The heartbroken parents of a desperately ill little girl unable to undergo a liver transplant say they are "not ready to let her go" and are "still holding on to that tiny bit of hope that's left". Alice Lyden-Thomas, who is almost two years old, has a rare congenital heart defect, called Hypoplastic Left Heart Syndrome.
She was admitted to the University Hospital of Wales in Cardiff in February because her oxygen levels were low and she spent time on life support in intensive care. It was hoped she could undergo surgery on her heart, which would have been the fourth open heart surgery she's had in her lifetime. You can donate to a fundraiser for Alice here.
By March, Alice's condition had improved considerably and there were even discussions about discharging her, said her mum, Emilia Thomas, 24, who lives in Cardiff. But overnight Alice was diagnosed with hepatitis - inflammation of the liver - and she entered acute liver failure.
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She was transferred to Birmingham on March 18 for specialist liver care and doctors conducted an assessment to determine whether Alice was eligible for a liver transplant. Within six days Emilia and Alice's dad Jamie Lyden were given the devastating news Alice had been declined for a transplant.
"It's awful. We went to Birmingham to try and get her help. And they have very valid reasons why they can't give her the liver transplant - it just wouldn't work," said Emilia. "We kind of knew that anyway, before she got declined, but we just had a tiny bit of hope that she would be eligible, so that was difficult."
Explaining the reasons Alice was deemed not eligible for a transplant, Emilia added: "If they gave her a new organ, her heart would attack it. And if they did do the transplant, Alice could also die during surgery. It's a massive, massive surgery for a poorly baby to take on."
Alice was transferred back to Cardiff on Sunday, March 26, and in a couple of days she "really badly deteriorated". "We got a phone call to say: 'Alice has stopped breathing, we need to intubate her. She is very, very sick,'" said Emilia.
Alice has also now got sepsis and jaundice and her kidneys have started failing. She is on breathing and oxygen support and has been sedated. "We think she's going to go soon. She's very, very, very poorly and she's not doing hardly anything for herself anymore. The consultant said that Alice has not turned a corner...I said to him, 'Do we need to be concerned now?' and he said: 'Yeah, I'm very concerned.'"
Doctors carried out a bone marrow aspiration - a procedure whereby a small sample of bone marrow is removed - on Alice on Wednesday as a last resort to help her. "That's the last test they can do for her. If that comes back with nothing, they've exceeded all options and all Alice's white blood cells are now gone - she has none in her body...Any infections that come to Alice are going to really harm her because she's got no protection left in her body."
They hope the results of the test will finally solve what is happening to Alice, explained Emilia. "They can't find what's doing this to her. They've done as much as they can and she's been between two different hospitals. She's had over 100 blood tests and they can't find out what's wrong.
"Alice is a very, very poorly little girl - that was [the doctors'] exact words...there is no reversing this, she's gone too far and she's very sick. But they need to try [to treat her] and we consented to give Alice every chance that she's ever been given.
"And if this is the last one, we were really happy to give her that. And if there are no results, then there's not much else left to do. We're still holding on for her. We're still holding onto that tiny bit of hope that's left."
Emilia, who has three other children aged seven, five and three, said the family don't know how much longer they have left with the Alice. She and Jamie are currently visiting Alice in hospital up to four times a day.
"We're just going to try to be with her as much as we can. We're not ready to let her go...We've been a long time without her. It is putting a lot of strain on my other children as well. They're struggling in school...they just miss her loads. We all do. Even though I see her every day, I miss her as Alice, and it's really difficult."
She continued: "We're sticking together. We're talking all the time about things. Anything that is on our mind, we're letting out because that's important. But we're just not ready to let her go." Alice's heart condition means she has low oxygen levels and is susceptible to infections which leave her "really poorly" and in hospital for weeks at a time.
"She's not been a baby. She's spent more time in hospital than she's been at home," said Emilia. "She was just getting there with us teaching her how to bum shuffle, clapping, find out where her body parts are - and now I just don't want all of that to be taken away...she hasn't even taken her first steps."
While Emilia and Jamie are holding onto hope for their daughter's "miraculous recovery", Emilia said she has "fought and she needs to rest". She continued: "And if that means that we lose her, she'd be peaceful and she'd not be in any pain. We've seen her every day just go downhill, but yesterday [Wednesday] when we saw her was the worst."
The mum-of-three said she "can't describe in words" how it feels to see her baby so unwell and said it was "choking". She said: "You're watching somebody try to save your baby and I want to be the one to do that. I want to take away all this pain. I've said that if I could take all of her pain and take everything wrong with her and put it on me, I would. No child should ever go through these things: they should live, they should run, walk, go to school...children are the most precious things to me. They're so innocent and and they never deserve anything bad to happen to them.
"Alice deserves a life, after everything she's gone through. She deserves to be a happy, thriving baby. The world just had other plans for her. I've never lost anybody in my life. I've never lost a family member. So I don't know what to do...my child is the first family member of mine that I might lose and that hurts. That just rips my heart."
Emilia also wants to warn parents about underestimating their child's illness. "We took Alice into hospital for low oxygen and this is what has happened in the past two months. I just warn others - whether you think it's a cold that doesn't need to go to the doctors, just take them anyway - because you'll never live with yourself if something happens.
"Whether it be the smallest condition or the biggest condition, their lives can flip in a second and that's what's happened with our baby. She's got congenital heart disease and we were prepared for congenital heart disease, but everything else that came with it has been the hardest thing and we never prepared for it. I don't want anyone else to go through this." You can donate to the fundraiser for Alice here.
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