Scott's Story: Parent's Letter Project Aortic Coarctation - Scott’s dad

In late 1994 my wife Laurie and I found out that she was pregnant with our first child. This was exciting news and we felt at the age of 27 we were ready to be parents for the first time. As we rolled into the new year we began the preparation for our first child with the typical excitement and trepidation of any first time parents. At about the six month mark, during our bi-weekly visit to the obstetrician, we realized there was a problem. Suddenly there were more and more doctors taking interest in the ultrasounds. We found the appointments getting a bit longer and more doctors being consulted. After a couple of extended appointments, we were suddenly referred to a pediatric cardiologist. Though we were young and a bit clueless about what was going on, we began to realize there were complications and we became concerned. Within a few visits we got what we believed was the worst news we had ever heard in our lives. Our child was diagnosed with hypoplastic left heart syndrome. We felt like our world had caved in.

I will fast forward through the next couple months which were really an emotional blur. By the time my wife was a few weeks from delivery of our son Scott (we had been told by now it was a boy as we wanted some good news to take our mind off of what was going on and to be able to give him a name) his heart had miraculously developed to a point where his final diagnosis was aortic coarctation. This would normally be seen as a devastating situation, but considering the first diagnosis we received, we considered this good news. And with good reason, because when we spoke to the specialists, they were very optimistic for a great outcome. We were told exactly what was going on and that he would need open heart surgery, but that if everything went right, his heart would be repaired and he would more than likely live a normal life. At this point we were also referred to the man I believe is the best pediatric cardiac surgeon in the world, Dr. Richard Jonas.

I will once again fast forward to the present. My son Scott will turn 18 in a month, he just graduated high school and will be attending the University of Massachusetts-Lowell in the fall. When he was born, he was immediately brought to Children's National and five days later he had surgery to correct his aortic coarctation. He was home two weeks later and he has basically lived a normal life ever since. His only limitation was not allowed to play contact sports until his heart had completely healed, which was fine because he loved baseball anyway. In Scott's case, he was cleared when he was 16 years old. Today he is a normal teenager. He is 5'10" and 140 lbs. and if you weren't told he once had a serious cardiac issue you would never know it. He is smart, active, a good baseball player, and just got his driver's license.

I write this letter to any parents facing this same challenge, because I want you to know your child is in great hands and there is every reason to believe your child is going to have a happy, healthy, and normal life once you get through this difficult time. You should know that your child is being cared for at the finest children's hospital in the world and he or she could not be in better hands.

Good luck to you as you go through this difficult time. There truly is a light at the end of this tunnel. Take things in stride and cherish any good news and bright moments that come along through these tough days. Someday I am sure you will be lucky enough to come back to this website and write the same kind of positive and encouraging letter to another group of parents that are going through the same thing you are going through now.

Sincerely,

Scott's dad, Matthew

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