Sisters' story aids heart education

EAST COUNTY — Lakewood Ranch High School’s Natalie Colwell looks just like any other high school student.

But looks can be deceiving.

Underneath her good-natured personality, quick smile and resilient spirit, her heart is hard at work, forging a battle against itself. Natalie, who turns 15 years old in October, was born with heart defects that have lifelong implications. Because her condition was not diagnosed early, her lungs and adrenal system were also damaged, because her heart pumped blood outside the normal pathways and flooded her lungs with extra blood.

The medications she takes each day are saving her life, keeping her heart, lungs and adrenal system functioning as normally as possible.

“It used to be a big deal,” said Natalie, who tried hard in middle school to hide her condition. “I didn’t think it was fair. But, then, I realized it’s there. I have to live life to the fullest. I have it pretty bad but it could always be worse.

“Living life as a normal teenager — that’s all I want,” Natalie said.

Natalie and her sister, Caitlin, who was born with the same defects, are poster children for the American Heart Association this year, as it prepares to host its 2012 Sarasota/Manatee Heart Walk fundraiser at 8:30 a.m. Sept. 22, at Payne Park, in Sarasota. The girls’ faces and stories adorn the walls of local Subway restaurants, where patrons can make donations to the American Heart Association.

Although both girls were born with the condition, Caitlin’s heart defects were diagnosed in-utero, allowing her to receive medicine and care that has made her virtually non-symptomatic today, at 11 years old.

“There’s still a huge need for research,” said their mother, Annmarie Colwell. “Caitlin has been hospitalized twice (compared to so many times for Natalie). The difference between them is four years. We’re learning every day. Protocols and procedures are changing every day. I firmly believe that’s the difference between their outcomes. Those things only happen through research and development.”

“Most people don’t think medically-disabled children look like my children,” she said of why the family got involved with promoting this year’s heart walk. “Everyone thinks kids with heart defects look disabled. They don’t know how many hundreds out there have stories like ours. Getting that acceptance, that protection, is a struggle because they don’t look (like they need it).”

Although the Colwells admit handling Natalie and Caitlin’s medical condition is tough, they also say some of their biggest challenges have been at school — helping other students and teachers understand the girls’ physical limitations, medical needs and other requirements. They also have to fight to ensure specialists and physicians are taking a more holistic approach to their daughters’ health.

Annmarie Colwell said the American Heart Association provided her and her husband, Mark, with information they could use to advocate for their children, both with doctors and in the school setting.

“They help you have those tools to push back,” Annmarie Colwell said of the organization. “You have to advocate for the whole child.”

Annmarie Colwell said both her daughters have success stories, thanks to the efforts of the American Heart Association to provide research and education about cardiovascular health.

“There are a lot of kids we’ve prevented from having lifelong (problems) because of (the Heart Association’s efforts),” she said.

Contact Pam Eubanks at [email protected].

Early detection was key second time around

Both Natalie and Caitlin Colwell were born with heart defects, but Natalie’s condition was undiagnosed at birth.

“We took home a perfectly healthy child, so we thought,” their mother, Annmarie Colwell, said. “She was compromised because we didn’t know. She was not given the neonatal care.”

Natalie did not start showing symptoms of her heart defects until she was about 9 months old. The doctors thought she was asthmatic, because she wasn’t making her weight and height milestones. She would turn blue at her eyes and mouth whenever she ate or cry.

Finally, her parents took her to All Children’s Hospital for further testing; doctors discovered a heart murmur and the holes in her heart. Her lungs were getting flooded with too much blood. Doctors thought the holes were closing until Natalie was 8 years old, at which time they realized Natalie was developing micro blood clots, which were causing migraine headaches and other symptoms.

Since then, her parents, Annmarie and Mark, have battled for the health of their oldest daughter, who takes nine medications daily to keep her heart, lungs and adrenal system functioning as best as possible.

When the Colwells decided to have Caitlin, they knew there was a 30% chance their second baby could have the same defects. But, this time, they were prepared. Caitlin was delivered via an emergency C-section to ease stress on the baby’s heart, and she had a full paranatal team at her birth. Medicines were administered to protect her lungs.

“Having everyone in place and having the education and giving her the right medical care has mad a dramatic impact,” Annmarie Colwell said.

INFORMATION
The American Heart Association’s 2010 impact goal is to improve the cardiovascular health of all Americans while reducing deaths from cardiovascular disease and stroke by 20% by the year 2020.
*Information courtesy of heart.org

IF YOU GO
Heart Walk 2012-2013 Sarasota/Manatee
When: 8:30 a.m. Saturday, Sept. 22
Where: Payne Park, 2050 Adams Lane, Sarasota
Details: Registration starts at 7:30 a.m. Stage presentation starts at 8 a.m.
Info: sarasotamanateeheartwalk.org