A brighter future for a young boy started with the biggest but easiest decision one family member ever made.
That was donating a kidney.
Max Berlyn Heffernan, the toddler son of Columbus native Kye Hawkins and her husband Ryan Heffernan, received the gift of a healthy organ a little more than 16 months ago from Hawkins’ cousin, Kassidy Galbraith of Columbus.
The boy had been receiving dialysis most of his brief life because an abnormality prevented his kidneys — bean-shaped organs that filter blood and remove wastes and excess water — from functioning properly. Dialysis is not intended as a long-term option, Hawkins said, and if Max were going to thrive and survive, he needed a better option.
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He needed a kidney transplant.
Fortunately, a willing donor was easy to find.
“I did not hesitate. It was the easiest decision of my life,” said Galbraith, 28.
And one that has made an impact in many ways.
Max, who is 3 and will turn 4 on Aug. 23, now is an active, vocal and growing boy with passions for lawn equipment and trucks. With Max no longer needing the constant care that he once did, his parents felt comfortable with growing their family. Hawkins and Heffernan are expecting their second child, also a boy, on July 24.
“Life now compared to life before is incalculably better — like worlds different,” said Hawkins, 34.
Joy turns to concern
Max was born Aug. 23, 2014, at IU Health North Hospital to Hawkins, a 2002 Columbus North High School graduate, and Heffernan, 34, whom she met at DePauw University.
Their moment of great joy soon turned to concern, however. Max couldn’t take deep breaths or let out a big cry, and his skin had a blueish tone. He was puffy and full of fluid, the couple said. Their baby boy was taken to the hospital’s neonatal intensive care unit.
About eight hours later, his parents learned that Max had Posterior Urethral Valves (PUV), a condition that affects 1 in 5,000 to 8,000 baby boys.
The condition is a blockage of the urethra, which drains urine from the bladder, and causes the baby’s urine to back up into the kidneys instead of passing through the urethra and into the womb in the form of amniotic fluid. The lack of amniotic fluid causes the lungs to be underdeveloped, and the urine backing up into the kidneys can poison them and render them useless.
The news hit hard.
“Just a lot of fear and anxiety,” said Heffernan, a market research director at Eli Lilly in Indianapolis.
Hawkins, however, said she almost blacked out that period, thinking naively that Max would be OK.
Reality set in the next morning when doctors allowed the parents to see Max again in the neonatal intensive care unit.
“That’s when it hit me — all the tubes, everything,” said Hawkins, a leadership consultant at ADVISA, a firm in Carmel that works with companies and organizations to hire, develop and better engage employees.
“I remember trying to walk into the parents cry room. That’s when I thought, ‘This is real, this is really happening.’ I had such an easy pregnancy and delivery. I was so happy about that, and then reality hit,” she said.
Other family members shared the same concern and confusion.
“It was sad, because not only did we not know what was going on. Neither did his parents. We all felt really helpless,” said Galbraith, a 2008 Columbus East graduate who works for Cummins Inc. in hospitality services.
Serious situation
Max’s parents and doctors decided to transfer Max to Riley Hospital for Children in Indianapolis, to receive care from pediatric kidney specialists.
Riley doctors diagnosed Max with several other kidney problems, including chronic kidney disease and end-stage renal failure. Simply, Max’s bladder and kidneys didn’t work because of the PUV.
His condition was one of the most serious and complex cases Riley’s neonatal nephrology team had ever encountered, Hawkins said a urologist told her.
Max started around-the-clock peritoneal dialysis — through his abdomen — when he was 10 days old. Eventually treatments were reduced to 14 hours a day. Kye Hawkins and Ryan Heffernan finally took Max home Oct. 31, 2014 — Halloween — after 69 days at Riley.
Home care for Max still required a lot of work. He required nightly eight-hour dialysis treatments and twice-a-day catheterizations to relieve his bladder. Max also received physical therapy, occupational therapy and seven daily medications, including a growth hormone to compensate for kidney dysfunction. Kye said having to give Max shots daily was an awful experience.
