Mom’s research finds better options to repair son’s heart

Grateful Heart

Pregnant with her first baby, and knowing her baby had a severe heart defect, a local mom was looking for answers.  

She took the advice of another mom and ended up finding a solution that might save her child from numerous extra surgeries. 

That fellow mom told Cortney Schauf before sweet Lucas was born that she would be her son’s best advocate.  

Cortney says she took that to heart and it’s made all the difference on their 6-month journey dealing with their son’s heart defects.

“He came out screaming, and I got a couple minutes with him so that was a really nice surprise,” smiles Cortney.

Her son Lucas was born in February at Children’s Mercy in Kansas City on his own at 38 weeks.  

Knowing ahead of time he had several heart defects, mom and dad were prepped for what would happen afterward.

“There were like ten doctors waiting behind a glass sliding door to grab him as soon as he arrived so they prepped me that I wouldn’t be able to see him.  It was nice knowing what was going to happen,” Cortney remembers.

At a week old, Lucas had his first heart cath to place a stent to increase the oxygen flow in his blood.

“It didn’t go exactly as planned. They could not get to one side so they only were able to place one stent so that’s most likely his need for the oxygen,” says Cortney.

Afterward the family was about to head home when Cortney noticed Lucas twitching in a way she knew wasn’t normal.  

It turned out Lucas was having seizures and had also suffered several strokes – most likely caused by a blood clot from his stent.

“It felt like we were almost in the clear and then we started back over again,” Cortney remembers.

Several weeks later Lucas was able to go back home on strong blood thinner medication as well as medicine for his seizures.  

Going forward there wasn’t a plan. 

Cortney said doctors wanted to see how Lucas grew.  

But the new mom wanted a plan so she found one.

“They do have your kids best interest, I believe that – but you are that child’s voice,” she asserts.

Online research showed a lot of kids with Lucas’s condition were treated by a doctor at Stanford University.  

Cortney had Lucas’s health records sent over and she got a call within a week.

“He believed he could do a complete repair, so he could fix all his defects in one surgery versus they were telling us probably two to three surgeries this year,” says Cortney.

So next month, this family is headed to Stanford for several weeks to get Lucas the help he needs.  

Cortney also credits the American Heart Association with helping to provide funding for the research that leads to new developments in treatment.

“For kids like him who have to have conduits replaced, there’s studies being done of doing it through a catheter so that is huge!  So in 10 years when he needs it replaced, who knows how far it will come?”

Cortney’s talking about the conduit doctors will put in Lucas’s heart.

It won’t grow with him so in another decade Lucas will likely need another surgery to put a bigger conduit in.  

We’ll try to keep in touch with the family and get you and update after Lucas has his surgery next month.  

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