My son looks healthy on the outside, but he was born with a serious heart condition called Tetralogy of Fallot, and after a scary birth and emergency C-section, he came into the world as my little miracle.
The day before we were to be released from the hospital, a nurse doing a wellness check on him said, ‘Did you know he has a heart murmur?’ We didn’t. Soon after, our son was sent for tests.
Later that day, our son was diagnosed with Tetralogy of Fallot, something I’d never heard before, by who is now our compassionate and passionate paediatric cardiologist. Dr. B is so good, when she relocated a few months after our son’s surgery, we chose to make an annual drive to the Cleveland Clinic for his cardiology checkups because we love and trust her. At the time of diagnosis, though, I admit I didn’t like her very much. She was the one who had to tell us something was wrong with our baby.
One of the parts of motherhood I was excited about was the newborn pictures. Our photographer did a lovely job, and I am thrilled with the pictures. But I had told her our son had a CHD.
Coincidentally, her daughter also had a CHD and had been repaired. She comforted me by telling me her daughter was healthy and was otherwise an average kid, but I’ll never forget when she told me to appreciate his bare chest as it would soon enough have a lifelong scar on it from the surgery.
Because of the CHD, I felt like I lost my maternity leave with my son. Perhaps I was naïve, but to me, maternity leave was for acclimating to and bonding with your child. Instead, I was hauling my newborn to frequent doctor’s appointments that were sometimes an hour away. Additionally, we were looking for what is called a ‘tet spell,’ a condition where the child turns bluish and can even faint. If this happened, we were to call an ambulance immediately.
I remember one hot summer night after dinner when my husband had fallen asleep on the couch after an exhausting day at work. I was overwhelmed and frustrated because I could not get our little boy to stop crying and fussing. Desperate to calm him down, we went outside and sat on the step of our back porch.
He immediately started improving. I was drawn to the stars and thought of the song ‘Yellow’ by Coldplay. I sang to him as his body relaxed and he snuggled into me. Later, we found out our son did not turn blue during tet spells, so he likely had one that night and we didn’t know.
When he was diagnosed, we were optimistically told our son could be six months old when he needed his repair. But that time was cut drastically short when his pulse oxygen levels started dropping. The hardest day of my life was August 31, 2018, the day my son had open heart surgery.
We were fortunate to be guided to one of the best paediatric heart surgeons at a top paediatric hospital in the United States. But what if our little bundle of absolute joy didn’t survive the surgery? What if there were complications?
I’ll never forget that day. How do you hand over your nine-week-old baby to open heart surgery? What on Earth do you do to occupy the time waiting for any news of his progress? My husband and I lived it and we’d answer those questions the same: I don’t know.
Thankfully, the surgery was a success and complications were overcome, but the experience was something I will always remember with both gratitude and sadness. We feel blessed our child did so well, but we were heartbroken he had to have a surgery like that at all. We have pictures of our son immediately after his surgery and they’re etched in my brain, but they’re hidden for his own privacy.
Thankfully, my son is about as healthy as a child could be with a heart defect. He’s light for his age, but he’s gaining weight, is incredibly active and athletic, and meets (or oftentimes exceeds) his milestones for his age. I can’t think of the last time he was sick with even a cold and that boy clearly loves his life.
Having a first child with a heart condition is confusing and scary, but we try to let him live a full, normal life while he grows and shows us what he can do.
