Emberly’s Story

Emberly

6-months old, rocking her scar.

Warning: This post contains photos post-surgery.
This blog post is written by Emberly’s mom, Haley.

“My daughter Emberly's heart defect was not noticed until my 41-week scan for induction.  The first time her dad and I saw Emberly's heart was at my 12-week scan when we heard her heartbeat and got a quick glimpse of it beating on the ultrasound screen.  The next time we got to see Emberlys heart was during her 20-week scan.  The technician didn't say much throughout the scan but did stop a few times to show me some of her features such as her face, heart, stomach, legs, and feet.

I saw my obstetritian a month after that ultrasound who told us our baby was perfect.  I worked as a teacher right up until I was 39-weeks pregnant and was referred for an induction ultrasound at 41-weeks to ensure there was enough fluid left as she was past her due date.  I went for my induction ultrasound on December 23, 2022, and during the scan the technician mentioned to us that she was not seeing some things she wanted to see clearly so she was going to call a doctor in to have a second look.  A doctor came in and after about five minutes of looking on the ultrasound monitor told us that she is noticing shadows in our baby's heart which may or may not indicate there was a hole.  A hole that should not be there. She explained that because I was 41-weeks pregnant and there wasn't a lot of space left, that it could very well be just shadowing, but that there was nothing else they could do at that point.  She did mention that she took a look at my 20-week scan and noticed the same thing, and her exact words were, "I don't know why it wasn't appreciated then"...  We were sent on our way and told to tell the delivering doctor that our baby needs to get her heart checked as soon as she is born.  I will never forgot that car ride home.  We had so many questions.

I did not hear from my doctor or anyone else until I was called in for an induction on the morning of December 27, 2022.  I gave birth to Emberly at 10:41 p.m. that night.  When I was having contractions her heart rate was dropping which was a clear indicator to everyone that something was wrong.  As soon as she was born she was immediately taken to the NICU at St. Boniface Hospital in Winnipeg, Manitoba.  We met her cardiologist at around 1:00 a.m. on December 28, 2023, when we were first informed that Emberly did in fact have multiple heart defects and would require immediate heart surgery in Edmonton, Alberta.

Emberly, one week old and post surgery.

We were transferred to the NICU at the Women's Hospital in Winnipeg the next day and flown out to Edmonton on December 29, 2022.  On January 3, 2023 Emberly had a seven hour long surgery that included a VSD closure with baffling of the LV-neo-aortic valve, ASD closure, arterial switch procedure, aortic arch repair, and a PDA ligation.  She had her first catheterization procedure on January 23, 2023 to place a stent in her left pulmonary artery and she spent a month in the hospital before coming back to Winnipeg and ultimately home for the first time on Valentines Day in 2023.  We have already been back to Edmonton for her second catheterization procedure this past September 2023 where she had a new stent placed and we are expected to return for her third one on the near future.

We never in our wildest dreams imagined we would have a medically complex child but have learned to embrace it.  Although we did not have time to prepare for our situation and are still dealing with the trauma from her birth, we are grateful that our daughter got the help she needed from the exceptionally talented surgeons at The Stollery Children's Hospital and will forever be in debt to the medical professionals who played a role in our daughters medical journey.  If I can offer any advice to the parents of a medically complex child, trust that you are the expert of your child and advocate for them any chance you get.

The friendships we have made and the family's we have met through our journey so far are a true testament that life only gives you what you can handle and to embrace the good with the bad.  Emberly is happy and thriving and we don't take for granted any time we have with her.

Thank you for taking the time to read our story.

Emberly, Haley, and Jeremy”

Your donations will help us provide specialized training for sonographers, helping kids like Emberly receive their diagnosis at the 20-week anatomy scan. An early diagnosis gives families the time to prepare for the birth of their medically fragile child.