Whether it’s the first time or fourth time, one of the most exciting parts of any pregnancy is seeing those fuzzy black and white images of your tiny human wriggling about on the screen at your routine antenatal ultrasound appointments.
Along with giving expectant parents a first peep at the real reason behind those butterflies in mummy’s tummy, they also offer a valuable and detailed insight into how the baby is developing.
And while lots of happy, smiling parents-to be leave the clinic feeling relived and reassured that all looks healthy, perhaps elated at finding out the gender of their little prince or princess, there are also those for who no words could ever describe their feeling of complete distress.
Numb. Broken. Resentful. Distraught. Apprehensive. And completely thrown and confused by the words the sonographer just said, the words all those sitting nervously in the waiting area dread to hear. “I’m so sorry. There is something wrong with your baby.” Halfway through their first pregnancy in 2014, Barnsley couple, Adam and Katie Dengel, were watching in apprehension at their 20-week anomaly scan as the sonographer checked all their unborn baby’s major organs for abnormalities, smiling at the little heartbeat fluttering on the screen.
However, within minutes, their bubble burst as panic and concern rippled across the sonographer’s face. As she called for more senior colleagues to double check her findings, the couple were told bluntly that their baby would be born with an underdeveloped forearm.
Amid the confusion and bewilderment, Adam and Katie were ushered into a bereavement room, a black and white leaflet about club hand thrust into their hand and the prospect of a termination offered to them by a consultant who could give no explanation into how this had happened.
The pair chose to pay for a private 3D scan to find out more and discovered the cause was a rare, non-genetic disorder called Amniotic Band Syndrome whereby parts of a developing foetus become entangled in string-like amniotic bands which restricts blood flow, resulting in malformations or defects.
Following their initial shock and concern, Adam and Katie chose to continue with the second half of their pregnancy and knew they would unconditionally love and support their baby through whatever struggles might lie ahead.
Little Thomas Dengel made his long-awaited arrival a few months later, with any worries quickly melting away as Mum and Dad held their beautiful boy for the first time.
Family life over the past four years has been like any other, with Tommy reaching those first milestones in his own unique way and at his own pace, learning to do all the things other children can like dress himself, paint and even climb things.
“It was difficult at first to see your child struggle to pick things up or do simple day-to-day tasks. But Tommy adapted very quickly and nothing has ever stopped him, although he did ask not long ago when his arm would grow back,” dad Adam says.
Since birth, Tommy and his family have been involved with some fantastic charities who help limb-difference children such as the Never Say Never Foundation in America which runs pirate themed camps in Florida for children to try activities and sports they might have never imagined they could.
They were also introduced to artificial limbs by Greg and Toni Lynch from Reading who helped make Tommy’s first assistive device – themed around legendary space ranger, Buzz Lightyear.
“When he first tried it on we’ve never seen a bigger smile on his face. And then when we were invited to the pirate camp in Florida, there were some kids who had no arms at all and had to use cutlery with their feet.
“Both Katie and I knew we wanted to help other parents and families going through similar circumstances in any way we could,” Adam says.
Last March, the couple, both 30, launched the LimbBo Foundation with the help of Adam’s mum Jane and friend Paul who are both trustees.
Inspired by Tommy’s first assistive device, Adam wanted to put a smile on the faces of other limb-difference children with customisable arms in a theme or colour of their choice.
“While looking at starting the foundation, we came across this amazing charity called Team UnLimbited which is basically two guys who have designed one of the finest pieces of engineering I’ve ever seen.
“They created a prototype for a fully functioning assistive device, the basic design of which can kindly be downloaded completely free of charge by anyone to create using a 3D printer.”
After investing in an entry-level 3D printer, costing around £800, Adam watched YouTube tutorials and taught himself how to use it, creating a replacement for Tommy’s beloved Buzz arm which had gotten into a sorry old state from months of constant use by a then toddler.
Unlike NHS standard prothesis which Adam says are more like false-looking doll arms, the Team UnLimbited arm cleverly functions by elastic bands and fishing wire which act as tendons holding all the 3D printed pieces together. “This means that a limb-different child can use their arm to grip, some may have never picked things up before.”
