Julia is the owner of Mini First Aid Salford, Bury & Bolton. When Julia's son Tom was born in December 2021, a routine newborn check revealed he had bilateral syndactyly - a condition where fingers are joined together. Here, Julia shares her family's experience, from diagnosis and surgery to recovery, and offers reassurance to other parents who may be starting a similar journey.
Hi Julia, tell us a little about Tom and your family.
Tom was born in early December 2021 and has an older brother, Leo, who is two and a half years older. We live in Stockport with dad, Ben, and we always say Tom was the best Christmas present ever.
Those first few weeks were busy with Christmas preparations and family visiting, but once everyone had gone home, we finally got to enjoy some quiet family bonding time.
How was your pregnancy and birth? Was anything picked up before Tom was born?
My pregnancy was straightforward. I had extra growth scans because my eldest son had been small at birth, but nothing unusual was ever spotted.
The syndactyly wasn't picked up during any of the scans, although I don't think anyone could have seen it. Even after Tom was born, most people didn't notice because you don't generally walk around with your fingers spread apart!
When did you first realise something was different?
It was during Tom's newborn checks. They noticed that the third and fourth fingers on both hands were joined, with some webbing between the fingers.
The doctors explained he had bilateral syndactyly. They asked if there was any family history, but there isn't.
At the time, I wasn't too upset. I knew there were other babies on the ward with much bigger challenges than ours, and I felt grateful that Tom's condition was something that could be treated.
Did you know what syndactyly was?
Not at all! I'd never heard of it before.
The consultant explained that it's actually one of the most common birth differences, and that we'd learn more once we met the plastics team.
What did doctors tell you about the cause?
They explained that syndactyly can sometimes be genetic, but neither my husband nor I have any family history of it. We also grew up around 200 miles apart, so it's very unlikely we're distantly related.
Sometimes there simply isn't an identifiable cause, and that's the case for Tom.
What treatment was recommended?
When Tom was around 10 months old, we met the plastics team. They arranged X-rays to make sure each finger had its own bones and blood supply.
They explained he'd need surgery to separate the fingers, but it would need to happen in stages to protect the blood supply.
I was really worried about him having a general anaesthetic, but I was relieved when they said they'd wait until he was older and his hands were bigger. They also reassured us that his fine motor skills weren't being affected because his tripod grip was already developing well.
How did you find the surgeries?
Honestly, I was terrified beforehand.
Listening to the Family Health podcast about preparing children for operations was a huge help because it explained exactly what would happen and why.
Tom was incredible. After his first operation, he was sitting up chatting away, eating Milky Ways and collecting bravery certificates and stickers. I couldn't believe my little two-year-old had just had surgery.
Recovery wasn't always easy. Keeping dressings dry with a toddler was challenging, and after his final operation both hands were bandaged, meaning he couldn't do anything for himself for a week. I suddenly realised just how much help a toddler needs when they can't use their hands!
He also had one operation delayed by over a year because of an administrative error, but in the end that meant surgeons could complete the final stage in a single operation instead of two.
How is Tom doing now?
He's doing brilliantly.
It's only been a few months since his final operation, so his scars are still quite noticeable and his hands remain sensitive, but they're healing beautifully.
He's so excited to have his "open fingers" and can't wait to wear proper gloves instead of mittens this winter!
Thankfully, syndactyly has never affected his movement or function. He developed a tripod grip for drawing when he was just two years old, and he's always been incredibly confident.
We've always been honest about his "stuck fingers" without making them seem like something negative. He's proud of how brave he's been. After his final operation, he happily showed everyone his hands, answered other children's questions, and even stood up in front of his class for Show and Tell to explain what he'd been through.
Watching him process everything through play has been amazing too. He often pretends to be the doctor, recreating everything that happened during his hospital visits.
What would you say to parents whose child has just been diagnosed with syndactyly?
Every child's journey is different because syndactyly can vary hugely in severity.
For us, Tom's case was relatively straightforward because each finger had its own bones and blood supply. Other families may face a more complex journey.
But the biggest thing I've learned is just how resilient children are.
They really are incredible. Whatever the journey looks like for your child, they'll probably cope far better than you expect. In many ways, it's harder for the parents than it is for them.
We’re so grateful to Julia for sharing Tom’s story with honesty and warmth. Experiences like this can feel overwhelming at the start, but as Julia beautifully shows, children are incredibly resilient, and with the right care and support, families can navigate even the most unexpected journeys. We hope Tom’s story offers reassurance to any parent facing a similar diagnosis today.
Listen to our podcast episode on children's operations that helped Julia, where we chat with Consultant Paediatric Plastic Surgeon Mr James Mercer about what to expect before, during and after surgery, and how families can prepare with confidence. This episode is available on all major platforms including Apple Podcasts and Spotify, or watch on YouTube.
All the best,
Jo @ Mini First Aid x
