Jamie and Destin wanted their children to grow up close to one another. "That's the hope and the dream, that we get to have a family life," Jamie says.
That dream is now coming true for the young family. After Sanders, the couple's youngest daughter, was born with a rare, but serious heart condition, a hospital and a community came together to support her throughout her journey to receive a new heart.
An anxious beginning
When their oldest daughter Bryce was about 14 months old, Jamie and Destin were thrilled to discover that Jamie was once again pregnant. Unfortunately, at Jamie's 18-week ultrasound, the family learned from their doctor there was a problem. "We'd gone into the scan expecting to find out if we were having a boy or a girl, and found that they couldn't find all four chambers of our baby’s heart," Jamie says.
At a 24-week ultrasound, doctors diagnosed the couple's unborn daughter with pulmonary atresia with intact ventricular septum (PAIVS), a rare, congenital abnormality. Jamie and Destin weren't sure if their daughter would make it to birth.
Still, the family persevered, and baby Sanders was born March 7, at 38 weeks gestation. Doctors performed a cath procedure, which revealed that Sanders had RV-dependent coronary disease, and was not a candidate for surgery to fix the structural issues in her heart. At that point, the only remaining option for baby Sanders was a heart transplant.
A care team and community rally around the family
The start of Sanders' transplant journey brought her to Children's Health℠, the only health system in the area performing pediatric heart transplants. She was admitted to the ICU while she awaited a new heart. Unfortunately, her health continued to decline.
"We weren't even thinking about the new heart yet," Jamie says. "We were just thinking survive. Get through today so we can get through tomorrow."
Fortunately, the family had an extensive support system, which allowed Jamie and Destin to coordinate care for Bryce while staying close to Sanders. Caring for the new baby became a community affair, as members from the family's church assisted in sitting with Sanders or babysitting Bryce.
That familial care extended to the hospital team as well. Jocelyn Patrick, a nurse practitioner at Children's Health, became a special advocate for the family in the ICU, enabling Jamie to hold Sanders so she could bond with the newborn, despite the complexities of moving a baby connected to wires and machines. At one particularly difficult point, one doctor simply hugged Jamie while she cried.
Sanders continued to struggle, even needing a second procedure while in the ICU. "When you have heart failure, everything else is not so great," Jamie says. "Being in the hospital wasn't about getting better. It was about not getting worse so we could get a heart."
But the care in the ICU paid off. Six weeks after arriving at Children's Health, Jamie and Destin received word that a heart was available.
"It's amazing what it does to have a good heart in you"
Sanders' transplant surgery began at 4 a.m. on April 27. By 7 a.m., her new heart was beating in her chest, and by noon, she was back in her room with her parents.
"All the nurses were talking about how pink she would be," Jamie says. "She had color and she looked alive! It's amazing what it does to have a good heart in you."
Once she saw her baby, Jamie says, she felt her thoughts shift. "Your mindset goes from thinking of all the battles of trying to survive to the battle of recovery. Now we could think about bringing her home and dream about baby clothes and the nursery. We were moving in the right direction."
Jamie credits the support system of her community and Sanders' care team, including cardiologist David Sutcliffe, M.D., for helping them through their journey. "Dr. Sutcliffe came in every day to check if I'd been sleeping, if I'd eaten and if I'd been outside of the hospital that day. The staff was there to help all of us make it through, not just Sanders."
Dr. Sutcliffe says that caring for parents is a vital part of caring for a child, so that they have enough energy to be the main caregivers once they are able to go home.
"Life in the ICU can be really overwhelming, and it's easy to lose sight," he says. "It can be hard to see the forest when you're surrounded by trees. And when your focus is making sure your child doesn't have another life-threatening complication, when your every moment is preoccupied with how well your child will do until tomorrow, then you're staring at trees every day. It's our job to make sure families remember what the goal is at the end."
Embracing the challenges and treasures of everyday life
While Sanders experienced some ups and downs in recovery, her new heart allowed her to survive the things she went through. On May 24, Jamie and Destin were able to take Sanders home. "It's been hard, but it's also been pretty incredible," Jamie says. "There is hope. Something good is coming out of the hard things she has gone through. Her life has already affected so many others."
With Sanders and Bryce together, Jamie and Destin finally get to experience their dream with their children. Bryce talks about teaching Sanders how to read.
"I'm going to have two girls, who have each other as sisters, who will run around and enjoy life's treasures together," Jamie says. "We're going to get to experience life with her. It's hard to dream long term, but now we can think about them playing sports, maybe on the same team. Sanders can go to school and her sister can walk her in."
And in the interim, Jamie and Destin can enjoy the everyday moments with their little girls at home.
"We get to have mass chaos now!" Jamie says. "Doesn't everyone with two kids under two years of age experience chaos?"
The Heart Center at Children's Health celebrates 30 years of transforming lives through cardiac transplantation. The nationally renowned team of pediatric cardiologists and subspecialists treat the whole spectrum of heart problems, with a commitment to excellence. Learn more about our treatments and services.
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