A baby has just reached her first birthday –a year after her Langley Mill parents were told she was too ill to live.
Arliya-Leigh Bull was only hours old when a plan was implemented for mum and dad, Laura and Reece, to “take her home to die”.
She was suffering from Hypoxic Ischemic Encephalopathy (HIE), which is a type of brain damage caused by lack of oxygen at birth.
However, Arliya-Leigh has not only survived, she has also turned one, and the birthday was celebrated at Rainbows Hospice for children at Loughborough.
“The doctors are shocked at how well she is doing,” said mum Laura Bagworth, 22. “She just carries on each day.
“However, they still say her life expectancy isn’t great, and I feel like I’m on borrowed time.
“We live each day as if it is 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.”
Laura was anaesthetised during Arliya-Leigh’s traumatic birth. When she came round, she was told her baby was in intensive care and was shown photos of her.
“I demanded they wheeled me to her in my bed, and when I saw her, I just sobbed,” said Laura. “She was covered in wires and tube.
“I had lots of meetings, and a plan was made to get her home as quickly as possible. She basically came home to die.
“The doctors said it would be within weeks. But she just kept proving everyone wrong and getting stronger.”
Arliya-Leigh’s condition means she is tube-fed because she can’t swallow and does not have a gag reflex.
She has frequent seizures and two to three muscle spasms a minute, for which she is on a range of medication.
Both Laura, who also has a five-year-old son and a two-year-old stepson, and Reece, 21, are full of praise for Rainbows.
“We came when Arliya-Leigh was two months old and we loved it,” said Laura. “We feel so supported by all the staff, who help us so much.
“Coming to Rainbows gave me respite. I can go to sleep without having to worry. It is a really big part of our lives now.
“When the time comes for Arliya-Leigh to pass away, I want it to be at Rainbows.”