During a routine doctor’s visit, Sandi had an ultrasound to make sure her child was developing normally. Due to the baby’s position, the technician wasn’t able to get a clear image of the heart.
“We’ll get it next time,” the technician assured.
However, there wasn’t going to be a next time.
Jack arrived prematurely a few weeks later. Soon after, his parents learned he had a problem with his heart. Jack was also born with Down syndrome.
The couple was shocked by the news. “Up to that point, there had been no indication that anything was wrong,” Sandi said.
At 2 days old, Jack was in congestive heart failure. He spent the next 30 days in Akron Children’s neonatal intensive care unit at Akron City Hospital, and then another 30 days in the NICU at Akron Children’s Hospital.
The Cleavengers knew he would need surgery to repair and reconstruct the valves in his heart once he was a little older and stronger. Once again, Jack had other plans.
After 6 days at home, Jack had open heart surgery at Akron Children’s Hospital, followed by a month-long stay in the pediatric intensive care unit. He was 3 months old.
“The same day that Jack was put on a ventilator in the PICU, I had to resign from my job,” said Sandi, who worked as a nurse at a local hospital.
Easing the burden
“I immediately thought of end-of-life care,” Sandi said.
However, Marlene Hardy-Gomez, a nurse practitioner at Akron Children’s Haslinger Family Pediatric Palliative Care Center, explained that one of the roles of palliative care is to help ease the burden for families facing a child’s serious or chronic illness.
The center’s staff helped the Cleavengers by answering medical questions regarding Jack’s diagnosis, coordinating his care with numerous specialists and home health nursing agencies, and providing financial assistance.
A few months before Jack was born, the Cleavengers had bought a new home, so the loss of Sandi’s income made it difficult to pay all their bills. The palliative care team referred them to the River of Life Fund, which provided assistance with their mortgage payment.
They also received vouchers for parking and gift cards to local restaurants through the center’s Courage for Carina Gift Card Fund.
“Being able to go out to dinner once in a while was a nice break and gave us some sense of normalcy,” Sandi said.
A nurse from Children’s Home Care Group, who provided care to Jack, told her about a job opening at Children’s. Sandi got the job as a home health nurse and started the week of Jack’s first birthday.
“I’ve always wanted to work at Children’s,” said Sandi, who now works in our surgery department. “I love the environment and the philosophy of providing family-centered care.”
While Sandi is at work, Jack attends day care at Summit County Developmental Disabilities Board. A nurse is available there since Jack continues to be tube fed through his stomach for a condition known as delayed gastric emptying.
Today, Jack is a sweet, happy toddler who loves to play. He’s also learning sign language to help him communicate and enhance his ability to learn and develop.
“When Jack was born, I was worried about having a child with Down syndrome,” Sandi said. “But if I would have known then what I know now, I would have felt very differently. He has brought us so much joy.”