Just over a year later and, as Buzz would say, their custom products have gone to infinity and beyond, helping almost 100 children across the world in the likes of Belgium, New Zealand and America.
To cope with demand, the LimbBo Foundation now owns three 3D printers and Adam and Katie’s garage at their Royston home has been partly transformed into a printing workshop with reams of colourful plastic thread which is spun through the printer to make the many different components of the arm.
Tying in with their motto of ‘limb difference with a smile’ the workshop’s walls are also covered in the beaming grins of the recipients of those arms, each proudly showing off their bright and bold designs personal to them.
From superheroes to football, unicorns to favourite cartoon characters, Adam can adapt the basic template to any colour combination or design of a child’s choice from their own measurements to ensure a perfect fit – until they go through a growth spurt.
“The Unlimbited Arm looks so good that we get responses saying they now feel like the cool kids in school ‘cos everyone is so amazed by the design. We’ve even had hand-written letters sent in from the older kids who can now hold a pen in their hand.”
The arms take around a day to print and assemble and cost just £25 in materials, with Adam putting in the hours of free labour for the pure goodwill of seeing another child happy. They also receive a matching gift or toy to go with their new arm.
Plus, there is no cost to parents, with all LimbBo Foundation products donated by the team. With a book full of orders to complete, Adam can often be found in the workshop in the early hours after finishing his full-time role at Sheffield Arena, swapping large-scale stage production for fiddly finger attachment.
“There’s been many a time Katie has come down to go to work or take the kids to school and I’ve still been sat there finishing orders or trying to fix one of the printers that has decided to go down.”
Along with the Unlimbited Arm, the LimbBo Foundation is the UK’s only producer of custom-built bike cups which again are 3D printed to help adapt bicycles for limb-different children.
“A bike is really hard to steer one-handed and you’ll find kids wobble a lot or can’t balance so I designed these cups that attach to the handle that their ‘little arm’ can fit into. We can also change the brakes to a single mechanism so they can work it using their other arm.”
Providing stabilisers and helmets, the complete LimbBo bikes cost around £300 in total and are kindly delivered for free by local fixture and fittings distributor, BAPP.
Production costs are mainly covered by fundraising and donations such as the British Press Photographers Association in London which this year raised £4,000 from a raffle which has funded most of the current year. They were also the chosen charity for this year’s Barnsley Live!
While their creations help bring a new dimension to these brave kids who have not had the easiest start in life, Adam and Katie also wanted to give the families around them better support than they received in the early stages of diagnosis.
They organise regular adventure days across the country, from arena shows to trips to soft play areas, where limb-difference families can meet up, the kids can play and the parents can chat and realise they are not alone.
With the help of ex-teacher Jane, they have also written a book for limb-different children about acceptance with the main character modelled on Tommy which was illustrated by local Y10 pupils. There are also plans for a comic book line.
Adam and Katie are also working with the guys at Team Unlimbited to deliver more in-hospital support and more modern, factual and colourful pamphlets for parents facing a similar situation to themselves.
Thanks to their unrivalled commitment to limb-difference children across the world, the LimbBo Foundation was recently awarded a Proud of Barnsley Award for Exceptional Achievement.
As for family life, Tommy, who turns five on 1st August, is now at school and has started swimming lessons. He is also a loving big brother to sister Layla, with the siblings alternating between hugging and wrestling as we meet the family at their home.
Bubbly and cheeky with a bright smile, Tommy is a courageous little boy who doesn’t let anything stand in his way – especially not building LEGO which he was busy doing with mum Katie when we visited.
“When he first started showing an interest in LEGO we thought he’d struggle and he did get upset a couple of times but now he builds a new set in no time – ironically without the help of his assistive device which he really doesn’t like wearing these days.”
As he grows up, Tommy would love to be a fireman, footballer or a drummer like Def Leppard’s Rick Allen and asked his parents for his first drum kit last Christmas.
“I was wracking my brains on Christmas Eve for a solution to Tommy holding the drumstick and I ended up somehow designing a 3D printed adapter which is the first of its kind. We’ve also designed the camera buddy which helps left-handed limb different children use a right-sided camera shutter.
“For us, it’s just about thinking outside of the box to let these kids have as normal a life as possible.”