The odds seem to have been stacked against two-year-old Hank Shockney since the day he was born.
Medical experts said the Westminster, Maryland, United States, boy, born with kidney disease, may not survive more than a few days.
A urinary tract obstruction that had occurred in the womb caused a backup of urine from his bladder, which irreparably damaged his kidneys, and he faces a lifetime of medical complications as a result.
But there are many reasons to hope, his parents Jessica and Steve Shockney say.
Hank received a lifesaving kidney transplant earlier this month from his mother, Jessica, 40, and both are well on the road to recovery.
Jessica said on Aug 18 (2023) that she was sore from the Aug 4 (2023) procedure at Johns Hopkins Hospital in Baltimore, Maryland, but recovery has been better than expected for both her and her son.
“I feel, physically, really well,” she said.
“I’m anxiously watching all of his labs hoping that my kidney is doing a good job, and so far, it is.
“I don’t think that’ll ever go away – I’ll always be anxious to be making sure the kidney’s still working.”
Transplant, the solution
With a bit of luck, his parents hope Hank’s new kidney could last for decades.
“This is the light at the end of the tunnel for this whole last two years,” Steve, 39, said.
It was determined that Jessica’s kidney would be a good match after numerous examinations to confirm that she was physically capable of being a donor.
The transplant had been scheduled for Aug 22 (2023), but Hank suffered a medical emergency during a July 28 (2023) operation, making it necessary for the transplant to occur sooner.
“We knew pretty much right from the beginning that [Hank] was going to need a kidney transplant,” Jessica said.
“It’s not a cure for his kidney disease, it’s just a treatment.
“The best treatment they have is a kidney transplant, and it won’t last him a lifetime; we’ll need multiple transplants in his lifetime.”
The size of a two-year-old child, coupled with the risks associated with keeping a child on long-term dialysis, makes two the target age for a kidney transplant, according to Dr Bradley Warady, director of Dialysis and Transplantation and Pediatric Nephrology at Children’s Mercy Hospital in Kansas City.
A living adult is the ideal candidate to donate a kidney to a child, and the average transplanted kidney from a living donor works for 15 to 20 years, said the US National Kidney Foundation board member.
He noted though that those who are otherwise in good health and who avidly take their medication can extend that time frame by a decade or more.
Not giving up
Jessica said the family learned of Hank’s medical condition while she was pregnant, and doctors several times recommended terminating the pregnancy.
“It was presented to us as an option,” she said.
“My husband and I just never felt like it was our decision to make.
“We’re Christians and we couldn’t imagine being the ones who make that decision.
“We never felt like we didn’t have hope, so we continued on.
“Of course, things were a lot harder than we thought they would ever be.”
Cases like Hank’s are rare and uniquely complex, Dr Warady said, and medical recommendations regarding termination of pregnancy are far from standardised.
Hank was also born with underdeveloped lungs, and terminating a pregnancy is usually presented as an option in cases in which a fetus has problems with their kidneys and another organ, he added.
“Different experiences, different perspectives and different emotions are all part of this very complex situation that arises,” he said, “and I think that’s why there has been a lack of a single, uniform, well-defined approach to these kids.”
Underdeveloped lungs were the first life-threatening hurdle for Hank to overcome and one of many medical complications the child has faced in his two years of life.
“The hardest part was being pregnant and not even knowing if he was going to survive at all,” Jessica said.
“Then once he was born, we weren’t really prepared.
“We were prepared for him either to survive or not survive, we weren’t prepared for him to spend seven-plus months in the hospital.
“That was a shock.”
Steve said his son was baptised while hooked up to an oxygen machine.
The couple were asked to come up with a plan detailing what would happen in any scenario of medical uncertainty, which Dr Warady said is standard practice.
“That was kind of their nice way of saying they didn’t think he’s going to make it,” Steve said.
Jessica said she never considered giving up on her son.
The couple have three other children ages 13, 10 and six, all of whom were born healthy.
Steve said Hank’s journey has been a trial for the entire family, but they have been fortunate to have supportive friends and family in the area, including all four of the children’s grandparents.
The first several months of Hank’s life, during which he was hospitalised in the neonatal intensive care unit at Johns Hopkins, were particularly challenging for the family.
A Baltimore City firefighter, Steve said he became accustomed to visiting his son after his 24-hour shifts.
Jessica is a stay-at-home mum and was also at Johns Hopkins frequently.
“There wasn’t much getting done at home basically,” Steve said.
“We were just trying to do laundry, do dishes and get the kids off the school.
“All of our days were spent with one of us being at the hospital.”
Since then, the family has been able to stay overnight in Baltimore at the Believe in Tomorrow Children’s House, across the street from Johns Hopkins, as Hank received care.
The facility provides overnight accommodation, free of charge, to families of children receiving critical care treatment at Johns Hopkins Children’s Center.
The at-home care Hank received included a gastrostomy tube, central line and dialysis catheter, Jessica said, which means he had to be constantly supervised.
“There were three things hanging off his body every day, which all could be life-threatening if he got a hold of them,” she said.
The parents tried to provide as much normalcy as possible for their other three children, Steve said, and he often went straight from the hospital to his other kids’ sports games.
After Hank was allowed to receive dialysis from home, Jessica said his siblings were often recruited to help with tasks like holding their brother while a parent administered a shot.
“It’s kind of weird that this has become normal to them,” she said.
Hank also has developmental delay and a low appetite, according to Jessica.
He vomited every day while on dialysis and has yet to eat solid food by mouth.
At one point in time, he had to be medically paralysed for over two months.
“He’s only a two-year-old, so every day was high stress,” Jessica said.
“But overall, he’s a very happy guy.”
A smiley boy
Jessica said her son suffered no permanent brain damage from his life’s rocky start and is expected to begin school on a normal timeline, even if it means a few years of playing catch-up.
Hank currently talks, but does not yet walk.
The toddler had to take immune system suppressants in preparation for the transplant, and they have permanently weakened his immune system, Steve said, so he will visit doctors more frequently than an average kid.
After being released from the hospital post-surgery, Hank must visit Johns Hopkins three times a week for at least several months.
Despite the circumstances of his birth and medical treatments, Hank has remained positive, and Steve said that his outgoing, personable nature only deepens as he grows.
“He’s super sociable,” Steve said.
“They always told us – even when he was in the hospital, when he was young – how happy and sociable he was, compared to a lot of kids that were institutionalised in the hospital setting.
“He’s always super outgoing when he feels good, and he’s super happy, super smiley.”
The family has documented Hank’s journey through his first two years of life on social media. – By Thomas Goodwin Smith/The Baltimore Sun/Tribune News Service