Henry Whitacre celebrates his 4th birthday early at Riley Children's Hospital in Indianapolis with his father, Kevin, and nurse Suzie Hedrick. On his birthday, which is today, he'll be receiving a new kidney. (Courtesy Emily Jones)
Wednesday, July 18, 2018 1:00 am
Kidney takes the cake on birthday
4-year-old gets new one at Riley today
CHARLOTTE STEFANSKI | The Journal Gazette
For most 4-year-olds, a birthday entails a cake, balloons and a mountain of presents.
As Henry Whitacre of Fort Wayne celebrates his 4th birthday today, he will be undergoing a kidney transplant at Riley Children's Hospital in Indianapolis.
Henry was born with a condition called posterior urethral valve, an obstructive anomaly that happens in utero, affecting about 1 in 8,000 boys, said Suzie Hedrick, a dialysis nurse at Riley.
With the condition, a bladder obstruction is caused by extra tissue that has grown inside the urethra, which causes the damage to kidneys.
“Basically, there were two flaps of skin that didn't work,” said his mother, Emily Jones. “Two tiny, tiny flaps of skin that didn't do what they were supposed to do. That caused all of this.”
For Jones and fiancé Kevin Whitacre, Henry's father, the problems began before Henry was born. It was supposed to be a routine 18-week checkup for Jones, whose pregnancy was going smoothly.
The nurse working said she had an opening for an ultrasound, even though the appointment didn't require one. Excited to see their baby for the first time, the couple said yes.
“She got the ultrasound started, but then it was almost like someone pressed play on a Lifetime movie,” Jones said.
A few minutes later, the nurse came back with a doctor, and from there, it was a blur.
Jones would have two fetal surgeries at Cincinnati Children's Hospital before Henry's birth, July 18, 2014. He was born eight weeks early and has since been operated on more than 30 times. His diagnosis, acute renal failure, was caused by the posterior urethral valves.
After four months in Cincinnati, Henry was transferred to the newborn ICU at Riley Children's Hospital.
“I remember walking into the newborn ICU and seeing this little chubby baby on oxygen,” Hedrick said. “He had the cutest cheeks ever.”
Hedrick, a nurse for about 25 years, has spent most of her career at Riley. Starting out taking care of newborns in the ICU, she later moved to dialysis treatments.
Once she met Henry, Hedrick knew she would be giving him dialysis treatments for the next three to four years, since he needed to grow big enough for his kidney transplant.
During those three years, Hedrick and Henry formed a special bond in the dialysis clinic. He even gave her a special nickname, “Wee-Wee,” and referred to the hospital as “Wee-Wee's house.”
“I take care of these kids like they're my own, treat them like they're my own, and I've always been the one to treat them how I would want people to treat my kids or grandkids,” Hedrick said. “So I just love on them as much as I can.”
Jones and Whitacre made the drive from Fort Wayne to Riley four to six times a week for Henry's dialysis. During the past three years, the family faced some scary moments, and they weren't always sure Henry was going to make it.
In November 2016, Henry had a bladder obstruction, which harmed the chances of his transplant. He underwent an eight-hour procedure to correct the problem. While the surgery went well, Henry developed a bleeding ulcer.
“Doctors were using words like 'bleeding out,'” Jones said. “We had a lot of conversations with doctors that ended with, 'I'm sorry.'”
One evening, Henry wasn't breathing well, and Whitacre and Jones stood around the 2-year-old's bed, holding his hand.
Jones said she told her son he fought so hard to get to this point, and it was OK if he didn't want to fight anymore. Henry squeezed her hand and fell asleep. In the morning, his health started to turn around.
“All we did was pray, and God heard us, and Henry heard us, and he started getting better the very next day,” Jones said.
Jones said “coffee and Jesus” has gotten her family through Henry's medical journey, and unexpectedly, a childhood friend also came to the family's aid.
Colleen met Jones in kindergarten, and the two graduated high school together. They lost touch once Colleen moved out of state.
During the holidays of 2017, Jones received a Facebook message from her old friend. It said Colleen was an initial match for Henry's transplant, and she would begin the paperwork for medical testing.
Doing laundry in her basement at the time, Jones fell to her knees, crying.
“I just thought, 'How?'” Jones said. “This person that I've know my whole entire life is now going to be responsible for allowing my son to have a better life.”
For his kidney transplant, the family and Hedrick remain positive and look forward to the next stage.
Up until this point, dialysis has kept Henry alive, but it limits him to a hospital room. While there is no cure for kidney disease, the transplant will allow him to live a normal life.
It also means Henry will be leaving his dialysis team behind, including his favorite nurse “Wee-Wee.”
“They're his people,” Jones said. “We actually, in prepping for this surgery, we've talked more about what's going to happen afterwards, that we're not going to see his people as much anymore.”
Hedrick says while they're losing Henry as a patient, their goal for every child is a successful kidney transplant, which will improve their quality of life.
“There have been times where we've thought, 'Oh my gosh, is he going to make it?' He always perseveres,” Hedrick said. “He's always been that fighter. You can see that in his eyes. You can see how much he's willing to fight.”