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Fighting for a brave heart

How a strong support system got a family through its toughest moments

heart care

Dynamic and vivacious, 11-year-old twin sisters Lauren and Madison are every bit as charming as they are spirited.

However, while the girls are matched in character, they differ in physical development. Older by 30 minutes, Lauren is noticeably taller than Madison, who was born with a congenital heart defect.

Halfway through her pregnancy, their mother, Kimberly Jones, discovered she was carrying not one — but two girls.

“It was a huge surprise to me, and it was a little scary,” she said. “Just thinking about everything — times two. It was going to be a big change for us.”

Kimberly’s pregnancy continued without a hitch. She carried the girls full term without a hint of the impending diagnosis.

Like many babies with congenital heart disease, Madison’s defect wasn’t discovered until after birth when a pediatrician found a heart murmur during a routine post-delivery checkup.

A cardiologist from University of Louisville Physicians – Pediatric Cardiology was consulted for a more thorough evaluation, which revealed two large holes in Madison’s heart. Madison was diagnosed with atrial and ventricular septal defects (ASD and VSD), which occurs in about one in 500 babies.

Despite the troubling news, both girls were allowed to join their big sisters at home. Holes in the heart sometimes close over time, so Madison was closely monitored.

Unfortunately, six months later, Madison went into congestive heart failure, which occurs when the heart can no longer pump blood efficiently.

While Madison was scheduled for surgery to repair her strawberry-sized heart, her parents prepared for one of the toughest battles they had ever faced. Fortunately, they were not alone in their fight for their child’s life.

Norton Children’s Hospital is home to Norton Children’s Heart Center — the state’s only pediatric cardiovascular program. In addition to treating thousands of patients annually, Norton Children’s facilitates a support group called Brave Hearts for families who have children with congenital heart defects or heart-related medical issues. Through Brave Hearts, the Jones family gained an unexpected strong support system of local families.

“I first met Sara,” Kimberly said. “She told me what to expect. She was great in helping me get ready: Knowing what’s going to happen during surgery, how long we’re going to be waiting, what’s going to happen afterward and what to expect.”

But there were some moments for which the support group couldn’t prepare the Jones family.

Madison stayed in the hospital a total of five days for surgery and recovery, two of which were spent in the “Just for Kids” Critical Care unit (PICU). She was placed on a mechanical ventilator, which involves tubes being placed into the airway to breathe for a patient when difficulties arise.

“Coming off the ventilator was the scariest moment for sure,” Kimberly said, holding back tears. “To see a child go through that — pulling her ventilator out — it is a very scary thing.”

In those tough moments, the Joneses met another unexpected support team through Norton Children’s Hospital.

“The nurses in the PICU are phenomenal,” Kimberly said. “It’s amazing the level of detail they go to. They take care of the kids, but they also take care of the families as well. Rebecca and Tracy were [Madison’s] two nurses that took care of us through the whole procedure.”

Madison was allowed to return home after her open heart surgery on nothing more than ibuprofen and an antibiotic.

Though some of her growth was slowed by the ASD and VSD, Madison is a normal, thriving tween whose banter equally matches her sister’s.

“She thinks she’s all that,” Lauren said through a smile.

“I am,” Madison quipped back without missing a beat.

It has been more than a decade since Madison’s surgery, but the Joneses are still active participants in the Brave Hearts group.

“We support each other in everything. Our kids have grown up together. It’s amazing the things we’ve done over the years with our Brave Hearts friends,” Kimberly said, prompting Madison to share about a special Brave Hearts friend:

“One of my best friends, Alyssa — if I was scared to do something, she always said ‘It’s OK! You can do it!’ She’s always been a really good friend to me.”

The Joneses now act as mentors for new families.

“We pass what we have learned on to them, so they can have the same experience that we did,” Kimberly said. “You don’t have that support system when you have to go across the country, or even to the next state. Your family is here.”

To learn more about the Jones family and their journey, and to hear about our other families, visit NortonChildrens.com.

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