A Designer Heartbeat: How Congenital Heart Defects impacted a local family

ROBINSON, Ill. (WTHI) - After the healthy birth of their first child, the Hilderbrand’s of Robinson, Illinois, didn’t expect anything different when they decided to have another.

The birth of Sean went just as smoothly, but just a few hours later, he began losing weight.

“It wasn’t, until I guess the next morning, that the doctor on-call came in and said his umbilical cord wasn’t complete. It’s supposed to have three vessels and it was only two. So that was kind of a warning sign for them to check some things out,” said Monica Hilderbrand, Sean’s mother.

After several tests, doctors found a heart murmur was the cause of Sean’s health problems.

“He listened to him and said immediately, Yes, He’s got a heart problem. I’m so sorry, he’s going to have to have surgery,” said Monica.

Just a few days old, Sean was diagnosed with a defect called Tratalogy of Fallot.

Sean had a hole in his heart and blockage going towards the pulmonary artery.

The solution, Sean would need open heart surgery.

“Up until that point in time, if you didn’t listen to his heart, you’d never know anything was wrong.

He looked fine,” said Brad Hilderbrand, Sean’s father.

However, when the Hilderbrand’s listened to their son’s heart, they knew the problem was real.

“Instead of hearing the ‘thump, thump,’ I would hear ‘swoosh, swoosh, swoosh,’ which is not at all what’s supposed to be there,” said Monica.

At 3 ½ months, Sean went to the Saint Louis Children’s Hospital in Missouri for open heart surgery.

“We were relieved that everything was okay, but then there was the reality of 'well, I wonder what life is going to be like now after surgery,” said Monica.

Life is now great for the Hilderbrands. Sean sailed through recovery and now, at 2-years old, is an energetic little boy.

“As he grows, he may outgrow that heart valve repair so when he’s around 10, 11, 12-years old, there is a chance he may need to have a valve replacement,” said Monica.

But until that day comes, the Hilderbrands said they’re just thankful for the countless doctors who saved their son’s life.

“What I hear is a normal heartbeat. The doctors do say there’s your 'designer heartbeat ' because they can hear differences, but I can’t hear anything different now,” said Monica.

And for a mother, who’s child has CHD, is the most beautiful sound in the world.

Now before Sean, the Hilderbrands said they knew very little about CHD.

They said, if they’d known more, they may have requested the Pulse Ox Screening to test for a defect.

As of now, Indiana is one of only two states that mandates this screening for newborns.

So if you live in Illinois, you’ll have to ask for it to be done.

However, we talked with the Illinois Department of Public Health, who said they’re looking into making this test mandatory as well.

The Hilderbrands said they’re now taking extra precautions during the pregnancy of their third child, who’s due in the spring.

For more information about Congenital Heart Disease and the Pulse Ox Screening, click here.

To learn more about the stories of other families, who have dealt with CHD, click here.