“I have lived knowing my daughter is going to die before me, and when you tell people what she’s been through, they can’t believe you’re standing there.”
These are the words of Bridget Harpwood, whose 12-year-old daughter Elain was born with a complex heart condition and has been supported by Tŷ Hafan children's hospice in Sully since she was a baby.
Thanks to the hospice, parents like her are able to lead life as normally as possible. But she is keen to smash stereotypes that life in a children's hospice can only ever have a sombre feel. Together with other parents, she had spoken out about what it's really like when you have a child with a life limiting condition, and how making memories and enjoying every moment is at the heart of everything. You can get more health news and other story updates straight to your inbox by subscribing to our newsletters here.
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Her daughter, Elain, was once told that she would not live long enough to become a teenager, but she turned 13 on Wednesday, March 22, and her mum could not be prouder. She is affected by Complex Pulmonary Atresia, VSD and MAPCA, and spent much of the first year of her life critically ill in Bristol Royal Hospital for Children.
In Spring, 2013, following several attempts at trying to fix Elain’s heart, her family were told that nothing more could be done for her. But in 2014 she had a period of relative stability and was given a “partial biventricular repair”, which is a strategy used to manage a variety of forms of complex congenital heart disease.
After this she went from strength to strength. For the first time in her life, she was able to eat independently from her feeding tube and gained weight, attended school full time and was able to enjoy activities such as swimming, horse riding, soft play and family holidays.
Apart from two interventional cardiac catheters in 2016 and 2018, she has not required any further surgery. Although Elain’s future is still uncertain, the family continue to receive support from Tŷ Hafan.
Bridget said: "The hospice has been a big part of this journey for us. Tŷ Hafan is there to help you process the emotions which you need to go through. It is there when you need to talk about the hard stuff, and a place where you can go to when you are overwhelmed but can’t show it, but also so you can also celebrate the good times.
“People have an understanding there. The activities are brilliant, and it just creates this space where you can talk about anything. I often felt guilty for even being happy at times, but when you can be around other people that get it and have somewhere you can talk through the hard things it makes all the difference.
"I know every story is different, especially for parents of bereaved children. But the hospice has been vital to Elain and I."
Another person who knows first hand what the pain of losing a child is like is Stacey Carr, from Barry. "I don't know how to describe it", she explained. "It's not something I have really accepted even now. I still won't admit to myself that he's gone."
Stacey's had seven children with her husband, Stephen. But less than seven years ago, they had to go through the unimaginable when their son, Kiegan, sadly passed away when he was just three and a half years old.
Kiegan developed pneumonia which led to lots of complications and left him profoundly deaf with impaired vision. Two years earlier, at the age of one, Kiegan caught chicken pox on both the inside and outside of his body and had to go on life support in hospital for two weeks.
He managed to come through the other side, but his health was never quite the same. It caused him to have dystopia celebral palsy and uncontrolled movements. But that didn’t stop him and his family from enjoying life together thanks to the help of the hospice.
Stacey said: "We never treated him any differently. He never let anything stop him. Kiegan couldn't sit up and talk, or walk, but we never let that stop him enjoying life and there was nothing other children could do that he couldn't do and we'd always work our way around it so he got to do it as well. He was inspiring. I think it was only ever one time that I've seen him really poorly but nothing would ever phase him."
She added: "We just dealt with things one step at a time and you just get on with it. It's what you've got to do, which is what I've found from meeting other people at the hospice - and you don't know that until it's affected you really.
"We were so young when we had Kiegan so we just got on with it, there was never a time when you're like - how am I going to cope? You have to make the most of the situation. There was a time when he needed feeding every hour and I look back now like, 'how did I do that?' But you do it because it's what you've got to do. "
Eight incredible mums have now come together to raise money in honour of the invaluable memories they have been able to create at Ty Hafan. They have set their sights on conquering Eryri, Cadair Idris and Pen-y-Fan on Sunday, May 7. Despite most of them being self-confessed newbies to mountain walking, anything is possible for these determined parents.
Bridget was the one who came up with the Mums v Mountains challenge. She said: "I feel like part of this fundraiser is about redefining how people perceive the lives of parents of children with life limiting conditions. We're still strong and we will climb those mountains, and we’ve had to face things no-one would ever expect to but I want to show that you can live the life you want to because everyone’s different anyway.”
Paula Langston, head of community fundraising for Tŷ Hafan, said: “I am totally in awe of what every mother who is looking after a child with a life-shortening condition deals with every day as it is one of the hardest things a person can do. The fact that these eight mums have decided to push themselves even further and tackle the three highest peaks in Wales in just 24 hours and all to raise vital funds for Tŷ Hafan is amazing.
“It costs £5.2m a year to provide our care and support services, both in our hospice based in Sully, and in homes and communities across south, west and east Wales and more than 80% comes from the fantastic generosity of the public. I hope that as many people as possible will get right behind our Mums v Mountains and help them to realise their ambition and raise as much money as possible for Tŷ Hafan.
"Join me in wishing them luck on this incredible adventure.”
To support the Mums v Mountains for Tŷ Hafan, you can go visit their JustGiving page, here.
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