Alice Simmons, from Emporia, gave birth to a beautiful baby boy, born looking perfectly healthy.

But within 20 weeks of pregnancy, Alice learned her baby, Carter Gene, had a heart defect. 

We thought everything was fine. There’s our little boy. Then we went in for an anatomy scan and that’s when they told us, hey, you need to go get further testing done,” said Simmons.  

There are a number of types of congenital heart defects. Alice’s baby boy was born with Hypoplastic Left Heart Syndrome. 

“I had him, and he had his first heart surgery at 7 weeks old. It’s called the Norwood, and he made it through that one ok. The next day he coded. His surgeon said he wasn’t strong enough to make it through and there wasn’t anything they could do for him. So my husband and I had to make that decision to withdraw care. He was 5 months old when he passed away in January,” explains Simmons. 

It’s been a little over a year since she lost Carter, and she’s still asking the questions why and how? 

Jennifer LeClair with the American Heart Association of Kansas said the tricky thing with congenital heart defects, is there is no real pinpointed cause.

“That’s one of the things that is kind of a mystery. They can happen with seemingly no foreshadowing of it.” 

Health experts say causes can stem from genetics and drug use by the mom. Ultimately, something caused the baby’s heart not to develop properly. And that’s why prenatal care and proper screenings are vital.

 If there are any red flags raised at any of your prenatal visits, ask a million questions. It’s always better to be over-informed than under-informed. Then heaven forbid if something does show up and you realize you’re going to be dealing with it, it’s not the end of the world. You’ll have time to prepare and seek out the best treatment for your children,” said LeClair. 

Thirty percent of deaths for infants, are from heart defects.  The state of Kansas hopes to reduce this number by recognizing the need for screenings. 

 “February of this year, the Kansas Department of Health mandated that congenital heart screenings be a part of the newborn screening panel. So all infants in Kansas, no matter what hospital they are born at, will now be screened before they go home. So parents need to make sure that this is occurring and they need to pass before they can go home. Just be aware that the nursing staff is doing this test, it’s no invasive. We just put an oxygen saturation on their arm and foot,” said Heather Aylward, the Director of the Women’s Life Center at Newman Regional Health.  

Not a day goes by that Alice doesn’t think of Carter. 

“He was our little superman. That was his theme. He was pretty cute. He fought so hard,” said Simmons.

She hopes to use her tragedy to spread awareness.  Simmons will be presenting at Newman Regional Health’s “Becoming a Mom” Class. 

Here’s the class schedule for this year: