I want to take this opportunity to talk about my fifth day as a mom, as this was the day we found out about Atticus’ heart condition. As expected this was a day that was equal parts uplifting and terrifying.
If you take anything away from this post I want it to be that when dealing with illness in the family, the single most important thing you can do is remain optimistic, no matter how small that optimism may feel. Hold onto it when you find it, even if it presents itself in minuscule doses and in the most unexpected of places.
After finding out you have a potentially sick child, time tends to slow itself down. It becomes tangible, like a weight you can feel resting heavily on your shoulders. I remember telling my parents over and over again that I didn’t want to wish away my time with Atticus, yet I needed him to magically be 8 weeks old.
The paediatric cardiologist had rebooked us for 7 weeks down the road and until then we would be left in limbo. This was a situation where only time would tell, and hence an 8 week marker had been set to see how the valve developed as Atticus grew.
Gibby and I left the cardiologists office and headed straight to our family doctors. The appointment had been made in advance to check on the babies weight gain but now a new urgency was attached to our visit.
When we presented the news about the bicuspid valve, our doctor responded in his classic no nonsense manner. First he asked if we knew the severity of the diagnosis, which we did.
“Mild” I stated. My new favourite four letter word.
I hadn’t written anything down from the appointment (unprepared first time mom over here) but I knew out of a potential score of 4, Atticus’ valve was ranked an overall 2, or was otherwise classified as “mild,” the next best thing being a 1, or “trivial.”
He smiled. “Ok guys” he said, rubbing a hand over his face. “I have had several patients with this condition over the years and do you want to know how many of them have needed surgical intervention? One.” (Small grain of hope.)
“Also,” he continued in his ever practical manner, “it’s important to note that this condition is hereditary which means it has been passed down from one of you.”
Gibby and I exchanged confused looks. From one of us? We had both lived busy, active lives. He grew up playing rep hockey and lacrosse, and I was (pre pregnancy) a long distance runner. The cardiologist had given us many worst case scenarios, one of the most gruesome being the fact that severe bicuspid valves can cause “sudden death” (yes, those exact words) when the heart is put under abnormal stress. If one of us had the matching valve and had never even known then maybe our baby could live a normal life too (another small grain of hope.)
“The only catch” he continued, “is that the bicuspid gene may not have produced a valve deformity in either of you. It may have presented itself in a sibling, or a parent instead.” I felt the grains of hope slipping away. If neither of us had the matching valve than we may never find out who did, unless every member of our family got tested. This left us without context. Without context we would remain in limbo, existing in a constant state of worry over the health of our son.
We left the doctors office, requisitions for our own heart tests in hand, feeling dejected.
Fast forward to an hour later. I have an app on my phone called Baby Center and I decided to put a post up asking if any of the other moms in my “March baby club” had experience with a bicuspid aortic valve. If the stats are true and 1-2-% of the population is born with this condition, then surely someone would be able to relate to what I was going through.
The outpouring was instant. I connected with a mom whose son had it and was living a normal busy life. I heard from a woman who worked at a cardiology clinic who confirmed many of her patients had it and were all doing great, only dropping in on an annual basis for a scheduled check. I listened to the feedback of these strangers and I cried tears of relief. You see, those small grains of hope came together to form something bigger – a feeling of optimism.
Waking up on my fifth day as a mom I had no idea what challenges lay ahead, but isn’t that every day as a mom? Every day as a human being? I found hope in unexpected places – the possibility that I too had a heart condition (oddly enough) and also in the kindness of strangers.
Hope is what carried me through, right up to his 8 week appointment when we found out his valve is still thankfully, “mild.”
And so I will say it again. Choose hope, and hold onto it when you find it, even if it presents itself in minuscule doses and in the most unexpected of places.