Sadie throws her ball down, hard, and it rolls across the carpet. The ball is made of clear plastic, and inside an orange fish spins around and around. “Ball!” exclaims the seventeen-month-old. She grins, then lets her mood escalate into giggles as the ball keeps rolling and the fish keeps spinning.
Sadie is an active toddler, and a happy one. When Kimbery Thies gently pulls Sadie’s shirt to the side to reveal a thin silver scar running down the center of her chest, the little girl smiles patiently.
Sadie’s scar is a tangible reminder of the open-heart surgery that, when she was 11 days old, saved her life.
“I was in absolute shock,” said Thies of learning that her baby had a congenital heart defect.
And this shock is what Thies hopes to help other parents avoid. “The thing that amazed me, was that pregnant women are tested for Down Syndrome, Cystic Fibrosis, there are so many genetic tests,” she said, “but they aren’t tested for CHD (congenital heart defect), they aren’t even told about CHD.”
This is particularly surprising since, according to the U.S. Department of Health and Human Services, congenital heart defects are the most common type of birth defect, affecting eight out of every 1000 newborns.
There are more than 35 identified forms of congenital heart defects that affect the normal flow of blood through the heart, and these can involve the interior walls of the heart, valves inside the heart, or the arteries and veins that carry blood through the body.
Sadie was born with transposition of the greater arteries, a condition that accounts for five percent of CHD cases. In this defect, the two main arteries are connected to the wrong chambers of the heart.
“Basically her pulmonary artery and her aorta were crossed, so instead of blood flowing in a figure eight, it’s going in parallel circuits,” said Thies.
Sadie’s treatment required a transfer to the University of Virginia Medical Center, where she endured numerous procedures and a twenty-eight day stay in the hospital.
Thies believes that better, more thorough testing during her pregnancy, including more detailed ultrasounds and an echocardiogram, could have detected her baby’s condition.
“Nothing could’ve been done in utero,” she said. But after the birth, “we could have been closer to a facility that could provide treatment.”
She adds that “I have taken it as my own personal crusade to get information out there.”
In honor of Congenital Heart Defect Awareness Week, held Feb. 7 – 14, Thies has created The CHD Blog. She plans to update the blog every day this month.
On the site, she has written, “My hope is that the patients, parents, researchers, cardiologists, pediatricians and all others who support CHD awareness can find each other and build bridges. This blog is one of many hundreds of sites out there… let’s all find one unified campaign and get together. There are lives that depend on it.”
For more information:
Mended Little Hearts is a Richmond-based support group for families who face CHD. Visit mendedlittlehearts.org or call 1-888-HEART99.
The CHD Blog is located at http://www.learnaboutchd.blogspot.com
