By Kirsten & Tom Viney
Shared from Within Reach Magazine Winter 2025. Read it now!
We’re Tom & Kirsten; parents to Arlo (5) and Reach member Quinn (6 months).
We were fortunate to find out about Quinn’s limb difference at our 20-week anomaly scan. It was all going fine, until it ended rather abruptly, with the Sonographer telling us he was “unable to get all the pictures he wanted”. We were told to take a seat in the Waiting Room while he spoke to a more senior staff member. We quickly found ourselves sat in a side room, waiting for someone to come speak to us. The biggest relief in that moment was that we knew our baby had a heartbeat, and what matters more than that; however, that feeling of “what are we about to be told” was lingering. It was explained to us that they weren’t able to fully capture Baby’s right hand. The news softened by a “it may be that Baby simply has it’s fist clenched”, however they wanted to refer us for more detailed scans. Deep down we knew there was something amiss. Unfortunately for us, this was 16:30 on a Friday…
After a weekend of ‘what-ifs’ and ‘why’s’, we were contacted by King’s College London (KCL) on Monday, who wanted to see us the following day. The urgency of it, didn’t help calm our anxiety. KCL looked after us well, and a detailed anomaly scan confirmed Baby had an incomplete right hand.
The staff were compassionate and balanced, explaining next steps clearly whilst we were still taking everything in. They completed a number of scans, and were able to reassure us that there were no other anomalies, and likely to be just ‘one of those things.’
With no other concerns we were discharged back to the care of our local hospital for the rest of the pregnancy. (Adding into the mix Low PAPP-A, Gestational Diabetes & concerns about low growth, we probably had in excess of 30 scans, not once finding out the gender!)
In one scan, Baby’s hand was in a ‘rockstar’ pose; with that their middle name was set: Rocco for a boy, Star for a girl.
All these additional scans, gave us time to process and come to terms with it all. Finding out early, (although now speaking to others we realise not everyone is as fortunate) allowed us time to research and discover some amazing charities. One that shone through was Reach. It was reassuring to find others with a shared experience, and knowing that such groups exist – we were not alone.
After a long pregnancy, Quinn made a quick entrance into the world. During his checks, it was also discovered he had webbing and a short index finger on his left hand. To us, he was perfect. His ‘paw’ – as we had affectionately nick-named it – was as we had imagined, which helped in allowing us to accept the reality.
Fast forward six months, and Quinn is thriving, hitting all his milestones (much earlier than his older brother!), and smiling throughout. Nothing seems to faze him.
Words of advice we’ve heard often on this journey are along the lines of “he’ll adapt”, “he won’t know any different”, “he’ll be just fine”, and as cliché as they sound, it is so true. His limb difference does not bother him in the slightest. For anyone finding themselves at the beginning of this journey; the clichés are true. Don’t stress. They will be just fine.
We are now navigating the appointments with consultants and plastic surgeons, all of whom have said it’s about trying to give Quinn the best possible future – albeit we are confident he will cope just fine with minimal intervention.
Our first consultant appointment, gave us an insight as to what to expect. Our first surgery will be to free Quinn’s web, which will be planned for when he’s around one year old. Further down the line, there are discussions to be had around toe-to-hand surgery; something for which we have found ourselves reaching out to fellow Reach members (WhatsApp groups, Facebook pages) to sense-check our thoughts, and we’ve had many valuable responses.
Having these platforms as a resource is invaluable, and a reassuring reminder that we’re not alone. We have also recently had the pleasure of attending our local face-to-face meet-up, which is also invaluable in helping us share lived experiences.
It will be so nice to be able to navigate our journey with like-minded people, and those who ‘get it’.
Thank you to Reach for allowing us to feel like we are not alone. Quinn’s journey is just beginning.
Incredible things await.
Read it now in Within Reach Magazine Winter 2025!
