Edmonton baby born in the shape of a ‘C’ defies medical diagnosis

Click to play video: 'Edmonton Health Matters: preventing organ rejection & ‘C Man’'
Edmonton Health Matters: preventing organ rejection & ‘C Man’
WATCH ABOVE: Su-Ling Goh introduces us to a little boy whose body is shaped like a C. He's baffled his medical team, exceeding all expectations. – Jun 8, 2017

Rossy Hipkin was born bent over backwards.

He has severe scoliosis and Arthrogryposis Multiplex Congenita (AMC), a rare neuromuscular disorder that can greatly reduce mobility in the joints and muscles.

When his mother Corinna Heppner was expecting, she was told her baby might not survive as a result of his acutely curved spine. More than a year later, Rossy is active and happy, and keeps his mom busy.

“He was born and he kind of took it from there and showed them all who’s boss,” Heppner said.

Doctors nicknamed the baby “C Man” because he stayed in a severely curved shape during gestation.

They noticed the curve in his spine at 20 weeks. At that time, it extended past 90 degrees.

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Rossy was born in that shape.

“It was hard because you don’t want to see your baby with tubes and wires in a glass box,” Heppner said through tears.

He had to be revived once, but since then, he’s been as capable as any other baby.

Rossy crawls without using his arms, scratches his head with his foot and drives a power wheelchair with his legs. AMC has made it difficult for Rossy to use his arms due to a lack of muscle tone.

“He does it all his own way – nothing conventional the way he does anything,” his nurse, Kalyn Miller, said. “But he definitely does a lot of things that people thought he wouldn’t do.”

“It’s been inspiring,” Heppner added. “He’s so happy. And the words ‘can’t’ and ‘won’t’ and ‘don’t’ and ‘will never’ just don’t exist. They don’t exist for him.”

Doctors said it was unlikely Rossy would ever breathe on his own or lay flat, and that he might not live for very long.

“One in three kids with Arthrogryposis Multiplex Congenita, they don’t make it to their first birthday,” Heppner said.

Heppner said raising Rossy hasn’t been easy, but his happy demeanour makes it manageable.

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“Some days you wake up and you don’t know how you’re going to get through the day, but then you look at him and he just smiles through everything,” Heppner said.

“He’s been through more than anyone should ever have to go through in their lives, and he’s only a year old, and he’s still smiling.”

Miller noted that the medical bills associated with Rossy’s disease are expensive.

“Some of these things that aren’t covered should be because they’re a necessity for him to have a good quality of life,” she said.

“It’s a headache for everything,” Heppner added. “Everything he needs, it’s always been a fight.”

Despite the added expense, she said she wouldn’t change a thing about her son.

“I would do it again,” she said. “It’s worth it. It’s worth everything.”

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