Elk River Mother Shares Family's Experience With Congenital Heart Defect

MINNEAPOLIS (WCCO) -- An Elk River mother is sharing her family's traumatic experience and hoping to leave other parents-to-be with one message that could save a life.

The birth of a baby is supposed to be one of the most joyous occasions, but imagine going through delivery and finding out your baby's heart is failing.

Natalie Barker was about to be a mom for the third time, but had no warning of the heartache that would hit her family.

"I have a healthy baby. I have a normal pregnancy. My ultrasounds look great. Everything was perfect," she said.

However, 24 hours after giving birth to Aidden, she knew something was wrong.

"Every time he would lie on his back he would start to gag," she said.

Doctors then took Aidden into a special nursery.

"We had gone in there and he was hooked up to everything," said Barker.

An EKG revealed devastating results.

"The first thing she said to me is 'your baby is very, very sick,'" Barker said. "They gave us basically three options on what we could do. We could take him home and let him pass, we could go to a heart transplant list, or we could do three surgeries within the first four years of life."

"You hear of it happening to other parents and families when it actually happens to you, it's unreal and it's hard to believe it," said Joe Tilly, Aidden's dad.

With no good options, but refusing to give up, Aidden's parents decided to fight for his life.

"His specific heart defect is called Hypoplastic Left Heart Syndrome. So, basically the left side of the heart is not functioning," Barker said. "Through these three surgeries they create the right side of his heart to be his whole heart."

Aidden was rushed to specialists at the University of Minnesota, where at 9 days old, he underwent his first of three open heart surgeries. The other two followed at seven months and another at 3 years old.

Today, those risky surgeries appear to have worked.

On Sunday, Aidden will celebrate his 5th birthday. While he has grown stronger, his mother has too. She's gotten the city of Elk River to declare this week Congenital Heart Defect Week.

Barker, who's also a nurse, believes parents don't know enough about the No. 1 birth defect and don't know the questions to ask.

"When you're pregnant, ask your ultrasound tech, ask your doctor, do you see four chambers, are there valves in the heart, are there holes in the heart, does anything look weird with your baby's heart?" she said.

If a congenital heart defect is detected in utero, doctors can start medication early and parents can delivery at the right hospital -- saving precious time.

"We needed more of a specialized place that could deal with heart defects after birth," Barker said.

Now that Aidden's heart is beating stronger, the family focus turns to others and hoping someday for a cure.

"Diagnosing where the problem stems from so nobody has to go through this," Tilly said.

Doctors say Aidden can live a normal life, but can't play contact sports and his parents must watch for signs of heart failure.

Eventually, however, he will go into heart failure, Barker says, because the right side of his heart can't function on its own forever.

To learn more about Congenital Heart Defect Awareness Week, click here.