23 December 2023 , 16:11
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With husky rides, snow angels and a present from Santa himself, a magical trip to Lapland is surely on every child’s Christmas list.
For six-year-old Nancy and Florence Limb, it was an extremely well deserved treat. The twins from Holbeach in Lincolnshire have a special bond that’s seen them through more than their share of tough times.
Due to Nancy’s treatment for a rare heart condition, the girls’ first Christmas was overshadowed by recovery from Nancy’s first open heart surgery in 2017, while another was blighted by increasing health problems that required a second big operation when she was four.
But this year’s festive season has been very different, as the girls and their parents Kayla and Rick, were whisked off to Lapland by the When You Wish Upon A Star charity for sing-songs, sleigh rides and sweeties with celebrities, including England footballer Jill Scott, Coronation Street actress Sue Cleaver, who plays Eileen on the cobbles, and Emmerdale’s Ash Palmisciano, aka Matty.
For Kayla, 44, and Rick, 47, seeing the girls sharing such a special experience after a challenging six years was a dream come true. When they got together, Kayla was already mum to Niamh and Aoife, now 21 and 14, while Rick was dad to Belle and Jacob, now 14 and 12. A baby, they decided, would perfectly complete their blended family and when they married in 2016, there was some very special news to announce – they were expecting twins.
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The twins shortly after they were born (DAILY MIRROR)
Mum Kayla with baby Nancy (DAILY MIRROR)“The excitement was crazy!” laughs Kayla. “The whole family went to the 20-week scan. We felt like we were all pregnant, it was just me who was growing them.” During the scan, the sonographer was unable to see the separation of the chambers of one twin’s heart. “But it could have been the way the babies were positioned,” says Kayla.
A consultant said at a follow-up scan that both babies were doing well and there was no way to tell for sure if one had a heart condition until they were born. But by 35 weeks, one twin’s growth had slowed and Kayla was induced on Good Friday 2017. “I wasn’t worried, but I was keen to get her out and see what was wrong,” she recalls.
At first, all seemed well. “Nancy came out pink, hand first like a superhero.” But a neonatal nurse picked up a heart murmur. At 48 hours old, Nancy was taken with Rick by ambulance to Leicester for an echocardiogram while Kayla stayed on the maternity ward with Florence.
“I suddenly noticed a lot of movement on the ward, midwives hovering around, then my phone rang. It was one the consultants at Leicester, Dr Skinner, and all I could hear was Rick crying in the background.”
Dr Skinner explained that Nancy had a rare heart condition called Tetralogy of Fallot comprising several defects – a hole between the left and right ventricle, a narrowing of the pulmonary valve, thickened muscle of the right ventricle and an overriding aorta, where it isn’t in the usual position.
Nancy would require open heart surgery, but first she needed to go home and put on weight. “The doctors said, ‘Do you feel comfortable doing this?’.” Rick, meanwhile, was struggling. “He was very emotional, he was obviously worried, but I shut it all out.”
Brave Nancy has her second heart op (DAILY MIRROR)
Nancy and Florence are best pals (DAILY MIRROR)Seven months later, Nancy hit her goal weight. “Then everything flipped on its head,” remembers Kayla. “I was suddenly like, ‘I can’t do this, I want to run away with her’. Rick was the rational one, he pulled me through it. It’s been a rollercoaster like that, we’ve always taken it in turns.”
Back at Glenfield Hospital in November, Nancy underwent an eight-hour procedure to repair four defects. Muscle mass was shaved off, the overriding aorta moved and patched with cow skin, and a fix made to the chambers where blue and red blood mix.
The first 24 hours after surgery were tough. “I work on a children’s ward at a local hospital but I’ve never known anything like it,” says Kayla. “There was a nurse called Guy at the end of Nancy’s bed constantly, juggling medication, heat, cooling blankets, socks and mittens; he just did not stop. I had no idea she was quite poorly at one point – he didn’t show it, he just said, ‘We’ve got this, it’s fine.’ He’s one of the people I’ll remember forever.”
Incredibly, seven days later, Nancy returned home. “We thought, ‘We’ve had our scares, now let’s just enjoy life’,” says Kayla. But in 2020 at a routine check-up, it was discovered that the muscle mass had built up again and more open heart surgery was required. Now a lively four year old, Nancy understood far more.
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“Nancy is the heart of this family,” says Kayla. “She’s such a clown, her presence is so big. And it was absolutely horrendous. She screamed when they were taking her off me. Afterwards, she could talk and tell me she was in pain, which is something you never want to hear.”
The six-hour op was a success. “She woke up wanting a cup of tea and I said, ‘You can have as many cups of tea as you want’,” recalls Kayla. The recovery was another rough ride, with Nancy hooked up to machines and fed through a nasogastric tube for a week, which she hated.
“She still talks about the ‘nasty tube’ and has had counselling. She had a lot of night terrors afterwards. If Florence ever won’t eat her dinner, Nancy tells her, ‘You’ll have a tube up your nose!’.’
Nancy’s greatest supporter is twin Florence. “Don’t get me wrong, they bicker, but they’re the best of friends. The school separated them into different classes and it was meltdown central, so they had to swap them back.
“At hospital appointments, it’s Florence doing the hand-holding, I get demoted and told to sit down. Nancy used to be embarrassed about her scar but if anyone comments on it Florence says, ‘It’s her hero scratch. You haven’t got one because you’re not a hero’.”
The family is under no illusions that the future holds challenges. “It’s a critical illness, so Nancy will need lifelong care. Hopefully we’ll get to teenage years before she needs a valve replacement. The next surgery may be via the groin instead of open heart and big advances are being made all the time.
“Nancy is gymnastics mad and goes swimming. It petrifies me, I put her in a wetsuit because she gets so cold, but she’s not letting it hold her back.
“There’s lots of hope but there is that fear as well. As the children get older and understand more, that fear grows with them, which is quite sad, really. So we do the only thing we can and live our lives to the fullest.”
Going to Lapland will be an experience the family never forgets. “There were snowmobiles, reindeer rides and sledging. The girls have never seen proper snow before so they were mesmerised – and meeting Santa was a highlight, as was the husky ride, which absolutely blew our minds.
“I contacted the charity after we got home to say, ‘If times are bad in the future, we’ll think of these memories and we will definitely smile’. We were so blessed to have been able to go – though the girls both want real huskies now!”
- This year was the 30th year When You Wish Upon a Star has taken children living with a life-threatening illness and their families to Lapland. To donate and find out more about their work, visit whenyouwishuponastar.org.uk