It was the morning of August 24, 2010. Curt and I were intently staring at the screen which was monitoring the ultrasound we were having of our 18.5 week old baby. The technician had been examining the baby’s heart for at least 30 minutes. Finally, she asked me to roll on my side for several minutes to try to get the baby in better position and she left the room. We looked at each other and Curt asked me if I thought there could be a problem. It was the moment you dream up in your worst nightmares. Neither of us wanted to admit it, but there was obviously something wrong.
We were referred to a pediatric cardiologist, who diagnosed our baby as having severe aortic stenosis. No words can describe the profound sense of loss and fear that occupied her office as we heard this news. We were devastated. Two weeks later we returned for a follow-up echocardiogram, which found that the condition had worsened. Do nothing and our baby would be born with hypoplastic left heart syndrome (HLHS). This is an incredibly serious congenital heart defect which requires three separate open heart surgeries in the first few years of life. When presented with this diagnosis some families choose to terminate their pregnancies. Others choose not to intervene when their baby is born and allow him to die peacefully. For us, it was an instinct that we rarely even verbalized – we would choose the option that gave him the best shot at life.
Our cardiologist told us that some centers were performing a fetal intervention where doctors use catheterization to open the aortic valve of the baby while in utero. The goal is to allow the left side of the heart to develop prenatally thereby avoiding HLHS. We were introduced to the team of doctors at Boston Children’s Hospital, led by Dr. Wayne Tworetzky. Tworetzky’s team felt that we were good candidates for the procedure; however we needed to act fast in order to optimize the timing of the intervention. I will never forget that first conversation I had with Dr. Tworetzky as he explained the intervention to me. His devotion (it’s beyond dedication!) to his work and patients was crystal clear. It was the first moment since the initial ultrasound that we felt some glimmers of hope.
Soon after we loaded up the car with our daughter, Carly, and both grandmas and headed north to Boston. Those days in Boston were a bit surreal, but we felt peace in having made the right decision, regardless of the outcome. The procedure went quite well technically (thanks to the most highly skilled physicians in the world), and after some tense moments, it appeared successful. Perhaps equally important, the team was patient and knowledgeable and answered all of our many questions. Each physician added their own piece of wisdom.
Fast forward three months to January 14, 2011, the day we welcomed our miracle baby, Griffin Edward Nusbaum, to the world. Griffin was born pink and crying in a snowy Boston, MA. On the first day of his life he underwent a balloon catheterization of his aortic valve under the care of Boston Children’s miracle workers. Griffin is now five months old and thriving. His spirit and resilience astound us on a daily basis.
We know Griffin will need additional procedures and surgery throughout this life, but his heart condition, prognosis and treatment was completely altered by the care he received. There are no words to describe our feelings of gratitude for the gift of our son. Anyway you look at it, the doctors in Boston are changing the face of this disease with their ability to challenge boundaries and think outside the box.