Henry was diagnosed in utero with a bladder condition that prevented his kidneys from developing normally, leaving him with end-stage renal disease at birth.
By Maureen C. Gilmer, Indianapolis Star
Henry Whitacre is munching on Cheetos on a Thursday morning, lost in the world of "PAW Patrol" on his tablet. He's tethered to a dialysis machine that hums as it quietly does the work his malformed kidneys can't.
This is the quiet Henry, the laid-back Henry. But within a few minutes, the raucous Henry takes over. Goaded by nurses who challenge him to a game of basketball in his hospital crib, the 3-year-old comes alive with laughter — a throaty, contagious chortling that fills the outpatient dialysis unit at Riley Hospital for Children at IU Health.
Henry was diagnosed in utero with a bladder condition that prevented his kidneys from developing normally, leaving him with end-stage renal disease at birth. Born at 31 weeks' gestation, he spent several months in neonatal intensive care. He's been coming to Riley from his Fort Wayne home four days a week for four-hour dialysis treatments for as long as he can remember.
[post_ads]He's about 3 feet tall and weighs 29 pounds, closer to a 2-year-old in size, but he makes up for his small stature with a big personality.
"He's a peanut," says mom Emily Jones. "But he's like a teenager in a 3-year-old body. He's already got the eye roll down."
As if on cue, Henry lets out another belly laugh that reverberates around the room filled with beds and cribs but otherwise empty on this day except for two nurses, two journalists, a hospital staffer and Henry's mom.
Jones, 28, describes her only child as fearless "and a little reckless."
"I don't think he realizes he has limitations. This," she says, with a sweep of her hand over the room, "is all he's ever known."
Fast forward six days to Wednesday, July 18. It's Henry's birthday. He's 4 years old, and he's getting a Mr. Potato Head, he says. Well, that and a new kidney.
A transplant has been a goal since Henry was deemed big enough and healthy enough to handle the surgery, but a birthday transplant wasn't exactly planned, his mom said. Still, what better gift for her little boy than a chance at a normal life?
Facebook delivers a kidney
Luckily for Jones and her fiance, Kevin Whitacre, the story gets better.
A long-lost friend of Jones' stepped up to donate her kidney after seeing an emotional plea from Jones on Facebook last winter.
"That post came from a moment of desperation," Jones said. "I didn't mean for it to be pitiful, but it was raw."
Jones and Colleen Carnes were best friends when they were not much older than Henry. Growing up in Huntington, they went to school together, joined Girl Scouts together, camped together and got in trouble together.
"There's not a childhood memory that I have that doesn't have her in it," Jones said.
They drifted apart in high school, attended different colleges and embarked on their own careers, though they remained Facebook friends.
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Jones was in the basement of her Fort Wayne home doing laundry not long after Christmas last year when she saw a Facebook message Carnes sent her seemingly out of the blue. There was no "hi, how are you," she said, just this: "Hey, I talked to your donor (coordinator), I'm a match, send me the paperwork to start the testing." At least that's how Jones remembers it.
She read it once, then again. She screamed for her fiance and fell to the floor. "Colleen's going to give Henry her kidney!," she wailed. Kevin Whitacre didn't even know Colleen, but he held Jones as the two laughed and cried together.
Up to that point, while a handful of people had inquired about donating, nothing had worked out. Before contacting Jones, Carnes had already confirmed that she was an initial match, and she was firm in her decision to donate, Jones said.
"I kind of knew then that this is who is going to give her kidney to my kid. It's surreal for me to think about the fact that I have a child that requires all this. But to know that somebody else is willing to step in and say 'I want to give you this gift,' I don't think the reality has completely sunk in."
'Rock star' surgeon On Wednesday morning, his 4th birthday, Henry was wheeled into the Riley operating room for his transplant surgery, to be performed by Dr. William Goggins, profiled as part of IndyStar's organ transplant series this spring.
Goggins, Jones said, is a rock star. The director of adult and pediatric kidney transplantation at IU Health has performed more than 2,000 kidney transplants, though none quite like Henry's.
"This transplant will be a little more challenging for Dr. Goggins," said Dr. Amy Wilson, pediatric nephrologist at Riley who has treated Henry almost since birth. Part of that is Henry's size, part is because Henry has had more than a dozen abdominal surgeries in his young life.
"He manages to be a pretty happy kid despite his illness," Wilson said, as Henry chattered in the background. "Our hope is that this transplant gives him even more energy and the ability to really and truly thrive."
On the afternoon of July 18, hours after Henry went into the operating room, Jones texted: "They are sewing in the new kidney right now!"
At about 5:20 p.m., she posted on Facebook: "Folks ... we have a kidney! Per Dr. Goggins himself it went smoothly and everything was great and it’s already producing urine and is working!"
