Miles today - Happy and Healthy

My son Miles was born November 9, 2001. He was 3 1/2 weeks early following a normal pregnancy. Ultrasounds during pregnancy did not pick up any heart defects - which is common with his specific CHD. The first four weeks at home were typical. At one of his check ups the doctor did notice a heart murmur, but it wasn't a big concern. At about 4 weeks of age Miles started to develop what we thought was colic.

This went on for about 5 weeks, when he then was hospitalized for what we thought was bronchiolitis. The emergency room doctors indicated to my husband and I that his heart looked enlarged and further testing would be done once he was admitted. The attending physician informed us that Miles was not a heart baby - he wasn't blue and gained weight appropriately. He felt the x-ray indicated an enlarged thymus gland. We felt relieved and were sent home several days later.

Miles seemed to improve for a few days, but then deteriorated once again. He cried constantly and it got to the point one night where he was crying so hard he threw up and did not seem to recover. He was listless and breathing very hard. We called 911 and he was again admitted to the hospital for what was thought to be a reoccurrence of bronchiolitis.

The next day in the hospital our regular doctor informed us that x-rays showed an enlarged heart and he wanted to do further testing. You can imagine our surprise since the other doctor indicated he did not feel there was a problem with the heart. We waited nearly all day for someone to be able to do an echocardiogram and Miles had to be sedated. Our doctor informed us the results indicated some problem with the heart and Miles needed to be transferred immediately to Children's Hospital. I kept feeling there must be a mistake and we would hear better news at Children's Hospital. I had gone on close to 24 hours without sleep at this point.

Once at Children's Hospital, an echocardiogram was conducted almost immediately. Right away they diagnosed Miles with Anomalous Left Coronary Artery from the Pulmonary Artery - a very rare CHD occurring in <1% of all CHDs. They told us Miles was very sick and gave him a 60% chance of a full recovery. They cleared the surgical schedule in the morning - so we had about 8 hours to digest this horrifying news. Needless to say my husband and I were stunned and felt as though were outside of our bodies when we heard the news. We were told that what we thought was colic was actually heart attacks that Miles had been having. We spent the next 8 hours by Miles side dreading when he would be taken for surgery.

The surgery lasted about 6 hours and we were told he would most likely be placed on ECMO - a heart-lung bypass machine. Our first bit of good news came when we were told his heart was functioning well enough that he would not need to be placed on ECMO. After about 40 hours with no sleep my husband and I finally felt able to get some much needed rest.

Miles stayed in the hospital a total of two weeks and came home on February 14, 2002. He was taken off all medications by May 1st 2002 and it was initially thought his mitral valve may have some damage requiring further surgery, but follow up testing indicated it was fine. This is the only surgery Miles has had and it is not anticipated he will need any further surgeries.

Today Miles is a happy and healthy toddler. He initially was slow in some physical areas such as sitting up and rolling over. Although he didn't crawl until 11 months old he started walking at 12 months old and is talking up a storm. At his 2 year appointment he weighed 26 pounds. He was the spokesperson for our region's American Heart Walk this year.