Today we saw the pediatric cardiologist for the last time. I drank a bunch of sugar soda today to try and get her to move into a different position. It worked after a little bit. During the last half of the fetal echo, she started to move around and let the cardiologist see her heart.
He got much better pictures. He saw that not only did she have the small right ventricle, she also had Tricuspid Atresia and ventricular septal defect (VSD). The tricuspid valve lets blood flow from the right atrium to the right ventricle. The tricuspid valve was never formed. So the right atrium had nowhere for the blood to flow. The right ventricle was off to the side and not connected at all to the right atrium. Also between the two ventricles, there was a hole (VSD) that let the oxygenated blood coming from the lungs mix with the de-oxygenated blood from the body. All of this wouldn't give her enough oxygen to survive.
He discussed the surgeries. Like before, there would be 3. One days after birth, one at 6 months, and one at 18 months. These surgeries would be palliative (not a cure, just a treatment) and she wouldn't have 100% oxygen until after the last one. Because the first 2 surgeries just sort of shifted the blood vessels and moved blood around, her oxygen saturation (amount of oxygen in the blood) would only be 75-80%, where most of us live 95-100%. After the last surgery, it would be 100%. Unfortunately, those 18 months are key to brain development and other cell growth. Cells don't grow without oxygen. She would likely have developmental delays, lack fine motor skills and would be small for her age. Not to mention the pain of the surgeries, 2 out of 3 of them being open heart. Her 20 year survival rate was 60% and her chances of living to 10 years old was 70%, which are not strong odds. At some point, she would have to have a heart transplant.
We had a lot to think about. I felt like such a selfish person if I said that we shouldn't bring her into this world because of things that we may not ever be able to do. And then I felt like bad mother because I didn't want her to have to go through all of that so maybe we should just let her go. My sister pointed out that I would be a selfish person to bring her into this world to go through all of that pain and suffering just because we wanted her here so badly. She would never be able to have children with a heart like that, and what if she died after only 15 years? That's not fair to her. I could imagine asking us, "why me? why do I have to die now?" Because we chose to bring you into the world. It would never be fair to her and I could never forgive myself. I would feel like it was my fault that she was dying. It would be more compassionate to let her go and take all of her pain for her so that she would never have to suffer.
Adam and I decided that the best thing for her was to let her go. She would never feel pain and always be safe.
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