A Cardiff mum is raising money so she can spend "crucial" time with her baby daughter who is on life support. Alice Lyden-Thomas, who is almost two years old, has a rare congenital heart defect and has had three open heart surgeries since she was a week old, said her mum Emilia Thomas, 24.
Her 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. In the last year alone she has been admitted 12 times.
On February 16 she became "extremely unwell, blue, and floppy" and was rushed to hospital. She is now in a coma in intensive care in Cardiff and is due to undergo surgery on her heart in Bristol and then another surgery in Cardiff. She is expected remain in hospital for several weeks.
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Emilia, who has three other children aged seven, five and three, is "desperately" fundraising to help cover travel expenses, hotel costs and child care so she can be with her baby. You can donate to the fundraiser here.
Alice was born with hypoplastic left heart syndrome. "It means she will need a lot of surgeries in her life to be able to live," Emilia said. She found out that Alice had a hole in her heart when she was 20 weeks' pregnant and was offered a termination, which she declined.
When Alice was born at 34 weeks Emilia was blue-lighted to a hospital in Bristol because the hospital in Cardiff did not have the medication Alice needed to keep her heart valves open. "The birth was really traumatic because I didn't get to hold her – I just gave her a kiss and she went and I didn't see her for four or five hours afterwards," said Emilia.
"It's been completely, completely different to my other children. I've always said to my mum that I feel a bit like I've missed out on Alice because a lot of other people have been looking after her and I haven't – that's the hardest thing for me."
Alice had her first surgery in Bristol when she weighed just five pounds. A couple of months later she had her second surgery during which her lung collapsed and also had to be operated on. Emilia estimates Alice, who is 21 months old, has spent eight or nine months altogether in hospital.
"[In the last year] she's had RSV, she's had croup, she's had bronchitis, she's had rhinovirus – she's just been really poorly. And she's got really low oxygen levels...so when her oxygen drops she deteriorates and gets worse and that's why she ends up in hospital."
Alice is expected to regularly be in hospital until she's eligible for a heart transplant when she's older. Emilia is her full-time carer and has been trained how to look after her at home such as tube-feeding her and giving her oxygen. Alice's mobility is also "very delayed" as she's got a curved spine and she requires multiple outpatient appointments – including physiotherapy, occupational therapy, and help with her speech and language. "She's lovely and happy at home. We try to teach her as much as we can and encourage her to stand...but she does get really breathless and that will affect her as she gets older," Emilia said.
She said she "didn't know the severity" of Alice's condition before she was born. "I didn't know this was going to happen and how upsetting it would be. I do fear for Alice's life all the time. Even when I'm asleep I won't sleep until she's asleep and I will always wake up and check her breathing but that's just something I've got used to. She gets treated no differently to the other children. I try and make sure she's involved with everything as much as she can be."
Alice's heart is currently "not functioning properly at all" and the family are waiting for test results to come back. "Then we'll get an answer as to why this has happened to her. They said she definitely needs another heart surgery – so that will be her fourth one in two years." Meanwhile doctors are currently working hard to keep Alice "safe and stable".
Asked how long Alice is expected to stay in hospital Emilia said: "From previous experience we've been in hospital from three to four weeks because Alice gets really poorly after surgery. She gets infections or she goes into organ failure so we do stay there a really long time. It's because of how little she is as well – she's got a really complex heart. So they've got to be super-careful with her and her lung is bad."
Emilia has been balancing looking after her other children with visiting Alice in hospital and she and the children's father, Jamie Lyden, 24, have come together as a "team" to get through the ordeal. But with Alice expected to be in hospital for a long time Emilia admitted she is "at a loss" at how to cover costs for travel and childcare –, especially when Alice is in Bristol.
"Jamie has taken loads and loads of time off work to help but there's only so much he can take off work before they give the job to somebody else...I don't really want to put pressure on anybody else to have the children. I'm at a loss because I don't really know what to do," she said.
"I don't work so I only get what I get for the children and it doesn't cover half of the amount that I need to go back and forth to hospital and then arrange childcare for my other three children. I just needed to get the help. [Bristol] is going to be really difficult because we've done that before and that costs so much money for hotel stays and travelling back and fore. It was really hard leaving Alice; it was really hard leaving the other children."
Alice will need to wake up from her coma before her surgeries. "I don't even think that she knows we're there. But we try and see her as much as we can and we talk to her and we sing to her and we make sure that she knows that we're with her every day. It is extremely difficult to be with her when she is the way she is because you can't do anything with them when they're like this – they're just in a bed, they're asleep, and it is scary."
Speaking about the risks of the surgeries Emilia said: "The hardest thing I've ever had to do is sign for all these surgeries – people read the risks out to me that my daughter could die and I feel like I'm signing her life away all the time but I would do absolutely anything to save her, anything in this world to save her life.
"All I've held onto is hope with that baby and it's got me so far and it's worked. I'm not superstitious or anything but Alice has a little teddy that she's had since the nicu (neonatal intensive care unit) and every time she's had that with her she's always had luck...so I keep that with her and I just believe that that saves her throughout everything. And hopefully it will save her this time because she's really poorly at the moment – this is the worst I've seen her.
"She's gone through so, so much – there's only so much a little body can take...I always hope that for her but I think I'm prepared mentally if something was to go a different way. Nobody ever wants to hear that your child could die and you never want to think about it but when you've got a baby with such a horrible condition and the unexpected happens all the time I think you should just have that in the back of your mind that it can happen."
She admitted Alice's condition had "put a massive strain on a lot of people in the family" and said she hoped they can do something as a family when she is better. "We don't do anything as a family anymore – we haven't done for the past probably two years because we haven't got the money, we don't know what's going to happen with the baby. If something happens and we're far away the heart hospital is in Bristol.
"I think we're just petrified to do anything with her but it also impacts the other children because they really want to do stuff with us all and we have to explain to them that we can't because of baby Alice...but we try and do the little things that don't cause Alice any harm.
"Alice will always be a risk to herself – that will always be her life. We try and live normally with her because we can't stress every day – it doesn't help anybody. Since having Alice we've learnt to just appreciate the days a bit more because you don't know when your last day with your children is going to be." You can donate to Emilia's fundraiser here.
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