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

GENESEA COUNTY, Michigan (WJRT) – Every year, 1 in 100 children are diagnosed with a congenital heart defect.

Families experiencing this reality are asking for your help in supporting research into the most common birth defect. The Congenital Heart Walk will take place on September 18 at Rochester Municipal Park.

A mid-Michigan mom who competes again this year walks for her two daughters lost to coronary heart disease.

“The reality is no one thinks they’re going to be a loving family, nobody,” said Heather West.

Her eldest daughter Adalyn was diagnosed with a congenital heart defect on the day of her birth in September 2016.

“When they said she had coronary artery disease, I had to google it,” West explained. “I had no idea what it was and it still is, it’s still like the worst service to me, like expectant moms don’t know it’s the number one birth defect.”

It can be diagnosed before birth, but the first time mom and dad ever thought about it.

“She fought like the bravest battle I have ever seen a child fight and passed away eight months later,” West said.

This devastation led Adalyn’s parents to raise awareness about coronary heart disease. And that encouraged her mom to get tested early in her pregnancy with her next two daughters.

After having Oaklyn in 2018, West didn’t expect she would hear as she prepared for Maelyn’s birth in 2020.

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

They lost Maelyn to coronary heart disease the day she was born.

“So I can either waste this life that my children did not receive or stand up and fight for them. That’s why we are doing this walk and we are fundraising, ”West explained.

On September 18, West and countless other families across the state march to remember the children taken too early and those still with us whose lives will be forever filled with doctor’s appointments.

“At this moment we unfortunately had to hear the words that we have no more options; and it’s not good for me that myself and other parents are hearing that, ”West said.

The march is Sept. 18, starting at 9 a.m. in Rochester, Michigan. Organizers say families are welcome! Several COVID protocols will be put in place to ensure everyone’s safety.

“You don’t know if it will be your best friend who gets the diagnosis, your cousin who gets the diagnosis,” added Stephanie Mayack.

This year she is chairing the Congenital Heart Walk. His heart warrior, Aria, is now 6 years old.

“We know that in the future she will need more surgeries; and you know we hope someday it doesn’t have to be open-hearted, it can be less intrusive. So research is so important to our family.

If you would like to participate in the Congenital Heart Walk, click on here register.

If you prefer to walk alone, the website also has information on how to participate in the effort this way.

The CDC encourages newborn screening for critical congenital heart defects. Some coronary heart disease can be diagnosed during pregnancy using a special type of ultrasound.

Babies born with critical coronary artery disease appear healthy at first and can be sent home before their heart defect is detected. These babies are at risk of serious complications in the first few days of life.

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

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

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