“It was really hard in that step of our lives, when all other families were having kids. Our lives were so abnormal with all the care he required. We couldn’t even leave our house for over two hours,” Hawkins said.
The impact rippled through the family.
Max’s condition prevented Hawkins’ parents, Jim Hawkins and Marcy Trisler, from keeping him at their house.
“As grandparents, we couldn’t have our first and only grandchild spend the night,” Trisler said.
While Max’s parents mastered the care he required, staying on dialysis long-term wasn’t realistic.
“Dialysis is something essentially only doing about 60 percent of real kidneys’ work. It’s not sustainable. If he could not get a kidney from a living donor, preferable, or a deceased donor, second, it was like a ticking time bomb,” Hawkins said.
Doctors didn’t talk about the possibility of death as much as the negative impact on Max’s growth, his development of gross and fine motor skills, and his speech, Hawkins said.
In December 2015, Max finally reached the height and weight requirements — about 3 feet and 25 pounds — to be considered for a kidney transplant.
The testing process for potential donors began in January 2016, and sometime after that a coworker of Heffernan’s told Hawkins and Heffernan about the Children’s Organ Transplant Association (COTA), an organization that provides fundraising assistance and support to families of children and young adults who need a life-saving organ transplant.
Max’s parents accepted COTA’s assistance on March 15, 2016, and a month later a fundraising campaign started for their son. A kidney transplant can cost about $500,000, and Heffernan said Max is a “$1 million-plus baby” because of his medical bills.
Heffernan said insurance has covered quite a bit, but the $30,000 raised so far through COTA will come in handy whenever needed.
“It’s an amazing organization,” Hawkins said, noting that the funds raised are good for Max’s lifetime, and can be used later when he’s an adult.
That’s important, because doctors told Max’s parents that he’s likely to need another kidney transplant in about 20 years.
Tremendous gift
Testing for donors began through Riley and IU health. It started with family members, and testing showed that three of Kye Hawkins’ cousins — Erin Hawkins, Brooke Hawkins and Kassidy Galbraith — and her sister, Lindsay Hawkins, were matches for Max. All expressed willingness to donate a kidney to him.
Erin Hawkins, of Columbus, was determined to be the donor, Kye Hawkins said. But she had a double blood vessel to her kidney that the surgeon thought would make connecting it in Max’s body too complicated, Heffernan said.
That set Galbraith in action. She contacted the transplant coordinator at IU Health and said she wanted to be the donor for Max.
The decision to help a young child with his whole life ahead of him was a no-brainer, Galbraith said.
When Kye Hawkins learned this news, her initial reaction was to discourage her cousin.
Maternal instincts kicked in, she said.
Kassidy is the youngest of the cousins, and Hawkins said she cared for her like a mother growing up.
“When Kassidy contacted me I said, ‘Stop it,’” Hawkins said.
When Kassidy persisted, Hawkins said, “No, you need (your kidney).”
However, Hawkins eventually came around to accept the idea, realizing that her cousin was making an adult decision that would help her son.
Plus, the risk was minimal because Galbraith was young and healthy.
“Why wouldn’t I do it?” Galbraith said.
A young kidney with less wear on it also is preferable to a kidney from an older person, Heffernan said.
Despite some initial concern that her kidney might be too large, because of her height (5-foot-11), late in 2016 she was determined to be a good match for Max.
Although Max spent more than two months at Riley, his parents chose Cincinnati Children’s Hospital Medical Center for the transplant — more than 100 miles from their Indianapolis home. Heffernan said the hospital had more experience with organ transplants in children, and Hawkins said they had become close to a surgeon there.
Max received his new kidney on Feb. 28, 2017.
Although eager, Galbraith reached an emotional moment shortly before she was taken into surgery.
“I cried before when the doctor put his hand on my leg and said, ‘This is a great thing you are doing,’” Galbraith said.
Galbraith’s surgery started about an hour before Max’s. The goal was to have the kidney out of the body for as little time as possible, Heffernan said.
Galbraith’s surgery lasted about five hours total, Max’s about seven to eight. He required a blood transfusion during the surgery because of all the blood involved in the procedure, Heffernan said.
