Small but mighty: Heart warrior continues along journey
Mary Beth Sallee
Reporter, Hart County News-Herald
Lydia Shirley is a vibrant six-year-old. She enjoys school, art, music, and swinging on her playset. She even has big plans for a garden this upcoming spring and summer.
The only difference between Lydia and most other children is that Lydia was born with half a heart.
It’s a form of a congenital heart defect (CHD) that was diagnosed while her mother, Amanda Shirley, was pregnant.
“Lydia was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) before she was born,” Amanda said. “The left ventricle of her heart is essentially nonexistent, and this is why the condition is sometimes referred to as having half a heart. She was also born with a small aorta and mitral valve.”
In October of last year, Lydia underwent Fontan surgery at Cincinnati Children’s Hospital. She has also undergone the Norwood and the Glenn surgeries, as well as a shunt replacement. These are all open-heart surgeries.
“After her open-heart surgery in October, her oxygen saturations are better than they’ve ever been, and she has more energy, too. We’ve been going to Cincinnati for frequent follow-up visits after her last surgery to make sure she’s recovering as she should. We’re hopeful to have those spread out to every six months eventually.”
Amanda explained that Lydia is currently doing well, but the journey hasn’t always been the easiest.
“We’ve spent months in the hospital since Lydia was born,” Amanda said. “We’ve made countless trips to Louisville and then Cincinnati when we switched hospitals…Hospital stays are just plain hard. Many mornings started with being woken up to have blood drawn. Nobody wants to start their day that way, especially a five-year-old. Then there’s the X-ray tech, nurse practitioner, cardiologist, someone from the surgical team, all before morning rounds.”
“This last stay in the hospital was hard because Lydia was so much older,” Amanda continued. “She had to walk the hallways with chest tubes still placed. She wanted to come home and be left alone, but instead, she was stuck at the hospital…I will say this. Lydia is a trooper. She is the bravest person I know.”
CHD is the most common birth defect. Almost 1 in 100 kids are born with a CHD.
“Not all are as serious as Lydia’s specific condition, but it’s a lot more common than most people realize,” Amanda said. “…Even though Lydia looks like a normal little girl, her condition is very serious. Lydia is improving since her last surgery, but we also go to the cardiologist so often because that could easily change. She will require lifelong care and monitoring to see how her heart is functioning and if she needs more procedures.”
Lydia has also attended many therapy appointments, including speech therapy, occupational therapy, and physical therapy.
“Many milestones that come naturally to most kids have required a lot of work and therapy for Lydia to meet,” Amanda said.
Amanda explained that she and her family have been lucky to have amazing nurses, child life workers, and healthcare professionals along the way. They’ve also been blessed to have the best people in their lives to help take care of Lydia.
“It takes a village to raise a child with a complex medical condition,” Amanda said. “My Mom watched Lydia when she was well enough and I needed to go back to work. She also helped us so much when Lydia started kindergarten, but she had to be in the Home Hospital program before and after her surgery for a while. I don’t know what we’d do without her.”
“Ferol Hawkins did a wonderful job working with Lydia while she wasn’t able to go to school in person,” Amanda added. “Once Lydia started school at LeGrande, we appreciated the team of people there who work together so well to make sure not only her needs are met, but that she thrives. Adam and I have wonderful coworkers who have supported us when we’ve needed to miss for Lydia’s surgery and appointments. Our family, friends, and church family are a big part of how we’ve been able to raise a precious girl like Lydia.”
In Lydia’s journey as a heart warrior, Amanda said she and her husband count their blessings and take each moment day by day.
“Things that once seemed important really aren’t anymore. We are always reminded of just how short life can be, and it really puts everything else into perspective,” Amanda said. “We’ve learned to take things one day at a time and to know how blessed we are to have Lydia. We have an amazing support team, but most of all we have God. I can’t imagine this journey without Him and the prayers from those who love us and Lydia.”