Saving Little Hearts

Started by a former Chattanoogan, the pediatric heart information group now has a local chapter

By Clint Cooper Staff Writer

Saving Little Hearts wants to do just that.

The nonprofit organization, begun in Knoxville about a year ago and now with a chapter in Chattanooga, offers support groups, education programs and fund-raisers to help spread facts about congenital heart defects.

"With our oldest, we thought it was the end of the world," said Crystal Newman, the Chattanooga coordinator of Saving Little Hearts. Congenital heart problems are the No. 1 birth defect of children born in the United States, according to the organization. In addition, congenital heart defects are the leading cause of death by birth defects of children under age 1. According to the March of Dimes, one out of every 115 children is born with a congenital heart defect.

"Nobody realizes that," said Karin Coulter, the Chattanooga native who began the group in Knoxville. "Everybody tends to think of Down syndrome (as the leading birth defect), but this is much more common."

Both of Mrs. Newman's daughters were born with heart defects. The older daughter, Rachel, 5, was born with pulmonary stenosis, which caused one of her valves to be stuck closed. The younger daughter, Alex, 18 months, was born without a left ventricle and with a damaged left aorta.

Rachel's problem, considered mild, was corrected with angioplasty, her mother said. Alex's issue was much more severe and required surgery when she was only 3 days old.

"They had to rewire everything," Mrs. Newman said of her younger daughter. "She still has another surgery to go," and the problem is still considered serious.

In the surgery, the four chambers of Alex's heart were reworked into two.

"She was never pink," Mrs. Newman said. "Now, she can't keep up or over exert herself or play like other kids." There are 35 different congenital heart defects, she said.

Mrs. Coulter's son, Ben, was born with a congenital heart defect called

Tetralogy of Fallot. He had complete repair surgery at age 3 months and is doing well.

"When our son was born and we heard 'heart defect,' we were stunned," she said. "We wanted an answer right then. We got on the Internet and found out there was not a whole lot going on. It was a challenge to find out anything. We found a few sites that were helpful but not much. We had nobody to talk to."

Once their son got past his surgery and the subsequent medication, the Coulters decided they wanted to help others going through the same thing.

"It's traumatic to go through it by yourself," she said.

The Coulters' first thought was to push for more research, but they eventually learned there was ongoing research. They then turned to raising money for a camp for pediatric heart patients in Eva, Tenn. Their first fund-raiser brought in $5,000, which they distributed to the camp and to start a scholarship fund for campers.

A support group for families of children with congenital heart defects, which meets on the first Tuesday of every month in Knoxville and now in Chattanooga, also was started.

The Knoxville group has 43 families on its list, said Mrs. Coulter. The

Chattanooga group has 10 to 15 families, Mrs. Newman said.

More recently, Saving Little Hearts began putting together surgery care packages and now delivers 25 to 30 a month to Vanderbilt University Medical Center, where much of the pediatric heart surgery is done. The Chattanooga chapter recently participated in a heart walk fund-raiser and is making plans for a Christmas get together and later a picnic.

"We want to build a community for these kids - to let them know there are others out there like them," she said.

The Knoxville chapter annually plans three fund-raisers, Mrs. Coulter said. The Chattanooga group is working on its first one, Mrs. Newman said. The local group hopes to have its initial fundraiser on Feb. 14, National Congenital Heart Defect Awareness Day.

"Our overall goal is to help heart families, to be a support network," said Mrs. Newman. "We want to spread awareness, not to scare (people) but just to let them know it can happen."

Families don't have to have a child currently going through surgery or other procedures to help, Mrs. Coulter said. "Just because they're not going through a bad time now doesn't mean they won't be able to help somebody who is," she said. For more information, call Mrs. Newman at 326-0924, Mrs. Coulter at (865) 748-4605 or visit www.savinglittlehearts.com.

E-mail Clint Cooper at ccooper@timesfreepress.com

This story was published Thursday, November 06, 2003