Our sweet baby boy, Jackson Robert, was born on April 14, 2004, weighing 7 lbs 5.6 oz. When he was born his cry seemed weak to me, compared to how our daughter sounded when she was born, and I had to wake him up to feed him because he slept all of the time. I mentioned this to several nurses and their response was always that he was just being a normal baby. The pediatrician that examined him the day he was born said he heard a murmur and that it was probably nothing to worry about and they would check it again the next day. So the next day another pediatrician examined him and said he also heard it, but they were going to do an echo just to make sure there was nothing wrong.
That was the day our world was turned upside down. As my husband and I watched the echo being done we only saw three chambers on the screen and we knew something was very wrong. When we asked the echo technician if that was the case she responded that the doctor would need to talk to us. She then left the room to call the pediatric cardiologist, who immediately drove from another hospital 1-1/2 hours away to examine Jack. When the doctor was finished examining Jack, he gave us the diagnosis of double outlet right ventricle, mitral atresia, pulmonary stenosis, and transposition of the great arteries. He then told us Jack would need to have the Glenn and Fontan surgeries and possibly the B-T Shunt. The doctor also told us that someday Jack would need a heart transplant. Our baby boy was then airlifted to the Children?s Hospital of Iowa. I was discharged immediately, and my husband and I then spent the longest 1-1/2 hours of our lives driving to the children?s hospital.
It was the most devastating and heartbreaking day of our lives. I kept thinking that it had to be a mistake; this wasn?t supposed to happen to our baby. I couldn?t understand why this was happening to our son, he didn?t do anything to deserve this. We were supposed to be taking our precious baby boy home that day!
When we arrived at the children?s hospital the cardiologists were echoing Jack and trying to decide for sure if Jack had DORV or DOLV because his ventricle was located on the left side of the heart but it had all the characteristics of the right ventricle and it was also turned over and facing the wrong way. They finally concluded that it was indeed a right ventricle. Then when Jack was three days old the doctors decided to perform a cath procedure to enlarge the hole between his atriums to stabilize his oxygen levels and hopefully allow him to grow and get stronger before any surgeries were scheduled.
We finally got to take Jack home for the first time on April 20, 2004. During follow-up visits to the pediatric cardiologist they also discovered he had Ebstein?s Anomaly. By the time he was two months old his oxygen levels started to fall and they decided to do another cath procedure and use a balloon to stretch the pulmonary stenosis in order to allow him yet another few months to grow and get stronger. Jack was able to avoid having the B-T Shunt and was scheduled to have the Glenn surgery on August 26, 2004, when he was 4-1/2 months. By this time he was getting very weak and would work up a sweat just eating a couple of ounces at a time. Jack?s surgery went well with only a few minor setbacks during his recovery. He got to come home on September 1, 2004, on Lasix, 1/4 baby aspirin and enalapril.
Currently he is doing very well and enjoying life as a six month old. He adores his big sister, who is 2 years older than him, and she dotes on him like a little mother and loves to make him laugh and smile. We feel so very blessed for every moment of every day that we have to spend with our sweet baby boy.