A fa­ther’s gift of life

When a tod­dler needed a trans­plant, his fa­ther stepped up.

The Star Malaysia - Star2 - - Living - By NARA SCHOENBERG

CALVIN Hum­mel, whose kid­neys failed two years ago be­cause of a rare ge­netic mu­ta­tion, has spent more time in the hos­pi­tal than most adults. But the three-year-old is healthy, ac­tive and gain­ing weight like a champ, thanks in no small part to a kid­ney do­na­tion from his dad.

“It’s a weird feel­ing but a good one,” to think of your left kid­ney work­ing in your child’s body, said Gar­rett Hum­mel, 32.

“I re­mem­ber when one of our friends who do­nated a kid­ney said, ‘I’ve al­ways wanted to save a life’ – that was one of her bucket list goals. And to be hon­est, that never oc­curred to me; to me, it was kind of the re­quired thing – it was just some­thing that you’re do­ing for your kid.”

It’s rare for a child as young as Calvin to need a kid­ney. Last year, Calvin was one of only 36 Amer­i­can chil­dren un­der age five to re­ceive a kid­ney do­nated by a par­ent, ac­cord­ing to data from the United Net­work for Or­gan Shar­ing.

Among the pos­si­ble ex­pla­na­tions for the de­crease: Par­ents are hav­ing chil­dren later, and health prob­lems such as high blood pres­sure are start­ing ear­lier. Those fac­tors may be mak­ing it more dif­fi­cult for par­ents to get cleared as trans­plant donors, ac­cord­ing to Dr Amy Bo­browski, med­i­cal di­rec­tor of the Kid­ney Trans­plant Pro­gramme at Lurie Chil­dren’s Hos­pi­tal in Chicago, Illi­nois, the United States.

Calvin was a seem­ingly healthy baby, and his par­ents were ex­pect­ing a rou­tine lo­cal emer­gency room visit when, at 10 months old, he caught a virus and stopped eat­ing and pro­duc­ing wet di­a­pers.

In­stead, doc­tors said he was hav­ing kid­ney prob­lems, and an am­bu­lance trans­ported the Hum­mels di­rectly to Lurie Chil­dren’s Hos­pi­tal, where Calvin would spend the next week.

“It was a shock; it re­ally was,” said Calvin’s mum, Heidi.

Calvin had in­fan­tile nephrotic syn­drome as a re­sult of a new mu­ta­tion on his WT1 gene, a mu­ta­tion that was not car­ried by ei­ther par­ent. He would need a kid­ney trans­plant, his par­ents were told, al­though not im­me­di­ately. At that point, his kid­neys were still func­tion­ing at 60% or 70%.

Within about two months, his kid­neys failed com­pletely, and he em­barked on an 11-week hos­pi­tal stay.

“It was hor­ren­dous. Lots of com­pli­ca­tions. Mul­ti­ple surg­eries. And he needed im­me­di­ate kid­ney dial­y­sis,” Heidi said.

Be­fore dial­y­sis – when he was re­tain­ing fluid due to kid­ney fail­ure – Calvin’s eyes puffed up almost to the point that they couldn’t open. His lips looked as if they’d been stung by bees.

“He hardly had an­kles,” said Heidi. “Like, I don’t know how his skin stretched as far as it did. His feet were so puffy. He looked like the Miche­lin Man.”

Over the course of a year, Calvin went through more than 500 hours of dial­y­sis.

Both his par­ents were will­ing to be kid­ney donors: “When it’s your kid, you’ll do any­thing for them,” Heidi said.

But the Hum­mels de­cided Gar­rett was the log­i­cal first choice to be tested for com­pat­i­bil­ity. They wanted an­other baby soon, and they didn’t want to have to wait for trans­plant surgery and re­cov­ery for Heidi, which could eas­ily have taken a year.

Hum­mel and Calvin were a good match, and surgery went smoothly.

Hum­mel got through the pain­ful cramps of early re­cov­ery, and his one re­main­ing kid­ney ad­justed to do­ing the work of two. Within a year, he said, he felt pretty much as good as new.

To­day, Calvin, who grew 15cm in the year af­ter his trans­plant, is mak­ing up for lost time.

“He’s do­ing great. He’s re­ally thriv­ing,” said Dr Bo­browski, who is his kid­ney doc­tor. “The kid­ney it­self is work­ing great. He’s do­ing re­ally well – you re­ally can’t ask for more. They’re ob­vi­ously a very good fam­ily and take awe­some care of him, so that helps.”

Trans­planted kid­neys last 10 to 12 years on av­er­age, she said, but in the case of young re­cip­i­ents and liv­ing donors, they can last sig­nif­i­cantly longer. If Calvin’s kid­ney fails, he could get an­other trans­plant.

Calvin, who has to take med­i­ca­tion and still gets his nu­tri­tion through a feed­ing tube, has to be care­ful about con­tact sports, but he can run and jump and play, go to school, and make age-ap­pro­pri­ate mis­chief.

That’s what he and his lit­tle brother Henry, 14 months, were up to dur­ing a re­cent visit to the Hum­mels’ home. Calvin, who has a ten­dency to wrin­kle his brow and raise his left eye­brow when he’s think­ing hard, showed off his im­pres­sive spell­ing skills and his ex­cel­lent man­ners: “Bye-bye! Thank you for vis­it­ing me.”

Re­flect­ing on ev­ery­thing Calvin has been through, the Hum­mels rarely got emo­tional. At the time, they had to push aside their fear and an­guish, and just do the best they could for their son, they said.

But Hum­mel does get a lit­tle misty-eyed when he talks about all the peo­ple who pitched in when friends and fam­ily held a fundraiser with the help of the Chil­dren’s Or­gan Trans­plant As­so­ci­a­tion.

“It’s amaz­ing to see,” said Hum­mel, an ad­min­is­tra­tor for the vil­lage of Wil­low­brook. “You don’t re­alise how wide the net is that you cast. I’m not Mr Out­go­ing by any stretch but we had an event for Calvin, and it had more peo­ple than our wed­ding. You get mar­ried, and you think, ev­ery one of your friends will be there. But we had a fundraiser for our kid, and ev­ery one of our friends and their friends were there.” – Chicago Tri­bune/ Tri­bune News Ser­vice

Hum­mel and Calvin look­ing at their surgery scars. Calvin de­vel­oped kid­ney fail­ure as a baby and, af­ter dis­cov­er­ing he was a match for Calvin, Hum­mel gave his left kid­ney to his son. — TNS

Newspapers in English

Newspapers from Malaysia

© PressReader. All rights reserved.