Genetic Testing

The doctors knew that early in my pregnancy, somewhere between the tenth and eighteenth week, something had gone wrong with the development of Matt’s heart. Matt’s pediatrician suggested that we have him see a geneticist to find out if he had an underlying syndrome that would explain what happened to his heart and perhaps give us an idea of what the future held for him.

Off we went to UCLA to have them draw more blood from Matt. Matt ended up being seen by the Chief of Genetics at UCLA. They tested him for a number of different syndromes. All of the tests came back negative. The geneticist told us that it did not mean that Matt did not have some syndrome, but he did not have any of the known syndromes.

The field of genetics is exploding with knowledge and growth so at some point in the future an as-yet-unknown syndrome could be discovered and we might learn that Matt has that yet-to-be-discovered syndrome. Or he could have something that only he has, something unique to him. Or it could have been caused by something else, and he doesn't have any syndrome at all.

We all know that something went wrong. We just don’t know what caused it. We may find out at some point in the future or may never find it out.

For a while the lack of an answer really bothered me. Then I decided that no one knew what Matt’s future would be. Therefore, I would just continue to focus on helping Matt reach the best future he could have. The lack of information changed nothing. I still had my mission in front of me: help Matt reach his potential.

And so our journey continued.