The cardiologist confirmed (August 17th, 2022) the original diagnosis, and told us there were some small defects (“a valve leak”) on the right ventricle as well which make the case more complex. Our hospital didn’t have the required equipment to treat Abby after being borned, so the doctor gave us a list of other relatively close hospitals that could take over. They mentioned once more the option to terminate the pregnancy, and we refused again.
After reading a lot about HLHS, and researching hospitals, their rankings, and feeling overwhelmed by all the possible variables, we chose two hospitals which were, in our opinion, the best under the circumstances. Since both hospitals were similar on the “technical aspect”, our plan was to visit both of them and pick the one that made us feel more comfortable. We passed the options to our cardiologist and in a few days we were scheduled to meet the potential medical teams. Both hospitals were around 3 hours from home, one in Indianapolis the other in Chicago, both highly ranked nationally, under some ranking system we still aren’t sure how exactly works.
We first visited Riley’s Hospital at Indiana on September 1st. After a week from the last ultrasound, Abby’s condition had deteriorated a little bit. The cardiologist didn’t see the original “leaks”, but told us the contraction of the heart muscle on the right side was weaker than it should. We walked through the hospital and talked about how everything would work if we choose to deliver there. That day we met several teams in charge of treatments and helping us navigate our new reality.
Another week passed by (September 9th) and we were now in Chicago, visiting Lurie’s Hospital. We didn’t love the location, being in the middle of the city, with a lot of traffic, people, and noise. But once inside the building, everything looked good. A new ultrasound showed the right side of Abby’s heart deteriorating even more. There was some fluid accumulation (called ascites) and Abby was no longer a candidate for surgery, her only option was a neonatal heart transplant. The doctor suggested we cancel the next appointment that day with the surgery team and instead, talk with the people in charge of transplants on our next visit (October 11th). Meanwhile, the doctor talked with experts in Houston and Boston to evaluate the possibility of any kind of intrauterine intervention to alleviate the situation and give Abby a better chance. The answer wasn’t positive, an intervention in our case could make the situation worse. We were told we needed to wait and hope for the best outcome.
Now Abby will have to make it to 39 weeks, and as soon as she is born, she will be put into the UNOS transplant list for a new heart. We did not feel comfortable knowing that for our baby to live, another one had to die. That other baby is someone’s child too.
We went back home, sadder after the negative news on every appointment, but trying our best to keep positive and give Abby the best vibes possible. It was hard, but there wasn’t anything else we could do to avoid Abby feeling our sadness. We tried doing fun things, we even took Abby to a corn maze we couldn’t complete last year. This time Abby was our lucky charm and we finished it!
