Kellen’s Story: Mother who lost son commemorates Congenital Heart Disease Week

MEMPHIS, Tenn. — About one in a hundred babies are born with a heart defect in the United States.

This week, thousands of families will observe Congenital Heart Disease (CHD) Week.

FOX13′s Lauren Coleman spoke with a mother who lost her son to the disease, and how she’s using her experience to help families across the Mid-South.

Katrina Dorse couldn’t wait to be a new mother.

“I was expecting my first child,” Dorse said.

“I got extra ultrasounds done during my pregnancy and I just couldn’t believe it had been missed.”

In 2016, at the age of 25, she gave birth to her son Kellen.

“I found myself in a position of being afraid, of being a little angry,” Dorse said.

“That my body or me had accidently did something wrong.”

Kellen was born with Congenital Heart Disease.

Congenital Heart Disease is an abnormality in the heart that develops before a child is born.

Doctors told Dorse her son had seven heart defects.

While waiting on a heart transplant at LeBonhuer Children’s Hospital, Kellen died after just five months of life.

“As a young woman, a new mother, all that I needed was support,” Dorse explained.

“All that I needed was love and community and I had that from my friends and family and neighbors.”

According to the American Heart Association, Congenital Heart Disease is a common birth defect with nearly 40,000 babies affected a year.

Many need surgery within their first year of life.

Dorse created the Big Heart Fund to help provide support to patients and families of the Heart Institute at LeBonhuer’s Children’s Hospital.

“So, we provide things like monthly meals to families while they’re inpatient,” Dorse said.

“We provide financial grants to families because we know the biggest burden families face along this Congenital Heart Disease journey is financial.”

Since the start of the organization in 2016, Dorse has been able to provide support and inspiration to hundreds of Mid-South families.

“The biggest comfort that I found with having Kellen was coming to the realization that I did nothing wrong,” Dorse said.

“It wasn’t my fault. It wasn’t anyone’s fault. It just happened. So, I’m able to be there for other CHD families and help them realize the same thing.”

The Big Heart Fund also provides monthly support groups for families.