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Connecting with Other Families Reminds CHD Mom She’s Not Alone

Like many moms whose kids have Congenital Heart Defects, Leslie was not expecting anything outside the norm when she gave birth to her firstborn daughter in 2015. But when Sarah Jane made her entrance six weeks early with several birth defects, including three CHDs, Leslie’s world was turned upside down.

At 3 weeks old, Sarah Jane had open heart surgery to correct VSD, ASD, Coarctation of the aorta and bicuspid aortic valve. She spent most of the next three months in the hospital at Children’s Health Care of Atlanta at Egleston. Leslie and her husband, who are from Columbus, spent their days and nights by their daughter’s side or at the Atlanta Ronald McDonald House.

It was a very difficult time,” Leslie said. “I was a brand-new mommy to this baby girl, and I was really just going through the motions, trying to figure everything out. I didn’t know it at the time, but I was struggling myself. The nurses and doctors at Sibley were so good to us, keeping us informed and being patient and sweet with us.”

One nurse in particular stands out to Leslie because of the extra time she took to keep the family informed through every step of the process. Knowing what to expect comforted Leslie. Sodid connecting with other families going through similar experiences.

A friend whose child had heart problems connected me with the Kids at Heart Facebook page,” Leslie said. “It helps tremendously to talk to people who have been through something similar. It makes it easier knowing you aren’t alone.”

Leslie says she was scared at first to bring Sarah Jane home with a feeding tube and the concern that something might go wrong with her heart. But she said the education that the Sibley nursing staff provided gave her confidence, and now her daughter is thriving, attending pre-K and on pace academically with her peers.

“She was so tiny,” Leslie said. “It really teaches you to cherish the moments. Every moment counts. They may be fine now, but in a month they might not be. We’re lucky because so many people have to fly to Atlanta to have access to the specialists, doctors and nurses we can drive to. I don’t know what we’d do without them.”

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.



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