Imagine, for a moment, that you are standing in an open field and you're surrounded by beautiful flowers and trees. In this wonderful place, you can even see butterflies flying all through the fields. Enjoy this peaceful scene for a moment because this picture of serenity can be shattered in an instant. A storm is now blowing in and you're frightened by the lightning striking all around you. That is just a glimpse of the intense feelings and emotions that come with finding out your precious baby has a Congenital Heart Defect (CHD).

My name is Debbie and my son, Evan, was born on September 7, 1998. I was excited and slightly nervous at the same time. I had a fairly calm and uneventful pregnancy, but that was my third pregnancy. I had two miscarriages before I was blessed with Evan. Everything was going well until the 8th month. I was at my OB's office for a routine prenatal visit and the nurse thought she heard something not quite right with the baby's heartbeat so the doctor came in and listened too. I ended up going to the hospital for a non-stress test every week for a few weeks and was eventually told that everything was fine and that the irregular heartbeat is normal for the prenatal period. I have to honestly say that I wasn't totally convinced that all was well after losing two babies before then. But, when Evan entered this world at 2:58 PM on 9/7/98, I began to relax. He looked wonderful and I was so happy that I had a baby. Here's where the storm begins. At 5:00 the next morning, while in the nursery, Evan turned blue and had a very irregular heartbeat. After much testing and a Life Flight trip to a children's hospital, Evan was diagnosed with Tetralogy of Fallot (ToF). When I was finally able to get to the children's hospital, the doctors explained to me what ToF was and how serious it is. ToF is a complex CHD and only some of the defects involved can be repaired. I was devastated. I can even remember being angry at God because He finally let me carry a baby full term and was now going to take this one too. But I think that's a very normal reaction. It's all part of the process of grieving the loss of a "normal" child.

Guess what? Evan is still here with me. He's doing great. He had his first open heart surgery on 2/11/99 and will need more in the future because during his first surgery they had to remove his pulmonary valve. It was doing more harm than good because it was much too small and didn't work properly. So, eventually, he will need a valve put in.

But I can't spend all the time I have with him worrying about the next surgery. One of the many things my 4 year old has taught me is that it's today that counts. Yes, I'm very worried about "tomorrow" and what it will hold for my special blessing. He has developmental delays, is being tested for DiGeorge Syndrome and has just started special education. But he is obviously a fighter and if we can get through open heart surgery at 5 months of age, we can certainly handle the smaller battles too. He is my sunshine and I wouldn't trade a single moment of the past 4 years. I have learned since then that CHDs are the most common birth defect and, unfortunately, the leading cause of birth defect related deaths in infants and children. I feel as though it's part of my job as Evan's mom to make more people aware of these facts. But the most important part of my job as his mom is to make sure that he never has any doubt in his mind that he is wanted, appreciated and loved.

On a final note, Evan is also the awesome big brother to Matthew Mitchell born 4/13/02.

Copyright(c)2002 - Debbie

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