Mia Brown (15), from Lisburn, faced a lengthy wait for NHS surgery to correct her scoliosis — until her mother discovered a different, albeit expensive, option. Ahead of a documentary on Tuesday charting her journey to Turkey for the procedure, Mia’s mum Jo talks to Stephanie Bell
A Co Antrim mum's battle to raise the funds to pay for spinal surgery in Turkey for her teenage daughter who has scoliosis is to be broadcast nationally tonight in a special one-off documentary.
Jo Brown faced a race against time to raise £35,000 last year to give 15-year-old daughter Mia the best chance of helping her severe curvature of the spine.
Mum-of-four Jo (40), from Lisburn, took the drastic step to bring Mia to another country for surgery because of lengthy NHS waiting lists and because the operation in Turkey is less invasive.
Channel 4 followed the mum and daughter throughout their fundraising journey from last July until Mia underwent her operation in February of this year.
Jo and Mia are one of two families to feature in the heart-wrenching documentary Save My Child, which also tells the story of the family of a young English boy with cerebral palsy.
The programme aims to show the strength of so many young people today and the lengths their parents will go to in order to give their children the best chance of a better, more healthy life and a successful recovery.
That was certainly Jo's aim when she learned of the surgery in Turkey.
She explains how she at first battled to get her daughter diagnosed after she suspected Mia had scoliosis when she was just eight.
Jo says: "My father's sister had scoliosis as a child so I knew the symptoms and although it usually isn't picked up until the early teens, I saw the signs when Mia was eight.
"Her waist had gone in at one side which I knew to be a sign but it was a battle and took three years to get her diagnosed.
"At one stage the doctor even suggested she had one leg longer than the other.
"It wasn't until we took her privately to see a consultant when she was 11 and got an X-ray done, that it was confirmed."
Scoliosis is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty.
While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, in most cases the cause is unknown.
About 3% of adolescents have scoliosis.
Most cases are mild, but some spine deformities continue to get more severe as children grow.
Severe scoliosis can be disabling. An especially severe spinal curve can reduce the amount of space within the chest, making it difficult for the lungs to function properly.
Some children have mild scoliosis and need no treatment but Mia's condition was severe and it was apparent quite early that she would need surgery.
She also had to wear a body brace 23 hours a day which restricted her ability to breathe and eat.
Jo, a hairdresser at A1 Salon in Lurgan who is married to Paul (44), a gardener, has three other children, Ella (13), Harry (10) and Noah (6).
As their eldest daughter embarked on her first year of GCSEs at Lisnagarvey High School, Jo and Paul were desperate to ensure that she was given the best chance to lead a normal life.
Jo says: "You could see the escalation in the curve of her spine and it was really getting quite bad. When it reaches 30 degrees they get a brace.
"Mia had to wear one for 18 months to try and stop the progression of the curve.
"It was horrific and by far the hardest part of all. It was like a corset, it was so rigid and tight, and it was made of hard plastic and went from her neck to her pelvis.
"She couldn't eat property with it on or sleep in it and she couldn't take deep breaths.
"She couldn't wear normal clothes and her 20-inch waist was 40 inches with the brace on.
"It was very bulky and she became very good at hiding it.
"Luckily she had to wear a blazer to school which helped and she mostly wore baggy clothes.
"It was really hard for her and pretty horrendous."
Even with the brace it was apparent that Mia's condition was getting worse.
Her shoulder had dropped, making her appear to be slumped over.
Desperate to learn more, Jo went online and found amazing support groups in Northern Ireland where she heard about the new surgery in Turkey.
She explains: "There is great support here from other parents and one group in particular, Megan's Wish, was brilliant.
"They told me about the surgery in Istanbul and by pure coincidence shortly after that the consultants were coming over to Northern Ireland for a conference and we got to talk to them and arranged that Mia would have the surgery there.
"It's a much less invasive surgery. The operation here would have involved opening her up from the neck to her bottom and inserting two metal rods in the spine with which would have left her with no flexibility.
"The procedure in Turkey is keyhole and she had six incisions in her side - the biggest was an inch and the others were about half an inch.
"They put in screws and a cord which they pull tight and that is what keeps the spine in place and patients retain their flexibility.
"The surgery here requires months of recovery whereas in Turkey there are just two weeks recovery."
For Jo it was a no-brainer - the only stumbling block was the cost of £35,000.
In July 2018 she set up a JustGiving page and family and friends launched themselves into fundraising activities.
As one of the initiatives to raise money for Mia's surgery, Jo organised a 'Sundays Supper Cook Off' hosted by local chef Stephen Jeffers at his cookery school with celebrity judge Saoirse-Monica Jackson from Derry Girls.
By Christmas they had reached their target and were able to book the surgery for February.
Jo says: "It was a bit daunting having to raise so much money and people were amazing with how they supported us.
"At the time Mia was miserable and we were miserable and not sleeping and it was heartbreaking.
"Other families in the support groups really encouraged us and it was amazing how the money started to come in.
"Mia had kept it secret up until then and hid it from even her closest friends, so it was a big deal for her launching the appeal as it meant going public.
"She handled it really well and was happy to talk about it and got such a good response that in the end it was a really amazing experience for her and all of us and she made a lot of new friends out of it.
"We were surprised just how many people, even in our own community, whose child also has scoliosis and we heard of so many who had been to Turkey for the surgery."
The appeal was launched in July and in September Mia had an appointment with a consultant at Musgrave Park Hospital and was told she would need surgery and that the waiting list here was a year.
Jo says: "She was put on the waiting list while we continued to fundraise and thankfully by December we had what we needed and were able to book her surgery."
While the surgery was straightforward and Mia's recovery amazingly quick, pre-operation tests showed just how much the scoliosis was progressing in her body.
Her mum says: "The pre-op tests were really intensive and showed that she had just 70% lung function as her spine was pressing on her lungs and also it was affecting her heart, neither of which was picked up here.
"She was in surgery for 10 hours and it was a very long wait until she was brought out at 2am and taken to intensive care.
"She was only in intensive care for around 10 hours and then brought to a main ward."
Mia was able to return home just a few days later and after a two-week recovery was able to start a phased return to school.
For Jo it was the end of a nightmare as she watched her daughter return to a normal quality of life.
She says: "She is a completely different child now to this time last year when she was just miserable.
"It is amazing how quickly you forget the drama of it all but was a very tough road for Mia and for us.
"I would urge any parent who has a child with scoliosis to join the local support groups online as they are amazing and also to do their homework about the options available."
Throughout it all Mia, Jo and the family had a Channel 4 camera crew charting their progress as they raised funds and as Mia came though her operation abroad.
Jo adds: "Mia wanted to do it more than me and we are looking forward to seeing it on TV and I just hope it encourages other families."
Save My Child airs on Channel 4 on Tuesday at 8pm
Scoliosis, where the spine twists and curves to the side, can affect people of any age, from babies to adults, but most often starts in children aged 10 to 15.
Scoliosis doesn't normally improve without treatment, but it isn't usually a sign of anything serious. Treatment is not always needed if it's mild.
Scoliosis symptoms include:
A visibly curved spine
Leaning to one side
One shoulder or hip sticking out
The ribs sticking out on one side
Clothes not fitting well
Support groups include the Scoliosis Association UK (www.sauk.org.uk)