After 29 operations, the 'sassy' five-year-old hoping for a normal Christmas

Amber started school on schedule this year, after undergoing 29 operations

Leanne Belch has a very simple wish for the festive season this year.

"I’m just hoping that we can get through Christmas without Amber being readmitted to hospital", she says, referring to her five-year-old daughter.

Amber has had to undergo 29 surgeries since birth due to suffering from both spina bifida and hydrocephalus - which builds up fluid in her brain.

Despite spending last Christmas undergoing skull expansion surgery - where doctors created more room in her head to try and ease the painful headaches she suffered from - Amber has this year started primary school as scheduled.

For Leanne and her partner Paul, life has been a "rollercoaster" since Amber was diagnosed with spina bifida while still in the womb.

"I was told 80% of parents who got this diagnosis then terminated the pregnancy because the outcome wasn’t very good at all," she recalls.

"Even though I was only 22 weeks I could feel her moving about inside me and I thought I cannot go through with the termination – it was like she was telling me not to give up on her yet, she still had a chance."

Amber was taken into intensive care as soon as she was born

Leanne, who has two other children, Laila and Emma, decided to go ahead with the birth. But Amber arrived a month ahead of schedule via an emergency caesarean delivery.

Immediately, she was whisked off to intensive care.

"Her spinal cords were in a bubble hanging outside her back and they had to do her first surgery within 48 hours" says Leanne, who lives in East Kilbride.

"They put her spinal cords back in her back and had to close her back up again. She was so fragile. They had actually lost her heartbeat just before the c-section and had been touch and go at the delivery."

After seven days, Amber was undergoing a second surgery - this time to place a shunt in her head to try and drain away the fluid that had been building up.

The shunts have regularly failed since Amber was born, meaning she has endured repeated surgeries try and fit her with one that worked.

For Leanne, 39, what should have been a joyful celebration instead became a whirlwind of emotions.

"I completely broke down in hospital. I was so scared and couldn’t cope – I have another two girls and I had so much mum guilt about leaving them while I was in hospital."

Amber underwent skull expansion surgery in 2023

Leanne told BBC Scotland News that she felt she was left to get on with things by herself, which took a considerable toll on her.

Yet she "turned the corner" when she discovered the Spina Bifida Hydrocephalus Scotland support group, which led her to meet parents of other children with spina bifida and to have access to support workers, who helped her adjust.

"The first thing someone there said to me was ‘congratulations on the birth of your daughter’. She was the first person who had said that to me since Amber was born.

"It just made me really emotional hearing that."

The surgeries have continued to mount up for Amber, although initial concern that she could have brain damage proved unfounded.

However Amber has developed into a girl described by her mum as "a social butterfly", one who is always curious and wanting to know every detail about people she meets. She is also close to big sister Laila, who's "like her second mum".

"Amber is absolutely hilarious," laughs Leanne.

"She’s so cheeky and sassy. You never know what she’ll come out with next."

Amber's big sister Laila is always lookng out for her younger sibling

Last December Amber and her family experienced one of their toughest periods, when her hydrocephalus caused her to suffer painful headaches and vomiting.

Doctors were concerned that the fluid in her brain was reaching such dangerous levels that Amber would start to lose her sight.

That led to the five-year-old undergoing skull expansion surgery, which widened her skull by 2cm all around her head.

The procedure was "traumatic" for both Amber and her mum, as it saw two metal rods placed in her head and then rotated for 10 days.

"During the surgery for the skill expansion, they had to shave her head," recalls Leanne.

"I just burst out crying, as I knew what it would mean. Amber had long hair and was going through enough without having to wake up being bald.

"Whenever she caught her reflection afterwards she would start crying. That was really hard, I found that really tough – she couldn’t look in a mirror for months."

Amber's family have ensured she has had happy moments as well

Yet the past year has brought positives as well. Leanne and Paul discussed holding Amber back a year from starting school as she recovered from the surgery, but she improved quickly after returning home in January this year.

Leanne tried to keep her daughter's spirits up, while Amber took inspiration from a Barbie doll given to her by a family friend - the toy was in a wheelchair while Leaane's friend had removed the hair, letting Amber "see herself" in the toy.

Such positive backing meant that in August Amber was able to start attending Long Calderwood Primary school.

She continues to attend meet-ups organised by Spina Bifida Scotland, where Leanne says she is "beaming with happiness."

The charity's support is part of the reason why Leanne has taken on fund-raising for the charity, who are launching a Christmas appeal this week.

Leanne has her own Christmas plans too, and hopes this year is memorable for the right reasons.

"We’ve booked a trip to Aviemore on Christmas Eve, because last year we were all split up from each other, she says.

"I just want to make this year really special, because I feel you never know what’s in the future."