Five-Year-Old, After 29 Surgeries, Wishes for an Uninterrupted Christmas

Leanne Belch’s primary desire for the upcoming festive period is straightforward. “I’m just hoping that we can get through Christmas without Amber being readmitted to hospital,” she states, speaking about her five-year-old daughter. Since birth, Amber has undergone 29 surgical procedures because of spina bifida and hydrocephalus, a condition causing fluid accumulation in her brain. Although she spent the previous Christmas having skull expansion surgery—a procedure where medical professionals enlarged her cranial space to alleviate severe headaches—Amber commenced primary school as planned this year. Leanne and her partner Paul describe their lives as a “rollercoaster” since Amber’s spina bifida diagnosis during Leanne’s pregnancy. Leanne remembers, “I was told 80% of parents who got this diagnosis then terminated the pregnancy because the outcome wasn’t very good at all.” She continued, “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.” Leanne, mother to two other daughters, Laila and Emma, chose to proceed with the pregnancy. Amber was born a month prematurely through an emergency caesarean delivery and was immediately transferred to intensive care. Leanne, residing in East Kilbride, stated, “Her spinal cords were in a bubble hanging outside her back and they had to do her first surgery within 48 hours.” She added, “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.” Seven days later, Amber underwent a second surgical procedure to insert a shunt in her head, intended to drain the accumulating fluid. Since her birth, these shunts have frequently malfunctioned, necessitating numerous additional surgeries to install a functional one. For Leanne, 39, this period, which should have been a joyous occasion, instead became an emotional ordeal. “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.” Leanne informed BBC Scotland News that she felt isolated in managing her situation, which significantly impacted her well-being. However, she “turned the corner” upon finding the Spina Bifida Hydrocephalus Scotland support group. This connection allowed her to meet other parents of children with spina bifida and gain access to support workers who assisted her in adapting. “The first thing someone there said to me was ‘congratulations on the birth of your daughter’,” Leanne recounted. “She was the first person who had said that to me since Amber was born.” She added, “It just made me really emotional hearing that.” Amber has continued to undergo an increasing number of surgeries, though initial fears of potential brain damage were ultimately disproven. Nevertheless, Amber has grown into a child her mother characterizes as “a social butterfly,” consistently curious and eager to learn every detail about individuals she encounters. She also shares a close bond with her older sister Laila, who is “like her second mum.” Leanne remarked, “Amber is absolutely hilarious.” She continued, “She’s so cheeky and sassy. You never know what she’ll come out with next.” Last December, Amber and her family faced one of their most challenging times when her hydrocephalus led to severe headaches and vomiting. Medical professionals were concerned that the fluid levels in her brain had become dangerously high, potentially causing Amber to lose her vision. This situation necessitated the five-year-old undergoing skull expansion surgery, which increased her skull’s circumference by 2cm. The operation was described as “traumatic” for both Amber and her mother, involving the insertion of two metal rods into her head that were then rotated over a 10-day period. Leanne recalled, “During the surgery for the skill expansion, they had to shave her head.” She explained, “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.” Leanne added, “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.” Despite these challenges, the past year has also included positive developments. Leanne and Paul considered delaying Amber’s school start by a year during her recovery from surgery, but she showed rapid improvement after returning home in January of this year. Leanne endeavored to maintain her daughter’s morale, while Amber found inspiration in a Barbie doll gifted by a family friend. The doll was in a wheelchair, and the friend had removed its hair, allowing Amber to “see herself” in the toy. This encouraging support enabled Amber to begin attending Long Calderwood Primary school in August. Amber regularly participates in gatherings arranged by Spina Bifida Scotland, where Leanne observes her “beaming with happiness.” The charity’s assistance is a contributing factor to Leanne’s decision to undertake fundraising for the organization, which is initiating a Christmas appeal this week. Leanne also has personal Christmas arrangements, hoping this year will be memorable for positive reasons. “We’ve booked a trip to Aviemore on Christmas Eve, because last year we were all split up from each other,” she stated. “I just want to make this year really special, because I feel you never know what’s in the future.”