25 January 2023
Flora was diagnosed with Spina Bifida when her mother had a scan at 38 weeks. Georgina recalls: “The consultant said initially that the baby could have 65% brain damage and suggested termination.”
Spina Bifida is a neural tube defect. The neural tube develops to form the spine and nervous system. If it doesn’t form correctly in the first few weeks of pregnancy damage to the spinal cord can occur, causing neurological dysfunctions, such as lower-limb paralysis, sensory impairment and hydrocephalus (build-up of fluid in the brain).
Following Flora’s birth, it was clear that she did indeed have limited lower limb movement and sensation. Georgina searched the internet for possible ways of improving the prognosis for Flora and found Gerti Motavalli, an American physical therapist who has pioneered Spinal Electrical Stimulation therapy for children with Spina Bifida. The therapy can be used by parents on their child safely at home and Georgina has become a vigorous advocate for it as she witnessed significant improvements to Flora’s circulation, sensation and function in her legs.
Flora was prescribed AFOs by the NHS to support Flora’s legs though it is fair to say that Georgina and SB specialist Gerti were not impressed by the fit of the AFOs provided: “Flora didn’t have enough support, her feet were sliding around in them.” As ever, Georgina searched for an alternative and found a recommendation for LOC from a fellow mum on Instagram.
Flora was first assessed by Connor Mumford, one of LOC’s clinicians on 16th June. As Georgina remarked: “The contrast in service is quite marked, LOC has a Gait Laboratory, unlike NHS provision, and they don’t need to bother with casting as all measurements are scanned by their own App on an Iphone. The first assessment was incredibly thorough.” Although Georgina and Gerti had initially wanted Flora to be prescribed a KAFO, Connor suggested that a better-fitting pair of AFOs would be more appropriate. In addition, Connor prescribed adapted footwear. This is almost a point of principle for LOC as incorrect footwear can nullify the effectiveness of the orthosis prescribed.
At the fitting appointment, Georgina immediately noticed the difference in the design of the AFOs: “They were much higher up the leg, giving much more support and they were moulded further around her lower legs and feet. And most importantly for me was Flora’s reaction, there was an immediate improvement, she gained so much confidence in her ability to walk. Connor and the team have been outstanding and given Flora so much more independence. The service provided is excellent with the critical differences being the gait analysis that leads to a very specific, bespoke AFO design and the frequent trouble shooting reviews provided.”
You can follow Flora and Georgina’s journey on Instagram @spinabifidanaturally.
An AFO is an Ankle Foot Orthosis which as the name would suggest encompasses the ankle and foot. The objective is to control the position and movement of the ankle. AFOs are used to support weak limbs; they can also be used to immobilise the ankle and lower leg to correct foot drop. When set up correctly they can also have a great influence on the knee and hip joints. They are the most commonly used Orthoses.
A patient’s comfort in their AFO is vital for compliance with the prescribed wearing regime.
So there are a number of steps the orthotist should take to ensure a comfortable fit: the patient’s heel should fit fully into the heel cup without excess space, the contours of the plantar surface of the AFO should match the patient’s foot, for children there needs to be up to half an inch growth room in the toe shelf length. At LOC we use our Gait Laboratories at our Kingston and Manchester clinics to fine-tune our bespoke orthotics.
A GRAFO is used to control instabilities in the lower limb by maintaining proper alignment of limbs and controlling their motion. It reaches around to the front of the knee extending down to the ankle. It works by altering a patient’s limb presentation to displace load and impact as well as offering further control to the knee.
The most flexible type of AFO is a Dynamic Ankle Foot Orthosis (DAFO). It is thin and provides flexible support to the foot and ankle.
We have the following facilities and amenities at our Kingston Upon Thames location:
We also have the Gait Laboratory for orthotics patients and Onsite Manufacturing for speedy turnarounds and adjustments whilst you wait.
Working with LOC and Elaine has been a great experience – they really take the time to look at your child and understand their individual challenges and needs. For parents who are in the same position that we were, I would say do your research – see what clinics are available near you and what the costs are, but my feeling is it’s worth every penny.
After 10 years of daily physiotherapy and swimming, not to mention SDR, hamstring and tendon lengthening, we have finally achieved independent walking – it was a mother’s day gift that would take some beating.
LOC’s video vector technology measures exactly where Austin’s weight is being distributed, how his hips are moving and how his legs are moving. It’s those insights that have made his new AFOs so effective. Even within a few days, LOC’s splints have had more impact on his independence of movement than anything else we have done.
Since his new orthoses, his change has been remarkable. He is more mobile and can walk independently. Jason is now walking indoors and outdoors and is unrestricted. He is now properly enjoying the summer sunshine for the first time in a few years with no complaints of pain.
It has been a breath of fresh air – LOC’s ability to accommodate Sophie’s circumstances and manufacture her orthotics so quickly has taken a huge amount of potential stress away. Alan talks to Sophie as well - she looks forward to seeing him. He has even been able to fulfil her request to have her SMOs decorated with unicorns! It makes her feel special and much happier about wearing them.
I can now go a mile without having to stop, so it is a lot better and I’m walking in a regular pattern now. The orthotic fits perfectly because LOC took proper mouldings and photographs; they were very thorough.