Jones expects this kidney to be the first of three that her son will need in his lifetime. The average life span of a transplanted kidney is 12 to 15 years. A bionic, or artificial, kidney currently under development could address a chronic shortage of donor kidneys needed for transplant.
Once Henry recovers from surgery, Jones looks forward to establishing a normal family life.
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"It's been a journey that I was not prepared for, but I've learned to adapt," she said. "We've learned so much about Henry and about ourselves and about the kidney team and how the body works. Kidney disease doesn't have a cure, but (a transplant) does present more opportunity and more than these walls and being tied to a machine."
Still, she said, "it's exciting, it's terrifying, and it will come with complications. But the fact that it's all being made possible by somebody else ... I don't know that there are words. Grateful and thankful are not enough. Humbled doesn't even cut it, but they're starters. And that's how we feel. We're beyond grateful for our donor."
Carnes, 28, was not ready to speak about the surgery before today, but Jones said simply this about her friend: "She does what she thinks is right, and she doesn't care much for what other people think. For me, this is a window of opportunity to make up for lost years."
Henry wasn't able to eat cake on his birthday, but his parents threw him a party and transplant sendoff over the weekend. Surrounded by the love of family and friends and the laughter of her son, Jones was filled with gratitude.
"He's a fun kid and we got really lucky when God picked us to be his parents."
"There's not a childhood memory that I have that doesn't have her in it," Jones said.
They drifted apart in high school, attended different colleges and embarked on their own careers, though they remained Facebook friends.
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Jones was in the basement of her Fort Wayne home doing laundry not long after Christmas last year when she saw a Facebook message Carnes sent her seemingly out of the blue. There was no "hi, how are you," she said, just this: "Hey, I talked to your donor (coordinator), I'm a match, send me the paperwork to start the testing." At least that's how Jones remembers it.
She read it once, then again. She screamed for her fiance and fell to the floor. "Colleen's going to give Henry her kidney!," she wailed. Kevin Whitacre didn't even know Colleen, but he held Jones as the two laughed and cried together.
Up to that point, while a handful of people had inquired about donating, nothing had worked out. Before contacting Jones, Carnes had already confirmed that she was an initial match, and she was firm in her decision to donate, Jones said.
"I kind of knew then that this is who is going to give her kidney to my kid. It's surreal for me to think about the fact that I have a child that requires all this. But to know that somebody else is willing to step in and say 'I want to give you this gift,' I don't think the reality has completely sunk in."
'Rock star' surgeon On Wednesday morning, his 4th birthday, Henry was wheeled into the Riley operating room for his transplant surgery, to be performed by Dr. William Goggins, profiled as part of IndyStar's organ transplant series this spring.
Goggins, Jones said, is a rock star. The director of adult and pediatric kidney transplantation at IU Health has performed more than 2,000 kidney transplants, though none quite like Henry's.
"This transplant will be a little more challenging for Dr. Goggins," said Dr. Amy Wilson, pediatric nephrologist at Riley who has treated Henry almost since birth. Part of that is Henry's size, part is because Henry has had more than a dozen abdominal surgeries in his young life.
"He manages to be a pretty happy kid despite his illness," Wilson said, as Henry chattered in the background. "Our hope is that this transplant gives him even more energy and the ability to really and truly thrive."
On the afternoon of July 18, hours after Henry went into the operating room, Jones texted: "They are sewing in the new kidney right now!"
At about 5:20 p.m., she posted on Facebook: "Folks ... we have a kidney! Per Dr. Goggins himself it went smoothly and everything was great and it’s already producing urine and is working!"
Jones expects this kidney to be the first of three that her son will need in his lifetime. The average life span of a transplanted kidney is 12 to 15 years. A bionic, or artificial, kidney currently under development could address a chronic shortage of donor kidneys needed for transplant.
Once Henry recovers from surgery, Jones looks forward to establishing a normal family life.
[post_ads_2]
"It's been a journey that I was not prepared for, but I've learned to adapt," she said. "We've learned so much about Henry and about ourselves and about the kidney team and how the body works. Kidney disease doesn't have a cure, but (a transplant) does present more opportunity and more than these walls and being tied to a machine."
Still, she said, "it's exciting, it's terrifying, and it will come with complications. But the fact that it's all being made possible by somebody else ... I don't know that there are words. Grateful and thankful are not enough. Humbled doesn't even cut it, but they're starters. And that's how we feel. We're beyond grateful for our donor."
Carnes, 28, was not ready to speak about the surgery before today, but Jones said simply this about her friend: "She does what she thinks is right, and she doesn't care much for what other people think. For me, this is a window of opportunity to make up for lost years."
Henry wasn't able to eat cake on his birthday, but his parents threw him a party and transplant sendoff over the weekend. Surrounded by the love of family and friends and the laughter of her son, Jones was filled with gratitude.
"He's a fun kid and we got really lucky when God picked us to be his parents."
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