A baby who was 'sent home to die' within weeks of being born has just celebrated her first birthday.
Arliya-Leigh Bull has Hypoxic Ischemic Encephalopathy (HIE) – a type of brain damage caused by a lack of oxygen at birth.
She was only a few hours old when her parents were told of plans for her to 'go home to die'.
Defying the odds, the tot celebrated her first birthday last week at the Rainbows Hospice for Children and Young People in Loughborough.
Her mother, Laura Bagworth, 22, told Nottinghamshire Live: "We live each day as the last with her and we celebrate that time making as many memories as we can."
Laura was anesthetised during the birth and, when she came round, was shown photos of her baby and told she was in intensive care.
“I demanded they wheeled me to her in my bed and, when I saw her I just sobbed.
"She was covered in wires and tubes – you name it, she had it,” said Ms Bagworth.
“I had lots of meetings and a plan was made to get her home as quickly as possible. She was basically coming home to die.
"Doctors said I needed to prepare myself but there is no way you can prepare for something like that.
"We brought her home and it felt like we were just waiting. They said it would be within weeks."
Ms Bagworth said: "One of the hardest things was that she didn’t cry until she was five-and-a-half weeks old. Not one sound.
"I spent the whole time begging for her to cry.
"Two days before she came home, she found her voice and it was the best sound.”
Arliya-Leigh’s condition means she is tube-fed as she isn't able to swallow.
She has frequent seizures and two to three muscle spasms a minute, for which she is on a range of medication.
Although her first birthday was a time of joy for her parents, the occasion was tinged with sadness as Arliya-Leigh’s first birthday could be her last.
“The doctors are shocked at how well she is doing,” said Ms Bagworth.
“She just carries on each day. They still say her life expectancy isn’t great. I feel like I am living on borrowed time.
"We live each day as the last with her and we celebrate that time making as many memories as we can.
"To get to a year is something we never thought we would see and it is fantastic.”
Ms Bagworth described the last year as traumatic and was very emotional about her daughter reaching such a significant milestone.
For her birthday, a sensory room was created at their home in Langley Mill, Derbyhsire, with friends and family members buying items for it.
“For us, we just didn’t know what was going to happen,” said Ms Bagworth.
“From one minute to the next, we were, and still are, living in limbo.
"We have been told that all it will take is a bad chest infection or a seizure and she will be taken from us.
"But, for now, we are just going to appreciate every second we have with her.”
For Arliya-Leigh's parents, Rainbows is an 'incredible' place.
“We came to Rainbows when Arliya-Leigh was two months old and we loved it,” said Ms Bagworth.
“It is so good in so many ways. We feel so supported by all of the staff who help us so much.
“Coming to Rainbows gives me a bit of respite. I can go to sleep without having to worry about getting up to give Arliya-Leigh her medication."
She said the hospice was like "coming on holiday", adding: "When the time comes that Arliya-Leigh passes away, I want it to be at Rainbows.”
Jo Sims, head of family support at Rainbows, said: “At Rainbows, we care for more than 450 children and young people with life-limiting illnesses and their families.
"As the East Midlands’ only children’s hospice, over the years we have supported hundreds of families from Nottinghamshire.
"We rely almost entirely on donations and thanks to our supporters, like the Nottinghamshire community, we can continue to open our doors, providing care and creating memories for children like Arliya-Leigh."
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