve in this fashion, the valve weakens and does not close properly. If the valve does not close properly, there is leakage, or regurgitation, of blood back into the ventricle. This leads the heart to work harder then necessary to pump blood out of the aorta. The left side of the heart would grow disproportionately to the rest of the heart, thickening the actual heart muscle inappropriately. The valve would continue to worsen and leak, and therefore need to be replaced. Valves have an expiration date, especially in young children as they do not grow with the child. Valve replacement means lifelong blood thinners to prevent clotting, etc...
Suffice it to say that you don't want this to happen to you or your children.
Let me back up. The pediatrician discovered this situation in Asher at 1 year. She noticed a murmur at several appointments, and while murmurs are quite normal, they sound very different to the trained ear. She was uncomfortable with how this one sounded, so we were referred to a pediatric cardiologist to have it checked out further.
On what I can only describe as the second worst day of my life, it was at the cardiologist's office that we found out Asher would need to have lifelong monitoring of his condition, and in all likelihood, would need surgery to fix it.
The surgery would be open heart.
The day of his surgery? The hour he was on cardiopulmonary bypass, and they stopped his heart? That day was the worst of my life.
Asher had open heart surgery by a cardiothoracic surgeon whose own daughter had a heart transplant. That is a man I would trust to make extremely cautious judgments when operating on another person's child. He has been on the other side, and in my opinion was a better surgeon for it. Asher was 20 months old. He did beautifully. He will need to have the surgery repeated because as a young, growing child, his membrane is growing back.
Hopefully that will be the second worst day of my life, bumping the other down to third, and then we will be all done with heart surgeries. For now, we don't know when it will be, we just keep hoping he grows a little more to be a little bigger when it happens.
However, when I think back to my experiences, all I can say is that we have been lucky to have doctors that are special human beings. Truly talented, truly miraculous, and truly dedicated to the health and well being of our child and our family. And as a parent, it is your job to advocate for someone like that to care for your child. If you don't feel like you are getting the complete attention of your doctor, and they are not treating you the way they would wish their children to be treated, move on. Seek out those who will, because they are out there, and they will make all the difference in your lives.
A beautiful team of them saved Asher's life, and I am counting on them to do it again.