To Have or Not to Have

If you knew that by having a child, you could be handing them a death sentence, would you do it? If there was a 50/50 chance, would you be willing to take the risk? If you knew that there was a way that you could almost guarantee your child not be born with the same disease that has inflicted you, would you be willing to do something that goes against everything you believe in?
These are the question that Robert and I struggled with even before we got engaged. We wanted to have children. We like that idea of that tangible proof of our love for each other. On the other hand, we weren’t sure that we wanted to subject our children to the grief and pain that Robert faced with his mother. It was a gut wrenching decision.
One thing that I found out was if we chose to do in vitro fertilization, there was a way to minimize the risk of our child contracting HD. Prior to insemination, a test would be done on the embryos to determine if they had the HD mutation. Any embryos that were determined to have the genetic mutation would be discarded. At first, we thought that was an option, but the more we thought about it, the more we struggled with it. Deciding which embryos to keep and which ones to get rid of because they did not did not have a genetic mutation was playing God. We were taking the decision out of our Maker’s hands and that was not up to us to decide.
In the end, we decided to rely completely on God. If it was part of His plans for us to have children, then we would. If He decided that that was not what was in store for us, then that was the way it was to be. If we had a child that was born with the abnormality on her chromosome, then that is the way it was supposed to be.
We spent a year and a half trying for a child and in the end, it didn’t happen. In the course of trying, it was determined that I had some health issues that would not be easily overcome without risk to me and any child that I might have. In the end, it was taken out of our hands. That doesn’t mean that we don’t feel some moments of sadness or regret that we were not able to have a child, but we know that this life is the life that God has planned for us.
Someone else facing the choices we did may come to a different conclusion. For them, that is the choice that is the best for them. I do not judge them for the choices they make. I do understand it is not an easy choice and each couple has to make the decision that is best for them.

What is Huntington's Disease?

What exactly is Huntington's disease or HD? The shortened definition is that it is degeneration of specific brain cells that causes uncontrolled movements, loss of intellectual facilities and emotional disturbances. It also impacts the area of the brain that controls thought, perception and memory.

Long version is that HD is the result of an abnormality on the 4th chromosome that causes it to have an abnormal repeat. Over time, this build up of the abnormal repeat is what will cause the disease to overtake the body. There is no set age of when it will affect a person. It all depends on how fast the chromosome repeats itself and builds up in the body. However, most often, though, it begins during middle age. There are some people that have developed symptoms at an earlier age, but those are very limited numbers.

Huntington's disease is an inherited disease. It is passed on from an infected parent. Each child has a 50/50 chance of contracting the disease. An example of the randomness of who will be affected can be explained by using the example of my husband, Robert's family. His grandfather on his mother's side had the disease. Of the three children he had, only Robert's mother was infected. Robert's uncle and aunt did not inherit HD. Robert has 4 siblings. A sister and 3 brothers. Of the 5, his sister, one brother and Robert have tested positive. The other 2 brothers did not inherit the disease.