Drew's TOF diagnosis

The day after we left the hospital with our new baby boy I took Drew to Children's hospital to see a pediatric cardiologist. My husband stayed home with our daughter, I was sure there was nothing to worry about; boy was I wrong. Drew was hooked up to an ECG machine and the tech was friendly but very reserved, I started to worry. The doc listened to Drew's heart with a stethoscope and said to me "I hear a very abnormal murmur, we need to do more testing but I think we are in for a long talk this afternoon." Now I was really starting to worry.

They did an ultrasound of Drew's heart for 2 hours and no one really said anything to me except for small talk. They talked in medical terms to each other but it was nothing I could understand. I did my best to keep my 3 day old infant calm while they did the testing by this time I was crying knowing there was a serious diagnosis coming my way. After they were through the doc, a nurse-practioner and I went to a room where they explained to me that our perfect looking little boy has Tetrology of Fallot (TOF), a congenital heart defect (CHD) with four problems in the heart, it is the most common CHD.

I was shocked and I lost it, I was 3 days post-partum and I think I would have bawled if they told me he was healthy after the day I experienced. It was awful hearing that he would need open heart surgery and would start turning blue and may have life threatening "tet spells". I did my best to absorb all the information they were giving me and the staff treated me with the greatest care. They gave me print out of all the info they discussed with me.

I got myself together and called my husband to tell him the awful news, it was so hard. He was very supportive and wanted to know if he should drive to get me, but I insisted I would be ok to drive home. I got home and we hugged and cried together for a while, then called some of our family to tell them. I must say we have the most supportive and wonderful family, friends, on-line buddies and co-workers. People have been there for us no matter what we need whether it's a hug, encouraging word, help with our daughter, food or help around the house. I am so glad we live close to our family and in a small community where people really reach out to help one another. (Thank you all, your help will always be remembered and appreciated!!!).

We now have this serious heart problem to deal with but we still have to figure out what is going on with our little guys kidneys. Just before Christmas we took Drew for an ultrasound of his kidneys and a catheter test where they inserted dye through a tube in his penis and watched to see if they was any kidney reflux. It was determined that there was none further testing would be needed. We have to watch for any fever which could be a sign of infection and make sure there is no decrease in urine output.