Susan Jonsson writes about her son Andrew who was born with Transposition of the Great Arteries, as well as a large VSD and pulmonary stenosis.
My pregnancy with Andrew was uneventful. I already had a daughter 3 years earlier with no complications so, of course did not anticipate any this time. Andrew was born on March 9, 1985. He weighed almost 9 pounds and looked extremely healthy. We held him, as did our family members immediately after birth until they took him away to clean him up. I must have fallen asleep as several hours had passed and when I awoke I realized that my baby was not back in the room as they had promised. I called down to the nursery and they told me that there had been some complications and a nurse would be in shortly to talk to me. They wheeled me down to the ICU nursery (luckily I had him at Stanford Medical Center so they did not have to send him elsewhere) and I saw Andrew hooked up to tubes and machines. They said that he was having problems breathing and a chest x-ray was negative for pneumonia.
The next day they did a cardiac catheterization at which time they discovered that Andrew had been born with Transposition of the Great Arteries, as well as a large Ventricular Septal Defect (VSD) and Pulmonary Stenosis. They proceeded to make a larger hole through his heart so that the blood could flow properly until he grew bigger to withstand surgery. We went in for checkups constantly and he was on a few medications to help his heart beat properly so as not to cause it to work on overload. He didn’t really ever run or play without getting winded and his lips always looked like he had eaten a purple popsickle.
When he was five years old he finally was at the point where he needed the surgery. At that time the “switch” was something they were only doing in Europe so that was not an option for him. He had a Rastelli procedure which re-routed his “plumbing” so that the blood could be pumped and flow the way it should. He had two more surgeries at 8 and then again at 12 as he had outgrown the stents and patches. He has and continues to be under the care of his cardiologist (still his pediatric cardiologist even at 26) as most adult cardiologists still do not entirely understand the anatomy of what these kids have. Three years ago he had a pacemaker put in as he was having tachycardia beats and this has evened things out for him.
He graduated from Berkeley two years ago and now is at NYU studying to be a nurse. He plays baseball and is as active as any other 26 year old.
I wanted to share this story with others who have just begun to undergo this process with babies and for a little older ones to show that there is life and quality ones with CHD.
Wrote by Susan Jonsson
7th December 2011
Susan Jonsson has kindly given CHD-UK permission to use the photographs.