Our sliver of hope expanded slightly, like a waxing crescent moon. Once home, the door hardly shut behind us before we began researching Children’s Hospital Boston. We weren’t surprised to learn that CHB ranked first in the nation in six out of ten specialties. Of course, most important to us, CHB leads the pack in researching and treating congenital heart diseases. It did surprise us to learn that the Advanced Fetal Care Center (AFCC) is the only place in the world that developed and performs groundbreaking intervention on the fetal hearts.
We braced ourselves for an excruciating wait after sending all the records and images of Baby Hunter’s heart to Dr Wayne Tworetzky in Boston, so we were shocked to hear back the next day. Dr Tworetzky’s initial impression indicated that Baby would be a good candidate for intervention. Then the wait began. But one week later we got the call we were waiting for: “Pack your bags and come to Boston. If we’re going to do this, we need to do it within the next two weeks.”
The window for attempting an effective fetal cardiac intervention doesn’t remain opened long. At 21 weeks, Baby’s condition had been diagnosed just in time. At 25 weeks, we touched down in Boston. The hardest part was leaving behind then two-year-old Henry in Charleston with his Aunt Annie and Cousin Oliver.
Beginning at 8:00 a.m., Monday, August 15, was a blur of activity: a sonogram followed by a consultation followed by an echocardiogram followed by another consultation followed by a facility tour followed by yet another consultation. Feeling like we were actively doing something boosted our spirits (besides, I can’t begin to describe the kindness and compassion of everyone— top to bottom—at CHB), but the last consultation brought us crashing back to reality.
Good news/bad news: Baby’s heart was not yet hypoplastic left heart syndrome (a complex domino effect which cumulatively leaves both left chambers of the heart severely underdeveloped), but we learned that the aortic valve was completely closed and the mitral valve was leaking badly as a result of the blood sloshing back and forth between the left atrium and ventricle with no place to go other than back to the lungs whence it had just arrived. Equally worrisome, the constant unrelieved pressure on the left chambers had left the left ventricle stretched and weak. The only option was for the intervention team to stick a hollow needle into Elisabeth’s womb, through Baby's chest and into the heart, which at that time was roughly the size of my thumbnail, and into the left ventricle. The target: thread a catheter through the needle into the tiny aortic valve and dilate it with a balloon to allow blood to flow in the right direction. Before our arrival, the team had done 139 fetal interventions. By Tuesday afternoon, we would be 140.
Thank God the procedure was scheduled early Tuesday morning. The intervention team allowed me to walk beside Elisabeth as far as those ominous double doors leading to surgery, but I was allowed no further. Then, more than ever, the reality of how helpless I was in the situation hit me full force. I understand the anguish of David in Psalm 140 (Eripe me, Domine) as, encompassed on every side by his enemies, he pleads the hopelessness of his situation. But admitting that his own strength has failed allows him the freedom to embrace the real source of his deliverance: “I know that the Lord will maintain the cause of the afflicted.”
Left alone in the room, I did two things to while away the time and distract myself: I prayed and I translated a poster from Spanish (which I don’t speak) into English. The poster extolled the virtues of making skin-to-skin contact with newborns.
I wondered if we’d ever even have an opportunity to hold Baby Hunter.
The first attempt was unsuccessful, but while the Chief of Pediatric Cardiology, James Lock, and the Dream Team stood around the surgical table deliberating the risks of trying again, Elisabeth (who was awake during the procedure) overheard Dr Tworetzky say, “They came from Charleston to give this baby a chance. They know the risks.We have to try again.” The team decided to make a rare and risky second attempt to thread the cath into the valve for dilation. It worked beautifully. The next day, we learned that while the procedure was a technical success, we were far from out of the woods. Only time would tell. Nothing left to do now but to wait three months while closely monitoring the heart. And praying, like King David in Psalm 140, “Deliver us, O Lord,” knowing that He would maintain the cause of number 140.
To be continued.