Hello! If youve ever met me i've probably told you about my amazing son Samuel, and that is probably how you ended up here. If not here goes!
Sammie was diagnosed with a single ventricle heart at his 20 week ultrasound. At the time they werent really sure how it was going to look when he was born or if he was even viable. They weren't sure his heart was going to be able to pump blood to his lungs, which is fine for a fetus but not for a baby. The only way to know was to wait and see.
Sammie was born August 18, 2018. A very lucky birthday for a Jewish baby, it has two 18s! They performed and ECHO immediately, which gives a 3D image of his heart anatomy. From this we learned that Sam had complete mitral atresia, multilevel pulmonary artery stenosis, pulmonary valve stenosis, Double outlet right ventricle, double transposed great arteries, ASD, VSD, hypoplastic left ventricle and tricuspid regurg. This is a lot of different defects but it all added up to mean that sam's heart functioned as half a heart, his artia (the top chambers) were connected as one, and so were the ventricles (the bottom chambers). This meant that the old blood from his body and the new blood from his lungs all met together and were pumped back out to both his body and lungs as a mixture. It was actually pretty neat to see how his heart managed to form in a way that was functional for him to live!
Unfortunately, it was not a systainable function and he did need open heart surgery. His first one was performed at NYU Hassenfeld Children's Hospital by Dr Ralph Mosca at a little over two weeks old. He was a champ through the whole thing and we got to bring our miracle baby home two weeks later.
The process to "rewire" a single ventricle heart is generally done in 3 planned surgeries. Sam completed this process last fall, with the second done just before he turned 7 months old, which he rocked again and was home in a week! The third surgery was the biggest and toughest. He was in the hospital for two weeks and continued to need close following at boston children’s heart center for six months to manage the effusions.
However this rewiring is a temporary fix. Sam actually needs another repair in the next few years for a leaky valve, but even then life is wait and see.
So basically, the hope we heart families have, is that someone develops a better treatment options before our Heart Warrior runs into any major complications. There have been some really great strides made in recent years. Dr Rodan is working on a mechanical pump to take some of the work off the heart and lungs. Another team is working on growing artificial hearts from the patients own stem cells. A third team is working on recycling hearts that arent ideal for transplant by infusing them with the recipients stemcells so the body is tricked into thinking it is not foreign.
Who knows what other great ideas are lurking out there waiting for further funding. Even though CHD is the most common birth defect and the most common cause of infant loss, it is extremely underfunded. So we are bearing our souls and sharing our journies as heart families in hopes that you all will make a generous donation to research efforts.
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