The parents of Amelia Thompson, from Oswestry, told of their fears after their daughter was born with a serious heart condition and Down's syndrome.
The youngster has had a tough start to life, born weighing just 3lb 10oz, tiny enough to fit in her dad Dave's cupped hands. She spent her first Christmas in intensive care, surviving heart surgery and an erupted stomach.
Her journey isn't over, but happier times have come her way, including starting school and meeting baby brother Alfie, the apple of her eye.
Now Dave and Amelia's mum Charlotte are sharing her story to drum up support for Hope House children's hospices, who have been instrumental in her care.
Charlotte and Dave recalled how shocked they were when a nurse first suggested that they contact the children’s hospice.
“We thought it was because they thought Amelia wasn’t going to make it,” said Charlotte.
Everything was perfect until a routine midwife appointment at 34 weeks flagged up that their unborn baby wasn’t growing as well as she should be.
Dave was working on oil rigs at the time as an electrical inspector, so Charlotte’s mum went with her to see the consultant and have a specialist scan.
“They came in and explained that a heart defect had been picked up and that it can come hand-in-hand with Down’s Syndrome. It was just such a huge shock,” said Charlotte.
She got a message to Dave, who flew home the next day.
Three days later they met with another consultant who asked them whether they wished to continue with the pregnancy.
“I thought ‘He can’t be asking this' but he was,” said Dave. “We said we were still going to have our baby. What would be would be.”
Remembering when Amelia was born, Dave recalled: “We were just so relieved she was here. All the stuff we had been told just went away and you look at your baby and you love your baby. She was just Amelia and not anything else. We were just new parents.”
Amelia was taken to intensive care and a week later it was confirmed that she had a heart condition that would need an operation, and Down’s syndrome.
There began a lengthy stay in different hospitals with the aim of getting Amelia’s weight built up before a cardiac repair operation.
Dave said: “We stayed with her the night before her operation and I did not sleep at all. She was in a little surgery suit and then we were allowed to take her down to her operation. There was a form to sign and it was horrible giving you percentages for survival.”
Charlotte remembered: “She was meant to be gone for about eight hours but it took 10 hours - it was horrendous. We found out after it was because her stomach had erupted and they got a gastro team in and then a respiratory team because her lungs had filled.”
After six weeks Amelia was allowed home, but needed oxygen to breathe. Soon she was back in hospital again and her first Christmas was spent in intensive care.
For Charlotte and Dave life was completely taken over caring for Amelia – for a time they were even living in a camper van in a hospital car park so they could remain close by.
The family were referred to Hope House.
“I thought it was because they thought Amelia wouldn’t make it,” admitted Charlotte. “Because I’d grown up locally I’d always known about Hope House. The nurse at the hospital had worked here and explained it was also for respite care.
“We came for a look around and a stay just after Amelia’s first birthday. We had had to be so careful to keep her away from germs and colds but we felt that Hope House was a safe environment. It was somewhere to come where Amelia could do new things like go swimming, and see other children and just play and do normal things. Jo was one of the first nurses to look after her. "
Amelia still has a hole in her heart and she still has leaking valves, but her medication is keeping things ticking over, and her parents are trying to keep their minds off the prospect of more surgery to enjoy the here and now.
Charlotte said: “If we start thinking about that now we are not going to enjoy the fun times. Because we missed out on so much with her being so poorly, we try and make up for lost time now.”
To support Hope House Children’s Hospices Christmas campaign and support children like Amelia please visit hopehouse.org.uk/amelias-story