The Road from HLHS to Transplant

Hope is our first and only child and her journey has been marked by one surprise after another, right from the start. We were convinced we were going to face a tough road to conceive, so imagine our surprise when I realized I was pregnant just 3 months after our wedding. Shortly after finding out that our growing baby was indeed a little girl, we heard the words that changed the pregnancy and our lives forever, tainting what should have been a joyous moment with a type of fear neither of us had experienced before. “There is something wrong with your little girl’s heart - and it’s serious - you need to see specialists right away”.

After a flurry of rush appointments were made, a few days later we had our diagnosis: Hypoplastic Left Heart Syndrome. A syndrome that had John or I been born with, would have been a terminal diagnosis. Today children with HLHS have a palliative path of three open-heart surgeries; the first of which would be when she was days old. Because we found out so early, we were also presented with an impossible choice - continue with this pregnancy or terminate it. Together, we decided that if the advances in the care of children born with HLHS could give her a fighting chance then we would have Hope. And so we did and it became her namesake and we call her Hope to remind us and everyone around her that miracles are as real as every breath she takes.

After a rather uneventful and quick birth, I was granted 60 precious seconds with Hope in my arms when she was first born before she was whisked off to the NICU to begin the first of many life-saving interventions she would need. Her first surgery occurred when she was 7 days old.  She was a single ventricle baby - her body being sustained by only one beating ventricle in her heart. This came at a cost, though; she had roughly the equivalent of a triple workload on her one remaining ventricle. Her next surgery would be a little over 2 months away at the earliest and everyone was very nervous. We knew that the interstage period was dicey, with some hypoplasts “accepting” the new workload, while others just don’t. We managed to leave children’s after 6 bumpy weeks and were home for two glorious days. On only our third day at home as a family, she started to show signs of feeding intolerance and passed a threshold to bring her to the emergency room so she could be seen by the Single Ventricle Team.

We naively thought we would need a few tests and maybe adjust a few meds or her feeding schedule and we’d be right back out the door, as we’d been prepped to expect a few short hospitalizations during the single ventricle interstage period. Needing a heart transplant wasn’t even remotely on our radar. It had never been mentioned except under the context of, “...20+ years from now she may or may not require this as a next step.” After 3 days of diagnostic procedures, our lives took yet another sharp turn. We weren’t going home anytime soon. Hope was in heart failure and could only survive through a heart transplant. Transplant had previously seemed so scary and intimidating - not to mention we had spent months educating ourselves on the unique needs of single-ventricle babies only now to switch majors to transplant!

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