Toddler born with rare condition has toes amputated - so he can finally walk

The parents of a toddler born with a rare condition made the agonising decision to let doctors amputate their son's toes - so he could finally take his first steps. Brodie Arbon-Davis, one, was born with the PIK3CA mutation - which causes blood vessel and lymphatic malformation on the bottom half of his body.

His condition means his feet were filled with fluid, his blood vessels were malformed and scans showed he only had two functioning toes on each foot. Brodie was left in agony - and doctors told his mum, Holly-Louise Mackie, 26, that the tot would never walk unaided or wear shoes.

But she took a chance and in November last year, Brodie had surgery to amputate his toes in the hope it would reduce pain, thus allow him to walk. He tried to walk just hours after the op - and it was a huge success. Now, despite the odds, Brodie is walking unaided and has started nursery.

Holly-Louise, a full-time mum, from Dover, Kent, said: “Brodie was born this way - and it’s a blessing in disguise. He can’t do the stuff other kids are doing - but he’s thriving anyway. He’s a strong little fighter.

"We always knew some type of surgery like this would happen. The day after his operation he was trying to walk around. His mobility is a lot better than it was and he isn't in pain anymore."

Brodie was born nine weeks prematurely, weighing 5lbs 4oz, on 26 November, 2021, after Holly-Louise says she “coughed one day” and her “waters just broke”. There were no pre-birth worries, and Holly-Louise and partner, Liam Arbon-Davis, 27, a builder, believed Brodie's premature birth would just make him “short”.

But as soon as Brodie was delivered, his parents could see there was something wrong. She said: “His legs were ridiculously swollen and purple when he was born - at first, I thought it was a port wine stain.

“He had to go through so many tests within the first month - no-one knew what was wrong with him. He had bloods, and they did ultrasounds on his kidneys and a skin biopsy. That was when they found the mutation.

“The PIK3CA mutation is basically a malformation in the blood vessels - affecting the lower half of his body. It wasn’t hereditary - neither myself or my partner carried it. It’s what they call a mosaic anomaly - just a freak accident, basically.

“It was heart-wrenching - but I loved him to pieces as soon as I first saw him. He spent a month in the NICU - and doctors found he had deformities on each foot, a build-up of fluid in both legs, cysts on his kidneys and a bone marrow thickening from the waist down. His legs are in the 0.4th percentile - which means his bone quality is very low. He’ll never be able to walk unaided.”

Brodie was allowed home from the NICU on 23 December, 2021. He was in pain - especially at night - and because Calpol “wouldn't touch it” he had to take oramorph, a type of liquid morphine.

In November 2023, Brodie had his toes amputated at Great Ormond Street Hospital, London. Holly said: "He can take a good five to six steps unaided now. He really pushes himself. He will let go of the sofa and try to walk across the room. Even if he falls he will get back up and go again."

Brodie started nursery last month and has to wear specially made shoes that fit his feet. Holly said: "He really has come out of his shell, he has really taken to nursery life. To the point, he has a go at us as he doesn't want to leave. Brodie is so funny, he is giggly and crazy, you wouldn't think he has the conditions he is living with."