Quincy family pushes for Illinois newborn screening

Carrie, Aubrey and Brian Trowbridge

A new law now requires Illinois hospitals to screen for Critical Congenital Heart Disease or CCHD.

Governor Pat Quinn signed the Congenital Heart Defect Screening Act into law this past August.

A Quincy family played a key role in making that happen.

Six-year-old Aubrey Trowbridge looks like a perfectly healthy young girl. But as her parents can attest, that was far from the case during her first days of life. Aubrey has hypoplastic left heart syndrome, which is considered a critical congenital heart defect.

"You always hope for 10 fingers and 10 toes, but for something like that, it was a complete shock to Brian and I and my family," Carrie Trowbridge said. "When she was born, she was whisked away from us and taken to St. Louis Children's Hospital. She had her first open heart surgery when she was 6-days-old."

Aubrey had another surgery when she was 6-months-old and another heart surgery when she was 3-years-old. She's doing great now.

The Trowbridge's consider themselves lucky, but they used their experience to help other Illinois families.

Carrie Trowbridge shared her story at the Illinois State Capitol alongside the March of Dimes to lobby for CCHD's addition to the state's required newborn screenings.

"They were really key in helping us push this," March of Dimes Director of Advocacy and Government Affairs Shelly Musser said. "They met with several legislators, they spoke at our lobby day. They met with members of the General Assembly. They allowed us to use their story. They added a face to CCHD."

"This is a law that's passing across the United States to help identify these birth defects for children before they're sent home," Father Brian Trowbridge said. "So for us, we're a part of something that we felt is going to help save a lot of lives."

Carrie and Brian Trowbridge say they take it year-by-year with Aubrey. She goes back to cardiologists for diagnostic tests.

"Basically, there are a ton of long-term things that could happen -- heart transplants," Carrie Trowbridge said. "We don't like to stress about it. We like to celebrate her life now. We're blessed to have her."

The test for CCHD is called pulse oximetry screening, or pulse ox.

Sensors are placed on a baby's hand or foot to check oxygen levels in the child's blood along with the heart rate.

If their levels are too low, additional tests may be conducted to check for critical heart defects that might go undetected.