Family shows heart in tackling Williams Syndrome

TOPEKA, Kan. (WIBW) - Brittony Lewis and Aaron Jackson call their 14-month-old daughter Justice a gift.

"Justice is real happy, bubbly I would say," Aaron said. "She wakes up every morning with a smile on. She's a joy to have."

Justice was born early, weighing just four pounds but otherwise seemingly healthy, so the couple didn't think twice about the bluish tone to their baby's skin.

"Aaron and I took her home three days later and we were like, 'We're first time parents!' We didn't really think that anything was different until they told us about the heart murmur," Brittony said.

Their doctor in Emporia, where they lived at the time, immediately called the Cotton O'Neil Heart Center in Topeka. The next day, pediatric cardiologist Dhiraj Singh walked into their lives.

"In a situation like this, delays could be critical," Dr. Singh said.

Dr. Singh diagnosed Justice with Williams Syndrome. The genetic condition is marked by developmental delays, learning challenges and cardiovascular disease, including something called supravalvular arortic stenosis.

"This is the great vessel that takes off from the heart and distributes blood to the body, the main first vessel that takes off," Dr. Singh explained. "That vessel, right at its takeoff off of the valve, has significant narrowing and that is a significant heart disease and it progresses. Long term, (it can lead to) injury to the heart, cardiovascular system. Also, it can result in injury to other organs from lack of blood supply and, unfortunately, it can result in death."

Justice underwent her first heart surgery to fix it at just three months old, and a second surgery not long after.

"It was scary when you walk in, your baby has all kinds of lines coming out of her," Aaron said. "I would do anything for my little girl and it hurt me."

Helping ensure her recovery stays on track is Cotton O'Neil's growing community cardiology approach for pediatrics. Several days a month, Dr. Singh travels to primary care clinics in Emporia and Manhattan - where the family lives now - providing follow up care, closer to home.

"Not everybody has the opportunity, the transportation, the means, to get to the place. Sometimes, they put it to the back burner. They may say we want to watch the child maybe one or two more days and sometimes these babies just don't have that type of time," Dr. Singh said.

It's especially a blessing for Brittony and Aaron, since Justice sees five different specialists.

"Between money, time, it does take a toll on your family," Brittony said.

They may not know what the future holds, but, for now, the couple is thankful for a medical team that's giving their daughter a chance.

"She's happy. She's healthy. She's alive and hopefully we just keep seeing progress from here," Aaron said.

"My hope for the future is that she just has a normal life like everyone and that her disability doesn't define her," Brittony said. "I don't want it to hold her back at all in her life."

Williams Syndrome affects just one in 10,000 people world-wide. It's not known what causes it. Most cases have no family history.