Mother who lost 2 daughters to heart defects helps search for a cure

Adalyn’s Mom is sharing publicly for the first time her heartache of losing not one, but two baby girls to CHD.
Published: Sep. 7, 2021 at 6:06 PM EDT
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GENESEE COUNTY, Mich. (WJRT) - Each year, 1 in 100 children are diagnosed with a congenital heart defect.

Families living that reality are asking for your help supporting research of the most common birth defect. The Congenital Heart Walk is happening Sept. 18, at the Rochester Municipal Park.

One mid-Michigan mom participating again this year, walks for her two daughters lost to CHD.

“The reality is nobody thinks they’re going to be a heart family, nobody,” Heather West said.

Her first born daughter Adalyn was diagnosed with a congenital heart defect the day she was born in Sept. 2016.

“When they said she had CHD I had to google it,” West shared. “I had no clue what it was and it’s always, that’s always like the biggest disservice to me, like expecting moms don’t know that this is the number one birth defect.”

It can be diagnosed prenatally, but the first time mom and dad never thought of that.

“She fought like the most courageous battle I’ve ever watched a kid fight and passed away eight months later,” West said.

That devastation led Adalyn’s parents to raise more awareness around CHD. And, it encouraged her mom to undergo testing early on in her pregnancies with her next two daughters.

After having Oaklyn in 2018, West never expected what she’d hear as she prepared for Maelyn’ birth in 2020.

“The doctor who was doing the ultrasound said she has a heart defect,” West said. “And I mean, I just remember screaming -- I, it’s, I never thought it could happen to me twice and, but I was ready to fight that battle.”

They lost Maelyn to CHD the day she was born.

“So, I can either waste this life that my children weren’t given or I can stand up and fight for them. So that’s why we do this walk and we raise money,” West explained.

On Sept. 18, West and countless other families across the state are walking to remember children taken too soon and ones still with us whose lives will forever be filled with doctor appointments.

“Right now, we unfortunately had to hear the words we’ve run out of options; and that’s not okay to me that myself and other parents are hearing that,” West said.

The walk is Sept. 18, starting at 9 A.M. in Rochester, Michigan. Organizers say families are welcome! Several COVID protocols will be in place to keep everyone safe.

“You don’t know if it’s going to be your best friend that gets the diagnosis, your cousin that gets the diagnosis,” Stephanie Mayack added.

She’s chairing this year’s Congenital Heart Walk. Her heart warrior, Aria, is now 6-years-old.

“We know down the road she’s going to need more surgeries; and you know we hope one day, it doesn’t have to be open heart, it can be less invasive. So research is so important to our family.”

If you’d like to participate in the Congenital Heart Walk, click here to sign up.

If you’d rather walk on your own, there’s information on the website about how to join the effort that way, too.

The CDC is encouraging newborn screening for Critical Congenital Heart Defects. There are some CHDs that can be diagnosed during pregnancy using a special type of ultrasound.

Babies born with a critical CHD appear healthy at first, and may be sent home before their heart defect is detected. These babies are at risk of having serious complications within the first few days of life.

Newborn screening is a tool that can identify the defect in some of these babies. This test estimates the amount of oxygen in a baby’s blood. Low levels of oxygen in the blood can be a sign of a critical CHD.

Screening is done when a baby is at least 24 hours of age, or as late as possible if the baby is to be discharged from the hospital.

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