In June 2019 our family was utterly devastated to discover our 13 year-old daughter was showing late signs of Idiopathic Scoliosis, a rare deformity which causes a severe curvature of the spine. We, like most parents and their children it affects, didn’t know what was happening until too late. To highlight the aggressive nature of this condition, just four weeks earlier Freya was totally free of any deformity, as we’d been on holiday, where she’d spent time around the pool in a swimming costume and bikini. At the time of identifying it, however, her spinal deformity was measured at a staggering 74 degrees!
As a paramedic with a sound knowledge of first aid, I couldn’t understand why I, of all people, wouldn’t have seen it. Surely I’d have been aware of conditions like this? The answer, we learnt, which most parents hear when talking with the amazing consultants who correct these conditions, was that there was absolutely nothing we could have done. Freya had been a pain-free, teenage girl able to wash, dress and clothe herself, all without her parents looking on!
She was lucky to have surgery six months later and, although at the time she’d progressed to over 90 degrees of curvature, she was still able to have the long operation to insert two titanium rods. After a short spell in intensive care, and amazing love and care from the doctors and nursing staff, she was able to come home to convalesce
Sadly, Scoliosis affects 4 in every 1000 children in the UK. To bring home this reality after Freya was diagnosed, we were gobsmacked to find so many of our friends either knew someone who had been diagnosed with the condition, or their own child had been diagnosed!
It’s my intention to conduct an unusual fundraising event to highlight this terrible condition. My reason is simple – I want to help prevent other children and parents going through what my family experienced, and the only way to achieve this is through support, awareness and research. All money raised will be split two ways:
The Scoliosis Association UK, the only UK charity which exists solely to promote research into scoliosis. Their vision is to contribute to discovering the causes of idiopathic scoliosis, and to improve the quality of life for people suffering from it
The Masonic Charitable Foundation, which generously paid for Freya to have the operation. The MCF is one of the largest grant-making charities in the UK, whose aim is to build better lives by enabling opportunities, advancing healthcare, while educatiing and promoting independence
Why will my fundraising be so different and difficult?
I was medically discharged from the Army following injury to my lower right leg. After numerous surgical operations I now find walking extremely difficult and painful, so I intend to walk from the place where Freya was diagnosed (Portland in Dorset) to Southampton General Hospital (Hampshire). This will be a distance of 70.6 miles (113.6km) taking A and B roads, and to make it even harder I intend to complete the journey walking backwards
Literally ‘watching my back’, my eyes and ears throughout the journey will be another veteran, walking normally. Numerous children suffer enormous difficulties as a result of scoliosis, so I want to emphasise this point by making this challenge as difficult as possible!
Though it was my intention to complete this fundraising event in 2020, the COVID-19 virus dictated that I’d be providing medical support throughout 2020-21
Please show your support by following us on the journey, and sponsoring us on our Just Giving teams page
Best wishes and love to you all
Wayne
I’d like to thank the following people and businesses for their support
- Stena Drilling
- Great Western Camping
- The manager and staff of the Village Hotel in Bournemouth
- The manager and staff of the Stagg Inn at Lyndhurst
- Displays UK of Christchurch
What is Scoliosis?
Adolescent idiopathic scoliosis is a change in the shape of the spine during the child’s growth. It results in the spine curving sideways and twisting at the same time. This twisting can pull the ribcage out of position, often leading to a hump on one side of the ribs. When this happens between ages 10 and 18, it is called adolescent idiopathic scoliosis (AIS)
The word idiopathic means there is no known cause. Research continues into the causes of scoliosis but it does seem to run in families. It is not caused by anything the child or parent did, or did not do. AIS affects both girls and boys, but is much more common in girls
The important thing is to make sure that your GP arranges a referral to a specialist unit (within an NHS hospital) that treats scoliosis early on. Diagnosing scoliosis early can make treatment more straightforward
Diagnosis
The most common time for scoliosis to develop is during adolescence. At this time scoliosis can be difficult to spot, as teenagers are often covered up and their parents do not usually see them undressed
A quick forward-bend test can help to check whether a child has scoliosis. The test is very easy to do and can be done by a doctor or parent/guardian. The child will need to uncover their back so that their shoulders and spine can be clearly seen. Ask the child to bend forward from the waist, and to keep their legs and arms straight. You will need to look at the child from behind. If the child has scoliosis you should be able to see a clear bulge on one side of the back, where the ribs are
As well as the forward-bend test, there are some other common signs of scoliosis to look out for. Sometimes one shoulder blade will stick out more than the other, a child might lean a little to one side, or one hip might be higher than the other. The forward-bend test is only an aid to check for scoliosis, and only a medical professional can make a diagnosis
The earlier that scoliosis is diagnosed and treated, the better. If you think that you or your child might have a curvature, you should visit your doctor who can check, and may be able to give you a diagnosis. If your doctor confirms that you have scoliosis, you will need to see a scoliosis specialist. You should ask your doctor to arrange the referral to a specialist centre as soon as possible
What happens next?
