Children's Mercy Hospital hosts conference to help children born with heart defects

KANSAS CITY, Mo. — More than 200 doctors, nurses, and therapists from around the world are in Kansas City this week to find better ways to help children born with heart defects.

Dr. Keith Coffman said congenital heart defects can lead to neurological or developmental problems because children don’t get enough blood to their brains as they form, since weak hearts struggle to properly pump blood. That can result in strokes, seizures, and even problems reading or walking. 

Coffman is part of  the Children's Mercy Hospital Cardiac Neurodevelopmental Team. It’s a “dream team” made up of cardiologists, neurologists, physical therapists, and psychologists who all collaborate on each patient.

This week, Children’s Mercy hosted the 7th Annual Scientific Sessions of the Cardiac Neurodevelopmental Outcome Collaborative. Health professionals from all over the United States and six other countries are attending the conference to compare, contrast and find the best way to treat children and young adults with heart defects. 

“To be able to really collaborate on the things we can change in how we're taking care of these children. What are those little nuances and the big things that we can do to minimize the developmental concerns that occur in this population?” Jami Gross-Toalson, a psychologist for CMH’s Cardiac Neurodevelopmental Program said. 

One of the success stories from Children's Mercy’s program is Elsie. The 3-year-old was born with a heart defect, and doctors later learned she had a silent stroke as an infant because of the defect. It took away some of the motor function of her left arm. 

“It was a trauma to the child and trauma to the parents. I'm not sure who more — probably the parents,” her mother Molly Matthys said. 

“I think the heart defect was scarier, honestly, because it required two open-heart surgeries, and that feels scarier, but the stroke has been harder,” Elsie’s father, Brian Matthys said. 

Her parents now work with the Children's Mercy team that has created a plan to help Elsie gain strength in her left arm and intervene to prevent any future problems. Brian said having the team work together gives them confidence in their child’s care.

“We know we're plugged in routinely and we know the coordination they provide with all the departments is helpful. The neurologist knows what the neuro-development people are doing, what cardio is doing, what occupational therapy is doing. It's all linked. The left hand knows what the right hand is doing,” Brian said.

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