The mother of a desperately ill baby girl who fought acute liver failure in the last few weeks of her life has paid tribute to her as a "really happy, special little girl". Alice Lyden-Thomas, who was almost two years old, died in her mother's arms in the University Hospital of Wales in Cardiff at 12.03am on April 8 after spending almost two months in hospital.
Alice was born with a rare congenital heart defect called hypoplastic left heart syndrome, which saw her undergo three open heart surgeries in her life time - the first having been conducted when she was just a week old. She was admitted to the University Hospital of Wales in Cardiff in February this year because her oxygen levels were low.
She spent time on life support in intensive care. By March, her condition had improved considerably and there were even discussions about discharging her, said her mum Emilia Thomas, 24, who lives in Ely in Cardiff. But overnight Alice was diagnosed with hepatitis - inflammation of the liver - and she entered acute liver failure.
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Within six days of being transferred to Birmingham on March 18 for specialist liver care, Emilia and Alice's dad Jamie Lyden were given the devastating news Alice had been declined for a transplant. After being transferred back to Cardiff, Alice deteriorated "really badly" - contracting sepsis, jaundice and kidney failure - and was intubated.
Remembering her youngest child, mum-of-four Emilia said Alice was a "cheeky, happy little girl" who had a "beautiful smile" and was "full of life and full of light." "No matter what she was always really, really happy," she said. "She just loved everything about life. I will always remember her singing - Alice would sing all the time. She'd sing 'You Are My Sunshine' and 'Twinkle Twinkle Little Star.
"There are loads of things I will always remember about her, but her singing and how happy she was are probably the main ones. [Her siblings] absolutely adored her. They would always cheer her on and they were always so proud of her when she would do something. The four of them were the best of friends."
Emilia said she "can't describe the pain" of losing her baby. "It has been the most hurtful thing I've ever experienced, and it's the worst atmosphere. We can tell Alice is not here - it's quiet. We want to go and check on her, but we can't check on her anymore. The thing we do in memory of her is we light a candle at midnight and we blow it out when it's three minutes past. But even that makes us really upset."
Alice's funeral will take place on Thursday, April 27 at 10am at Barry Crematorium. She will be taken there in a white horse and carriage which will leave the family home in Ely just before 9am, with her loved ones walking beside her. Everyone is asked to wear yellow to her funeral - a nod to one of her favourite songs, 'You Are My Sunshine.'
"It's bright and happy for the funeral. I didn't want the funeral to be all dark and glum," said Emilia. She added that anyone is welcome to Alice's cortege, funeral service and wake. Children are also welcome to attend the wake, which will take place from 2pm until late in the concert room at the Home Guard in Caerau.
"There were a lot of people who didn't know Alice who followed her story from the day she was born, and even before she was born. And a lot of people took interest in it because there is not as much awareness of congenital heart disease as there should be."
The community has rallied round the family to help cover costs for Alice's funeral and other efforts to honour her. "We've asked for no donations of flowers, but we've asked for donations for a bench to be put in Roath Park. That was Alice's favourite place," said Emilia.
People have made and sold yellow bows and a big fundraising event took place on April 13 at Glamorgan Wanderers rugby club in Caerau that raised £3,302. "It was just amazing. The children absolutely loved it and so much of the community turned up to support us," said Emilia.
Speaking of how Alice's memory will be kept alive, her mum added: "We will always post about her, we will always talk about her, we will never just keep her in the back of our minds. Alice will always be the talk of the day - for our children, for us."
"We will do events in the future so people will remember her and to keep a legacy going for her - because she wasn't a normal baby. She went through a lot, and she fought a lot and she just taught us a lot about life and just to never take it for granted. What she went through I wouldn't wish any child to go through - but she came out stronger every single time.
"Alice fought to be here, and she was a really proud little girl as well. We're going to do anything we can to honour and remember her life. I hope Alice remembers everything we've done for her and I hope she remembers how much we love her."
Some of Alice's ashes will be scattered in Snowdonia, where Alice spent her first and only holiday, which the family were gifted in December 2022 by the Little Ted Foundation. Emilia has urged other bereaved parents or parents with children who have congenital heart disease to "never feel alone."
"There's always help that you can get - whether you're too shy or too afraid to get help, there are lots of different services, there are bereavement services, there is lots of research on CHD [congenital heart disease], there are lots of groups on Facebook. There are lots of things you can do to try and keep your mind at ease."
Alice Lyden-Thomas is survived by her mother Emilia Thomas, her father, Jamie Lyden and her siblings Oliver, 7, Charlotte, 5, and Rosie, 3. You can donate to the fundraiser for Alice here.
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