After five years of trying to conceive and numerous attempts with IVF, resulting in a heartbreaking miscarriage, we finally conceived naturally in June 2015! Our heads were in the clouds. Until our 20 week anatomy scan, when our world turned dark and our joy was tested. When the ultrasound technician asked if we had done the genetic screening (answer was no) our heads started spinning. Why would she ask us that? What is wrong with our baby? We didn’t get answers, just silence as she scanned and scanned and scanned. We asked if there was something wrong and she hesitantly said “yes, I think the baby has hypoplastic left heart syndrome”. That meant nothing to me. I assumed it was something that could be fixed until the doctor came into the room to confirm what the technician saw. We were told the condition is “incompatible with life”, “this is not a life”. Gut punch!
Two days later we were getting a confirmation by a pediatric cardiologist. Prior to this appointment, I re-educated myself as to how a heart works. The take home from that lesson was the left ventricle is the powerhouse and MOST important part of the heart. We are both research scientists and we did a quick search in the medical literature on the topic before meeting the cardiologist. When there are surveys asking medical professionals what they would do if it was their child, you know this isn’t a good situation. When 55% of doctors would choose an option other than surgery (Kon, A et al. 2013), that is very telling that there are no guarantees, no “cures” for this condition. I asked our cardiologist what she would do. She was very non-commital and said it’s a very personal choice. I’m thankful that we were offered every option- termination, comfort care, or palliative surgery (though we felt a gentle push toward surgical intervention). Unfortunately, not everyone is given all options.
After the HLHS confirmation, we struggled in making a decision from the impossible choices in front of us. We ran back to the current science and medical literature to learn all that we could. Shockingly to us, the surgery option was off the table pretty quickly. The risks far outweighed the possibilities for a good quality of life, long-term, even with 20-30 years of surgical “advancements”. Yes, there are “success” stories, but the loss and long-term complications are much more common, but not talked about. The details of feeding difficulties, neurological impairments, multiple organ failures in addition to risks of seizures, strokes and the all encompassing possibility of heart failure at any given moment are facts often not provided to you unless you ask the right questions. Learning and digesting this information left us with two heartbreaking choices. We dragged our feet in fear of making the wrong decision for our very much loved and wanted child. Our pediatric cardiology nurse was pretty intuitive and saw our struggle and recommended Amy Kuebelbeck’s book “Waiting with Gabriel”. She wrote what my heart wanted for our child, a life of love and peace.
Amy’s book was an incredible resource for us. It allowed our family and friends to understand the situation and helped us build an unwavering support system. My OBGYN also offered amazing support, was by our side every step of our journey, and read “Waiting with Gabriel” to educate herself as to what our needs would be. She pulled together a wonderful team. The hospital had little experience with comfort care, but that was not evident in the warmth and heartfelt care we were provided.
Leif decided he wanted to meet us on March 2, 2016. He arrived at 6:11 AM and looked directly at our faces as we spoke to him. There wasn’t a thought in my head that he was leaving us. I just loved him purely. Our family was with us as soon as they could be. He was surrounded by love. His vitals were good, so the next day we decided to go home with planned hospice visits daily. We lived and loved fully one day at a time. Every day his vitals were normal. Pulse ox at 95%! He breastfed like a champ. He did all normal baby things. One day became one week then two then three weeks, accompanied by celebratory birthday parties! The first two weeks he only knew the embrace of loving arms. As family had to go back to work, Leif enjoyed sleeping in a bassinet next to our bed. Because his good health was so unusual, at three weeks we had an ECHO. HLHS was confirmed and we learned that his PDA was wide open. The PDA typically closes between 24 and 72 hours, after that the baby’s heart must fully function. An open PDA allowed him to be with us for this long, when we had planned for only a few hours. An unclosed PDA would not be good for a normal baby. The pediatric cardiologist told us that we were fortunate to know a bond that those who chose surgery would not know due to the medical barriers that must be in place. Unfortunately, there was no way of knowing how long he would be with us. We were going to love every second we had with this kid.
Leif gave us 32 days! Truly the most beautiful but difficult thing we’ve ever had to do. He was worth it! We are so grateful for the gift he gave us and so very proud of the way we parented him. We love you Leif, dearly and endlessly.