Bendigo toddler thriving one year after having leg amputated

Words: Tara Cosoleto, Bendigo Advertiser 

Photos: Noni Hyett, Bendigo Advertiser 

Bendigo toddler thriving one year after having leg amputated due to rare tibial hemimelia condition

Leonardo Htoo Doe was only 16 months old when he went through a life-changing operation.

The Bendigo boy, now aged two, had his right leg amputated below the knee a year ago.

Leonardo was born with tibial hemimelia – a rare birth defect which affects only one in one million babies. It meant the tibia in his right leg was only partially formed.

In August, 2019, Leonardo had surgery at The Royal Children’s Hospital in Melbourne to amputate part of his right leg. Leonardo’s mother Yah Ruslin Kunoo said the surgery, and the subsequent year of recovery, all went to plan.

“We’re doing very well and coping very well,” she said. “Leo hasn’t been able to go outside and walk freely in the park because of COVID-19.

“But he’s been very happy – even though he gets grumpy sometimes. But other than that, he’s good.”

Ms Kunoo said Leonardo’s initial days of recovery were “hectic”.

“At night, Leo would dream about his phantom leg,” she said. “So he would miss his leg and he would wake up screaming at night, trying to reach for it. But it wasn’t there so he was traumatised by that a bit.

“But other than that, we gave him the proper medical treatments and care for him to heal well. He healed very well within two months.

“From there, we took his cast off and then two months after his surgery, he got his prosthetic. Since then, he’s been able to walk properly with his prosthetic.”

Ms Kunoo said her two-year-old son was now able to move around on his own.

“He adapted really fast,” she said. “He is now able to let go of my hands and his dad’s hands to walk by himself.

“The Bendigo hospital also lent their equipment to Leo so he could learn how to walk by himself. He knew how to walk within five months of using the equipment.”

The Royal Children’s Hospital orthopaedic surgeon Dr Chris Harris performed the surgery on Leonardo last year.

Dr Harris said there were very few amputations performed at The Royal Children’s Hospital each year.

“One of the things for doctors looking after children is that often a lot of the operations are technically not difficult,” Dr Harris said.

“But the biggest challenge is making the decision. We constantly want to make the right decision for the child.

“In terms of the surgery itself, children have a great record of recovery. Leonardo has done very well.”

Ms Kunoo said Leonardo had outgrown his current prosthetic leg and was due to receive a new one in October.

“We’ll get it fitted for him again,” she said. “They will create a new prosthetic for him that’s a different height.

“With this one, he’s able to walk with it but because his leg is getting bigger it’s getting a bit too small for him.

“So hopefully when he gets a new one he’ll be able to get a knee with it because this first prosthetic doesn’t have a knee.

“If he can’t, then we will just have to wait until he’s a few years older. But we’re wishing he could get one.”

Ms Kunoo said Leonardo was just as active as any other toddler – energetic and mostly happy.

“Everyone loves his new leg because he can play and do activities with everyone now,” she said.

“My partner’s family’s side, they were very supportive and very happy that we did it because most of his uncles get to play with him and take him out.”

While he would be old enough to go to kinder next year, Ms Kunoo said he wasn’t quite ready yet.

“I want to put him through kinder but because he requires a lot of care, I’m not going to push him towards it if he doesn’t want to go,” she said.

“His knowledge is very good. He can speak both Karen and English. He understands everything very well and knows all his manners.

“But physically, he needs more help so that’s why I’m just going to wait until he has the hang of it very well.”

Ms Kunoo said even though it had been a year since the surgery and Leonardo had recovered, she still had moments where she doubted her decision.

“A year on now, everyone is very happy that we decided to amputate,” she said. “Even though sometimes I look back and would like to have still kept the leg.

“I’m happy too but because Leo’s a person that I created, I have that attachment to him. But everyone loves his new leg because he can play and do activities with everyone now. It’s good.”

Dr Harris commended Leonardo’s parents for making the difficult decision to amputate.

“Leo parents made a really brave decision,” he said. “It was one that we were all in agreement with that it was the way to go. Our experience with other kids who have made this decision is that they have a full childhood.”

Dr Harris said the surgery Leonardo had would help him to prosper in life.

“The great thing about an amputation is that it allows the child to get along with their childhood without going through endless surgeries to make a leg that isn’t good look or seem good,” he said.

“The negative side is that you become prosthetic dependant. In a child, because they are growing, they will need to get new prosthetic.

“Even in the adult population they need their prosthetic renewed because they wear out. It’s like getting a new pair of shoes.

“But in Leonardo’s case, he would have been dependant on some sort of brace for a long time, or maybe forever.

“The real positive with the amputation is that he can have a very full childhood. And you see with modern prosthetic limbs, people can literally do any activity they want.

“You see pictures of people climbing rocks and doing all sorts of activities with prosthetic limbs. For Leonardo as a one-sided amputee, he can go forward really well.”

Ms Kunoo said she knew Leonardo would have a positive future.

“He has grown up very healthy,” she said. “We’re just happy that we gave him the surgery because that was very successful.

“He has turned into a very handsome and smart young man, even though he is very grumpy sometimes.But he’s doing very well with the prosthetic. I can see him having a very successful future.

“That’s what I’m most proud of – that he is coping very well even though he’s been put in this situation. He hasn’t backed down one bit.

“That’s what I’m happy about and why I’m so happy to be his mum, because I get to watch him succeed everyday.”

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