Finley’s Story

Meet Finley!

Diagnosed with Coarctation of the Aorta at 5 days old.

“On March 22, 2016 our third child was born, our first son, Finley. He was born full term, after an uneventful pregnancy. But when I first got to feed him, I noticed he wasn’t much interested in eating. 

Within a few hours a nurse had a concern about his blood sugar levels and he was taken for observation in the special care nursery, while we rested. A couple more hours later, Finn’s breathing became rapid. He was admitted to the NICU as an x-ray revealed aspiration pneumonia. 

I thought it would just be a few days, while he did a round of antibiotics to help clear up his lungs. And while he did get slightly better for a short time, his rapid breathing came back worse. 

On day 5 in the NICU I came in to a neonatologist checking his femoral pulses. She informed me that he would be having an echocardiogram and we would hear back from a paediatric cardiologist with the results. My mind began to spin, I thought it was just his lungs, now what’s going on with his heart?

I will never forget walking back in to that NICU when I got the call. I knew it was bad news. The doctor had the unfortunate job of delivering the diagnosis,
“Your son has Coarctation of the Aorta which will require surgery. He will be air lifted to Edmonton as soon as possible.” 

How was this even possible? He seemed fine when he was born! I had two ultrasounds during my pregnancy with normal results. 

The next day we were flown to Edmonton where Finn waited a week for his surgery. I am happy to say that he had a successful surgery at two weeks old and was home just before he was a month old. While there though, we discovered other congenital heart defects including a VSD, a narrow transverse arch and a bicuspid aortic valve. Finn continues to have annual check-ups with the team of paediatric cardiologists here in Saskatchewan to keep an eye on all these things. 

Sometimes I still wonder, was it good that I didn’t know ahead of time about Finn’s heart defects? The only reason I can say yes to that, is so that I didn’t spend my pregnancy worrying. 

What would I have done differently had I known? I would’ve packed more than 1 change of clothes to the hospital. I would’ve probably delivered him in Saskatoon and not Regina, so he would’ve been near his cardiologists. I would’ve had childcare arranged for our daughters. I would’ve packed my diaper bag differently and had snap sleepers instead of zipper ones, so that all his wires could go through his clothes when he finally got to wear them. I would’ve had lodging lined up for us. My husband would’ve made preparations to be away from work. I wouldn’t have bought a case of nectarines from Costco that day, to sit and rot on my counter. He would’ve had surgery much sooner. I would’ve prayed for a miracle for my son.

Today Finn is a happy, healthy little boy and I am so grateful for all those who looked after his heart! I hope that by sharing his story more awareness will be brought to the need for improving outcomes and prenatal detection rates for infants with congenital heart defects.”

Written by Amanda, Finley’s mom.