Despite Disease, Child’s Heart Ticks On

Health experts say Congenital Heart Disease is considered one of the most common birth defects.

The "imagine" sculpture near 84th and Dodge, in front of Children’s Hospital and Medical Center, is meant to emulate the ideal setting for children’s health care. The idea behind the 2010 creation, according to the sculptor, was to represent the nurturing, caring and healing of the many children that will receive care at the hospital each year.

For five-year-old Brady Luke and his family, that ideal could not have hit any closer to home. A lot has changed over the past five years for the Luke family. But by the looks of things, and by the way dad, Brian, let Brady explore around the hospital, it would be impossible to tell something had been amiss.

"He's undergone three open heart surgeries over the past five years. To do, as we call it in our family, re-plumb his circulatory system and to allow him to live,” Brian Luke said.

Two weeks before Brady was born, his mom and dad found out the left side of his heart would be severely underdeveloped. Naturally, they had questions.

"Is he going to live? Is he going to die? How long will he be in the hospital? What are the financial implications of the entire process? It was a whirlwind to say the least, very devastating," Brian said.

Brian admitted he and his wife were not ready to properly deal with the challenges that were in store for the family. "We were not, just like every other parent that finds out their child is going to be born with a congenital heart disease, there are a million things that go through your mind,” Brian said.

After learning Brady’s heart would be severely underdeveloped after birth, the family faced three options. They elected for Brady to undergo three surgeries. Eventually, the results would start manifesting themselves.

During the interview, Brady stepped down the cascading staircase inside the hospital lobby with ease, before the latest surgery in June; it would not have been so easy. "He'd get about four stairs and get winded,” dad added.

Not so much anymore.

"He runs with the other kids, wrestles with his brothers, he's a typical kid now," said Brian.

Now, Brian wants other parents with children born with CHD to know there are others out there, ready to help.

"Become your child's advocate, you are your primary advocate for your child, learn everything you can, speak up when you need to and find all the information because they are the most important thing,” Brian said.

The mission now turns to helping others find support and network with other parents dealing with the same life changing events.

Thursday night at Children’s Hospital and Medical Center, Luke’s group, “Midwest Heart Connection” is hosting a local support group and a kick off to National Congenital Heart Disease Awareness Week at 6 p.m. featuring national speakers.

Lawmakers in Lincoln have seen a proposed piece of new legislation in the Unicam. The bill aims to help parents detect Congenital Heart Disease sooner. LB 225 would make it mandatory for all newborns, birthed in Nebraska hospitals, be screened for Congenital Heart Disease immediately with the end goal of helping prevent infant mortality.

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