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Edinburgh Live
Edinburgh Live
National
Iona Young

Edinburgh mum had never heard of rare condition before her baby was born

A proud Edinburgh mum has thanked hero medics after her son was born with a rare condition meaning he has missing bones that will shorten his limbs.

Rosie Paterson, 33, and Leo Thompson, 25, got the shocking news that their unborn son had a radial deficiency which meant he could be born without arms and face further complications.

The mum is hugely appreciative over the "incredible support" she has been given since finding out the news from staff at Edinburgh's Sick Kids - and has found the experience of being a new mum different to what she expected.

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She is now taking on the Edinburgh Half Marathon with her sister Fiona to raise money for the incredible hospital and its staff.

Speaking to Edinburgh Live the mum said: "Asa was born on January 17 this year, we had found out at the 12-week scan that he wasn't going to have a left arm and they couldn't see the radius bone in his right arm.

"After that, we had scans every three weeks to monitor his progress. Before he had even been born we met with a psychiatrist and a plastic surgeon at the Edinburgh Children's Hospital to discuss his treatment and to offer us support while we adjusted to the news.

"They were absolutely incredible and supported us with getting ready to have a baby with a disability. Orla the psychiatrist told us to get in touch the day he was born and from there they were always around to support us.

"The consistency of support was amazing and the care was so special from the start it was just incredible. The day after he was born we had to start getting tests and full body X-Rays.

"I got so upset walking into the department but there were staff there as soon as we walked in the door to support us. It's such a special place to go when it's already such a difficult time."

Radial deficiency is a congenital hand anomaly where the radius bone in the arm is missing or underdeveloped, causing the hand to be bent towards the body.

It can affect all the structures on the radial side of the upper limb, including the bones and soft tissues and the thumb may be absent or smaller than usual with poor joints and missing muscle tendons.

Rosie continued: "Asa is four months old now. He is a really chilled-out baby, I was induced and he was born two and a half weeks early because he had a high heart rate and was already a high-risk baby.

"They told us from the 12-week scan there could be complications but so far all the tests on his heart and kidneys have come back negative which is wonderful and we are meeting a physio every month who is working on Asa's arms to gain mobility and strength.

"Asa was born with a really small left arm and a good size right arm, he was also born without thumbs and will have to adapt and learnt to do things differently from other babies. He is already booked in for correctional surgery next March."

The young couple had never heard of the rare condition before finding out their unborn child had it at the 12-week scan.

Rosie explained: "You never think something like this could happen, there is no explanation or family history of the condition so it was hard at first not to blame myself.

"I got really upset, and thought because I was growing him inside of me it was my fault."

Little Asa is thriving and getting on well despite his disability.

"People don't stare at him in the street and barely notice that he is different. I expected it to be a lot harder to deal with. We didn't want to tell anybody at first as we were so upset and totally in shock.

"After the 12-month scan they had to do further tests and there was a possibility he could have other conditions but they would not know until he was born.

"We knew there was a chance that the worst could happen but even then we wanted to give him a chance, now he is four months old and getting on really well.

"He is learning to chatter away, he is so bright and just an angel. He is so chilled out and calm too, we can still do everything we did before as a couple - we even took him out with us for dinner when he was two weeks old and he just slept right through," she said.

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Rosie and her sister Fiona will take on the Edinburgh Half Marathon this weekend to raise money for the Sick Kids who have become such an important part of the family's life.

She added: "Me and my sister signed up to do the Edinburgh Half Marathon before to raise money for the Edinburgh Children's Hospital Charity, we just wanted to give something back.

"I had an infection when I gave birth to Asa so had to stop training for a bit. We are feeling nervous now but excited - I have my shorts and t-shirt ready for the good weather so maybe I'll get a sun tan.

"We have raised loads so far and can't believe how generous everybody has been - it's amazing."

You can find out more and donate to the fundraising page here.

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