Reiss MaeLene was born October 3, 2012. Reiss was diagnosed with some sort of congenital heart defect (CHD) at a gestational age of 20 weeks. From that ultrasound, we went on a whirlwind of new information, trips to St. Louis Children’s Hospital (SLCH), and doctors visits. We were induced at 39 weeks, Reiss had her first catheter procedure to place a stent in her PDA when she was 7 days old, a second catheter procedure to widen the stent when she was 3 months old, and open heart surgery at 10 months old where doctors performed a Glenn procedure.
In February of 2015, Reiss started having hemoptysis (coughing of blood) consistently. Over the next three months, she was in and out of SLCH four separate times trying to combat, diagnose, and treat the issue. The hypothesis was that her body was creating extra collaterals, which were then bursting in her lungs, causing the hemoptysis. Reiss was then scheduled for the 2nd surgery necessary to make her heart a single ventricle heart – The Fontan – for August 2015.
Unfortunately, the Fontan did not guarantee hemoptysis will subside, or even diminish at all. Therefore, we decided to seek multiple second opinions. When Reiss’ surgery was postponed due to a lack of bed space in the CICU at SLCH in August 2015, and all three of our second opinions came in with the opinion to NOT do the Fontan, we decided to cancel the SLCH surgery all together and look for a new hospital.
Reiss will have open heart surgery at Texas Children’s Hospital at the end of May 2016.
Thank you for following us on this journey!
Here are the issues with Reiss’s heart…
- L-Transposition of the great arteries (LTGA)
- Ventricular Septal Defect (VSD)
- Atrioventricular disclosure (also known as Ventricular Inversion)
- Pulmonary atresia
- Double outlet, right ventricle (DORV)