We write this as parents of a disabled child, our personal experience of his treatments, and what we have learnt. It is the story of parents fighting for their child to get everything he needs. Also it is a story of how tragedy, a decision to attend a tech conference, and a model train hobby led to a vision. A vision we believed could fundamentally change the way we make orthotics and other custom mobility aids.
We are Naveed and Samiya Parvez. Our son Diamo was born in March 2003, he had a difficult birth due to medical negligence, which led to cerebral palsy. Sadly he passed away in March 2012. Diamo was diagnosed to be quadriplegic and had very little head control; which meant that he required extensive treatment to help him with basic functions such as eating and looking around, this included a multitude of braces and gators.It took a year of persistent badgering to convince his clinical team that he required these aids at all.
When we finally met the excellent Mr Patterson at the Royal London Hospital and his team. It became quickly apparent that Diamo “didn’t fit any pattern”; which meant he required a new type of back brace combined with a hip abductor. They hadn’t had to create something like this before.Once the design had been agreed, Diamo then had to be measured and fitted for the brace. Bear in mind Diamo couldn’t communicate, hated cold things, and wasn’t able to understand what was happening to him.
The process was:-
- The consultant referred us to Cox Ortho
- At Cox Ortho Diamo had to be stripped for the mould to go on his skin
- He was covered in Plaster of Paris to get a mould, this was done first with him lying on his front
- The Plaster of Paris took about 10 minutes to dry, hopefully we’d been able to keep him still enough for the mould to be accurate enough for it to be removed
- This was then repeated with him on his back, which he absolutely detested and would scream throughout the procedure
- Measurements were then taken of his hips and legs
- We would then wait between 4-13 weeks for the brace to be created using moulded plastic and metal
- When it was ready we went for a fitting by which time he had grown and it had to be modified. If we were lucky it was just a quick modification, and if we weren’t it meant we had to go back for multiple adjustments
- The process was trial and error, sometimes the brace would be ever so slightly out leading to sores and marks. For example if the bit under the arm wasn’t cut properly it could bruise him under his armpit. We had to cut strips of sheepskin to put inside the knee abductors to reduce sores
- This would then have to be repeated after 6-9 months after he outgrew it.
Although the process was long and frustrating the results were worth it. With the brace Diamo was able to concentrate better at school as he wasn’t expending so much energy just trying to keep himself upright. We were also able to feed him more easily and he showed more interest in activities.
So much changes when you have a disabled child from the mundane to the fundamental. Everyday items take on extra significance like finding a spoon he liked as they had to have a certain shape and mix of rigidity and flexibility to feed him.
His brace and other orthoses had knock on effects to his other equipment and everyday life:
- The wheelchair had to be adjusted as he had to fit into it with the brace on
- Special seating systems at school and home had to be purchased that could be used with and without his brace
- Car seats were a challenge, eventually he moved to booster seats and lots of pillows for support in the car as he couldn’t use a conventional car seat with the brace on and he would end up falling off the car seat without it
- We had to buy seamless clothes and very fitted clothing to reduce the risk of sores
- The brace had plastic foam on the inside as padding, which meant he overheated in warm weather
- He just about fitted into an economy class seat. Eventually we had to move to business class seats for his comfort
- The brace added 2-4kg to a child who required manual handling throughout the day
An idea that could change everything
2012 will likely go down as when 3D printing really hit the collective consciousness of the world. For us it really started when we saw an article on Wired about a girl that had an exo skeleton 3D printed for her. Suddenly a world of possibilities started to take root in our minds. However it was clear that the technology was still very young and with it being plastic based it wouldn’t be fully suitable for all the uses we thought of including pieces that had to be weight bearing.
In January 2013 Naveed attended Monki Gras which is a yearly technology conference. Chris Thorpe from Jagaree came on stage to talk about model trains. To be quite honest Naveed almost left to go and grab some coffee at this point, what could possibly be interesting about this? However the mention of 3D scanning and printing piqued his interest and he decided to stay (read the whole the thing it is really amazing).
What followed was one of the most incredible moments of his life as many disparate ideas and thoughts suddenly coalesced when Chris showed them a piece of metal. A piece of metal that had been printed as a perfect replica of a piece from a 3D scan of a steam train. Suddenly the realisation sunk in, we can print metal from a 3D scan, a fire had been lit.
That night at dinner further serendipity struck when James Governor (the organiser of Monki Gras) sat opposite Naveed. During dinner Naveed told James that he wanted to be on stage at Monki Gras in 2 years with a prototype of a 3D scanned and printed child’s orthoses.
Within the next hour they had agreed that they would aim to create a prototype the following year.
Our aim is simple but revolutionary.
What if you combined 3D printing + 3D scanning + biomechanical models
What if you could:-
- Take a 3D scan of a child? No more messy plaster and time consuming process that is “mostly right”
- Create a biomechanical model of the child you have scanned
- Design a brace around the biomechanical model of the person so you can see how it will impact them. Perhaps coming up with designs that aren’t possible because they require testing on the person normally
- Prototype an orthotic quickly to check size, fit, and function
- Iterate the orthotic
- Model other equipment using the scans and models such as wheelchairs, seats, gators
The speed, accuracy and holistic approach of making everything fit could change the lives of children and parents everywhere.
The bigger problem
Our experience with our son Diamo has meant that we’ve stumbled into a massive problem in healthcare that isn’t being solved. In the UK there are 2 million people going through the NHS orthotics service, and approximately 100 million people worldwide that need an orthotic.
We have learnt how broad the conditions treated with orthotics are such as cerebral palsy and spina bifida or those that have experienced spinal injuries, a stroke, or side effects from chemotherapy.
Demand is increasing by 4-6% a year due to diabetes, obesity, and people surviving long term conditions for longer. But the experts that create these handmade products are retiring faster than their being trained, meaning a tipping point is coming where the service can only collapse under it’s own weight.
But why stop at orthotics? There are thousands of medical devices and the services around them that have not kept up with the technological developments of the last few years. Could we provide healthcare solutions for all of these as well?
We’re not going to stop making the lives of disabled children and their families better.
So What’s Next?
We are building the first ever patient centered orthotics service right now. But we’re not stopping there. Our aim is that no person anywhere in the world should have to wait more than a week for their medical device. We have some fantastic people and support helping us make this happen, do you want to be one of them?