Red Balloon 4 Heart Defects

Sharing my Elliott’s story in the hopes that it will help another family. Elliott is now 18 years old and a senior in high school.

Part One:

Elliott’s story began at a 20 week ultrasound. During the ultrasound it was evident that the tech was spending an inordinate amount of time looking at the heart but of course never said anything. A couple weeks later I’d receive a call giving the report, “Appears to be a single ventricle heart”. I was then transferred to Pediatric Cardiology in Syracuse. Of course there was no great urgency on their part to get me in and I had to wait 3 weeks. Finally the day of the appointment came. I was praying that it had all been a mistake but unfortunately it wasn’t. The cardiologist said, “As heart defects go, this is as bad as it gets, except that we do have some options.” He then went on to outline the 3 staged surgical repair that is currently the standard of treatment for single ventricle hearts. He said the baby would have surgery very soon after birth (the Norwood procedure). Then, if he survived he would have a second surgery somewhere around 6 months (the Glenn) and then a third surgery (the Fontan) down the road. With each surgery the chance of survival increased so once through the Norwood he had a better better chance of surviving the Glenn. After explaining the surgical options he said, “These defects are so severe that we would support you in choosing to do nothing. We would simply make him comfortable and let him pass”. For us, that was never on the table, however I have met people who made that terribly difficult decision and I place no judgment.
The pregnancy went on quite normally except that I was transferred to a high risk OBGYN in Syracuse and would continue to see the cardiologist. They explained as long as he was inside me, he was stable. He grew to be my biggest baby at 8.14 lbs and 21.5 inches long. He was given prostaglandin via a small line into his bellybutton to keep the patent ductus open until he had surgery. That first surgery took place at one week of age. Elliott was in the hospital a couple weeks post op. He developed chylothorax and was subsequently put on low fat formula. The chylo slowly resolved and we were able to go home where he thrived. He would have his second surgery at 9 months of age.