Jana and I were sitting at Nationwide Children’s Hospital Heart Center. Excited for a second child, we had a routine ultrasound a week before. We weren't too surprised to learn our baby was going to be a boy as my dad's side of the family had 13 boys in a row. However, our little girl, Juliana had broken the "streak" when she was born in 2017. At first, I was nervous about taking on a girl-- there weren't many of them in my family and I had little experience. She is such a joy! Turns out, I do just fine with a baby girl. Juliana had just turned two when we learned we were expecting. This time around I told everyone… girl…boy….doesn’t matter, just so our baby is healthy.
As I stood up from an hour long conversation with the fetal cardiology (heart) team, I remember feeling almost woozy. I felt as though I was having an out of body experience. Jana and I had just gripped the reality that our unborn son was diagnosed with hypoplastic left heart syndrome (HLHS). When I was in medical school, we briefly learned about this rare condition, but not a lot was known as the overall prognosis remained uncertain. All I knew was that the left side of the heart pumps blood to all the vital organs and if it functionally does not exist, there is no compatibility with life.
The cardiologist explained the options. One of them was to terminate the pregnancy, which was not conducive to our beliefs. Even though he was only 20 weeks along, we had already come to love and value the life and blessing our little boy would give to the world. The second was compassionate care, or "hold your baby in your arms until he passes". There is no cure for HLHS and without major surgeries, the condition is lethal soon after birth. I thank God that our baby (Noah Lawrence) will be born in 2020 and he will be born in the United States.
The first two "options" are the only choice for parents in most parts of the world, even developed countries. The day of our cardiology appointment, we learned more about staged “palliative surgeries”. These are complex and require understanding of cardiac anatomy. We had a long coversation with a cardiothoracic surgeon who explained the procedures in great detail. Basically, the non-functional pump on the left side of the heart is converted where the right side does all the work. Jana and I chose this third option, giving Noah the best chance at a long and happy life.
We pray that God takes something that is "broken" and makes it "beautiful". We believe that we are all God's children and have a higher purpose. You will find some stories about Noah in the blog a.k.a The Journey and click About to find out Why Cross Runner's Heart?