Henry arrived after an easy pregnancy and smooth delivery. Soon after his birth one of his nurses casually mentioned that she heard a heart murmur. I convinced myself it was just a benign murmur, something that would fix itself or just have to be monitored because Henry was doing so well.
The hospital pediatrician referred us to Cincinnati Children’s Heart Institute, and on Henry’s fourth day of life we found ourselves in the waiting room. As our cardiologist, Dr. Madueme, gently told us Henry’s echocardiogram showed that he had tetralogy of Fallot, I burst into tears
I knew immediately this diagnosis meant open heart surgery on our baby. Tetralogy of Fallot is a congenital heart defect comprised of four known defects that typically occur together. These include a ventricular septal defect (VSD, or hole in the heart), pulmonary valve stenosis (narrowing of the pulmonary valve), overriding aorta, and right ventricular hypertrophy (thickening of the walls of the right ventricle).
Tetralogy of Fallot requires an open heart surgical repair for survival. The cause is unknown, and we will probably never know why Henry’s cells danced and divided their own way to form his special heart.
The next weeks were filled with so many questions and fears. As time went on, and Henry did well, our fears changed from, “is he going to have a health crisis at home?” to instead focusing on the anticipation of surgery. Henry had his surgical repair on November 17 with Dr. Tweddell and a wonderful OR team. He had a relatively smooth surgery and post-operative course, and we were back home with him quickly.
The incredible team members in the Heart Institute ushered us through this part of our journey with such compassion and care. I will never forget driving home from the hospital on the day of discharge, looking back at Henry in the backseat and then over at my husband in disbelief as we asked ourselves, “Are we really on this side of things?”
It is amazing how quickly our focus was able to change back to looking toward the future. For six months we had lived solidly in the moment, trying to enjoy our time with Henry and not rush the weeks by as we waited for surgery. Since the day he was diagnosed, we had been reassured over and over again that after his repair he could lead a relatively normal life. Those words were certainly comforting, but it was hard to focus on them when the anxiety over his surgery was hanging over us.
We expect one more procedure to repair his heart when he is a teenager, but we are hopeful it will be a less invasive procedure by that point. He will have to be followed by a congenital heart specialist for his entire life. We’ve been told that we can expect that he will have a normal life expectancy and be able to do all of the things one dreams of for their children.
Henry is now 10 months old. Surgery was 5 months ago. Our current focus is helping Henry achieve the developmental milestones he hasn’t yet achieved due to having decreased energy earlier in infancy and from the effects of his surgery.
Despite his eventful first year of life, he is doing so great! He is happy and social, loves his brother, loves to eat, and greets everyone he meets with enthusiasm and a smile. I put him to bed every night and pick him up every morning whispering a thank you for the gift of his mended heart. We are emerging from this past year overwhelmingly grateful for the care Henry has received and for the support we have been handed from our friends and family.
So what is life going to be like now? We have hopes for as much normalcy as possible. We are already joking that, based on Henry’s developing personality, it is unlikely that he is going to be our cautious child. We expect him to pursue adventure headfirst with a curious nature. I’m sure this will cause me years of anxiety, but at the end of the day, I know I am going to go to sleep still whispering thanks that Henry is able to live any kind of life he should choose.
That is our miracle – that choice is what our cardiologist, surgeon, and the team in the Heart Institute have given our Henry. We are forever thankful that Henry has the option to choose his path, to pursue any adventure, and to live his life as big as he could possibly dream. Hope and gratitude carried us through this past year, and it is with hope and gratitude that we look toward Henry’s future.