Mending little hearts: Frisco family raises awareness for cardiac defect in children

Colby Elliott, a 9-year-old fourth grader at Frisco's Isbell Elementary School, may have a fighter's heart, but he still needs a new one.

That's because Colby has hypoplastic left heart syndrome, which essentially means he has half a heart because the left side is so underdeveloped.

When Sheila Elliott was 16 weeks pregnant with Colby, she and her husband, Jason, were informed of Colby's condition and given three options: a heart transplant, a series of three open-heart surgeries or to do nothing. If the couple had chosen the last option, it would have meant Colby would die within a week of being born.

Instead, the couple elected for Colby to have three mandatory open-heart surgeries that had to take place before his fifth birthday.

"We never knew anything like this existed until it affected us," Sheila Elliott said. "Yet congenital heart defects impact one in 88 people, although Colby's is one of the most severe [kinds of congenital heart defects]. We go to the cardiologist every year, sometimes more frequently if something comes up -- like a few months ago when he had an episode in PE."

In addition to the three mandatory procedures, Colby's also had two additional open-heart surgeries because of complications, although he doesn't remember any of the surgeries as they all occurred when he was younger than 3.

After one of his open heart surgeries, Sheila was so impressed with the job the paramedics did with her son that she changed her own career path to become one herself.

"I was a school teacher -- I actually taught school here in Frisco," Elliott said. "After his fourth open-heart surgery he was flown by CareFlite to Houston. It was that crew that got me interested in medicine, so I got my paramedic certification. Now I work at Methodist Dallas Medical Center, and I'm also working at Southwest Transplant Alliance. Being a part of organ recoveries every day for a living really hits home. It makes me realize how special he is, too."

Eventually, Colby will need a heart transplant, his mother said. Because he's not currently on a waiting list, however, there's only two ways he can get a new heart: through heart failure or instant cardiac arrest.

"If he goes [into instant cardiac arrest], it's a lot more difficult, because the chances of him being stable are very slim," his mother explained. "We kind of hope he goes into heart failure slowly, because if you go quickly it's a matter of -- what I envision -- of having to do CPR until the ambulance can get here."

Despite his condition, however, Colby's relatively normal for a child his age. He loves drawing -- particularly characters from the Mario video games -- and takes part in most activities at school, although running isn't something he's good at.

"That's why I got an electric scooter for Christmas," Colby said.

Colby's condition has also led to a lot of unexpected support from both people in Frisco and people he's never met before.

Firefighters and EMS crews for the city's fire department have gotten to know Colby and understand his illness, his mother said. The school district has also been helpful, she said, noting that teachers and the Isbell Elementary nurse have all been in contact with her. The district has also been proactive in its medical capabilities, teaching sixth graders about CPR.

Neighbors, too, have provided support, as have users of Frisco Online, as Sheila Elliott has posted on the website's message board regularly for years. Relative strangers who had never even met the Elliotts in person began praying for Colby, and some even brought meals for the family and came to the hospital, Sheila Elliott said.

"To this day I can post on Frisco Online about anything that's heart-related and you get an outpouring of support," she said. "I can attest to the [recent Forbes ranking] that Frisco's one of the friendliest cities in the nation."

The family is also part of a support group called Mended Little Hearts of Dallas where they've met other families with children who have conditions similar to Colby's.

That's where the Elliotts met Maribeth Gillis, a 27-year-old who also has HLHS. Gillis was the 16th patient and 11th survivor of the Norwood procedure, the first surgery required for HLHS babies.

Gillis said her life is similar to anyone's without a heart defect, she just has to be more careful in extreme heat and can't undergo rigorous physical activity.

"It's neat to see and talk to these children and their families," she said. "It's neat to see how far the Norwood operation has come and how well these kids are doing post-surgery as well as the activities they're able to do and the lives they can live."

Gillis has known the Elliotts for about seven years and gives them and other families advice on how to deal with HLHS and other heart defects.

One of the most important things Gillis tells families, she said, is simply to support their children by letting them do the same things other children do.

"My biggest advice -- I'm not a parent -- is just to never give up on your child and to treat them as you would a child without a heart condition," she said. "As they grow older, let them learn their limits on their own. You have to be their advocate in their early childhood years, but as hard as it is when they get older, you've got to let them go their own route."

At its Feb. 5 meeting, the Frisco City Council will honor Colby and other heart disease survivors and victims with a proclamation declaring February Congenital Heart Defect Month.

That's just one of many actions the Elliotts and other families with children who have congenital heart defects are doing to bring awareness to the issue of children born with heart problems. They're also pushing for the state legislature to pass a bill that will make oxygen readings through a pulse oximetry device mandatory for newborns before they're released from the hospital.

Currently, most hospitals in the state provide pulse oximetry screenings, although it's not mandatory. Such screenings can identify heart defects before a baby ever has his or her first checkup.

Additionally, Colby's also been involved in an American Heart Association video that's been seen at more than 40,000 schools, and he still gets calls from well-wishers. Recently he video chatted with a school in Pennsylvania that wanted to talk to him, his mother said.

"I don't think Colby understands the impact he's made on other kids and how it's encouraged people to raise money for the American Heart Association," she said. "And I don't think I've grasped the impact he's had on other people, either."

Helping out

For more information about congenital heart defects, visit www.mendedlittlehearts.org. Information on joining the organization or being a part of the City Council's Feb. 5 proclamation can be obtained by emailing Sheila Elliott at sheila@elliott5.com.

Additionally, the Chick-fil-A located at 8724 Preston Road in Plano will be holding a fundraiser Feb. 21 for congenital heart disease in which a portion of proceeds will go to Mended Little Hearts when customers write the organization's name on their receipts.

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