Waiting for updates on the status of two family members was trying, Heffernan said.
“It’s not a day I want to relive,” he said.
But the change they saw in Max was quick and amazing.
“In the hospital before he left, he ate dark chocolate candy, a graham cracker, a bite of pizza and a potato chip,” Hawkins said. “It was astounding to us when he had been puking many times a day on dialysis.”
Galbraith returned home after five days in the hospital, and said she felt completely normal within four months, thanks in part to time off Cummins gave her. Max returned to his Indianapolis home three weeks after the surgery.
Significant improvement
Six months after the surgery, Max was finally eating normal food and enjoying it, Hawkins said. Equally important, they saw his speech improve to where he is now speaking in full sentences.
“It was unbelievable,” Hawkins said. “I am part of a kidney (support) group, and (the members) said it would be like a light bulb coming on, and he’ll take off.”
Max grew 3 inches in the first year after surgery and has gained about 20 pounds, Heffernan said. He also has all the energy one would expect of a young boy.
“It still leaves me speechless,” Galbraith said of Max’s progress.
Six months after the surgery, the family had a kidney-versary party to celebrate.
“I don’t think there was a dry eye there. Those are the moments, when the family is together and celebrating Max, where I feel the happiness,” Galbraith said.
If one didn’t know Max’s story, one might never know his life has been any different from other little boys, except for the gastronomy tube in his belly.
He requires infusions of water through the gastric tube to ensure his kidneys stay hydrated and healthy. Max needs 1,300 milliliters daily — more than typical for boys his age because he has an adult kidney, Heffernan said.
His parents give him 240 milliliters three times daily through the gastronomy tube, and Max drinks the remaining amount during the day, Heffernan said.
They pour the water into a syringe that is hooked to the port in Max belly. It takes about two to three minutes for gravity to do its work, Heffernan said.
Max also requires daily immunosuppressants to prevent his body from rejecting the kidney, his father said.
The process usually goes smoothly, Hawkins said.
“It’s more about getting him to stop what he’s doing. We’ve done it in gas stations, on benches — wherever it works is how we do it,” she said.
For Max, the infusions of water through the gastric tube are a normal part of life. Hospitals, doctors and machines are second nature to him, Hawkins said.
It’s when he sees other children without a gastric tube that he worries about their health, his mother said.
Max’s parents are hopeful that within a few years the gastric tube and catheterizations will no longer be needed.
Deep gratitude
Max understands some of what he’s gone through, his mother said. He knows he received a “kid-in-knee,” as he pronounces it, from Galbraith, and has a special connection to her.
“He says, ‘Thank you for my kindey,’” Galbraith said.
The family also has a nickname for Max’s kidney, “Pooter.” It stems from a joke within the family for any ailment a whining grandchild might have.
“Our grandfather Elmer Hawkins used to ask if us kids were whining, ‘Does your Pooter hurt?” Hawkins said.
While Max tells Galbraith “thank you” for his kidney, he’s not the only one who expresses gratitude.
“My cousin Kye says ‘Thank you’ all the time, and I feel like I’m the one who should be thanking them. It gave me a new perspective,” Galbraith said.
And for Max’s parents, too.
“You have no idea what it’s like to see a kid make big strides,” Hawkins said.
Hawkins said her cousin helped Max because she’s an “amazingly loving person.”
“It’s like a new level of girl crush on my family member,” Hawkins said.
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Max Heffernan’s mother, Kye Hawkins, has maintained a blog about the family’s journey with his kidney abnormality and eventual transplant. To learn more, go online at http://mightymaxheff.blogspot.com.
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To donate to Max Heffernan’s COTA fund, go online at cota.donorpages.com/PatientOnlineDonation/COTAforMaxH/
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“I did not hesitate. It was the easiest decision of my life.”
— Kassidy Galbraith of Columbus on donating a kidney to her nephew
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Children’s Organ Transplant Association (COTA), an organization that provides fundraising assistance and support to families of children and young adults who need a life-saving organ transplant, is observing National Cousins Day — when cousins are encouraged to reach out and celebrate family connections — in Indiana on July 24.
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