Your doctor will be able to refer you or your child to the care of a scoliosis specialist. Sometimes your doctor may not have the most up-to-date list of these specialists. If not, you can contact SAUK. We will let you know where your nearest NHS/private scoliosis specialist centre is, and the names of the specialists
After scoliosis has been spotted, the doctor will refer the patient to a scoliosis specialist. The specialist will need to examine the patient. They will also take X-rays
These X-rays should show the child’s spine from top to bottom, and include some parts of the shoulders and hips. The X-rays allow the specialist to see if the spine has any other problems such as extra, missing, or fused vertebrae (the small bones that make up the spine), or if the spine has developed a curve for no known reason
CT and MRI scans are sometimes done to show more detailed pictures of the spine, and check that there are no problems with the spinal cord
Treatment
Monitoring
The specialist may recommend waiting and keeping an eye on the curvature. A specialist normally checks on the child’s curve every 6-12 months. If your child is growing quickly they might need to be checked more often. The specialist will check to make sure the curve does not increase. If the curve is getting bigger, the specialist might suggest further treatment:
Bracing
The idea is that bracing will slow down the growth of a curve. There are several different kinds of braces for young children and teenagers, and each type is usually made of lightweight plastic. Your child will be able to choose the colour and design. The brace is fitted to the shape of the body, and it has padding and straps to hold it in place
A skilled brace-maker called an orthotist will fit the brace. You might need to visit the orthotist more than once to make sure the brace fits comfortably. Braces are usually worn for at least 18 hours a day. They should be removed only for washing
Not all scoliosis specialists offer bracing as a treatment, because bracing does not always stop the patient from needing surgery later on. Some curves are not suitable for bracing, and your specialist will be able to inform you of this
Surgery
Sometimes a curve continues to grow quickly. It might reach a large size, which may mean that non-surgical treatments are unlikely to work. In this case, a specialist may recommend surgery to correct the curve. This surgery is sometimes called fusion surgery. Every scoliosis is different, and every operation is different. Your specialist will talk to you about what the advice is for your child’s spine
Choosing whether surgery is the right option is a big decision. The decision is always taken on an individual basis after discussion between the parents, the scoliosis specialist and, most importantly, the patient
Teenagers in particular need to be involved in such a major decision so that they feel in control of their treatment, which can help to reduce worry and anxiety
The advice that surgery might be needed can come as a shock for the child and the family. This can make it difficult to think clearly when you are in the consultation room with the specialist. Sometimes unanswered questions come to mind after the consultation. The best thing to do is to write these down, which will help you to remember to discuss them the next time you see the specialist
Families can also call SAUK, as it can sometimes help to talk things through. We can direct you to information and resources that may help. You may also find it useful to talk to members who have gone through surgery, and discuss their experiences
Patients and their families should have as full an understanding as possible of what is involved, both before and after surgery. Being prepared for what will happen can greatly reduce anxiety and stress
Prognosis (outcome)
Techniques for the treatment of AIS have advanced a lot in recent years. How well a treatment works for each patient depends mainly on the size and nature of the curve. Sometimes, when a curve is very large and stiff, the main aim of surgery is to stop the curve from getting bigger. Therefore, the changes to body shape might not be as much as expected. For smaller and more flexible curves the difference might be more noticeable. Most patients are generally pleased with the outcome of surgery
