Mila’s Story
Mila at a year old beside a picture of herself just after her first open heart surgery.
This blog post is written by Mila’s mom, Monica.
“Mila was born May 20, 2021 in Winnipeg. I had had my regular anatomy scan at a hospital and heard back from my doctor that everything looked great and there were no concerns. It was documented that my husband has a bicuspid aortic valve but no one ever seemed concerned about that or did any more follow up in my pregnancies. Because of that and because no one else was concerned about it, I didn’t think it was any more likely that my children have any congenital heart defects.
Funnily enough she was my only baby (youngest of 3) who I never had a fetal assessment done with near the end of pregnancy. She had an uncomplicated birth and she saw a pediatrician before we left hospital who gave us the all clear. One strange thing was that her oxygen saturations were on the lowest end of “normal” when they came in to do that testing the day after she was born, but again I thought nothing of it.
She seemed like a sleepy baby but I was busy with 2 other kids, so again didn’t think much of it. I shake my head to this day that it took us so long to see something wasn’t right but when everyone tells you that you have a healthy baby, you feel crazy to think otherwise. Eventually on day 6, she took a turn and seemed even more sleepy than usual, wasn’t feeding, and her temperature was under 36 degrees. We rushed to the ER as she suddenly started having very laboured breathing.
They took us into the resuscitation room immediately and it was all a blur but in a matter of an hour or so, discovered she had a bicuspid aortic valve (like her dad), a very large VSD, and coarctation of the aorta. Within less than 12 hours of arriving at the HSC ER in Winnipeg, we were already in Edmonton at the Stollery awaiting surgery.
She has since had 2 open heart surgeries and a catheterization. We have more procedures and surgeries in our future but we all feel very lucky that she made it through those early days and is here with us today as a happy 2 year old.
I always think of what those early days navigating this journey with Mila would have been if we had known before birth.”
Here’s how you can help kids like Mila receive their diagnosis before birth.
