MOST parents don't look forward to their baby crying, but for one Abertillery couple it was the "best sound in the world".
Little Aiyla Fear was a healthy baby girl throughout most of her mother Lindsay’s pregnancy, but when she was born she wasn’t breathing and was limp due to a lack of oxygen.
Doctors rushed her to a special care baby unit and she spent 18 days in Nevill Hall.
With major organs failing, her parents feared Aiyla wouldn’t make it through the night. But after her sixth day on the ward they were delighted when they heard their daughter strong enough to cry.
Aiyla is now two, although in terms of her development she is closer to a newborn.
Her epilepsy, vision problems and cerebral palsy mean she has not yet mastered key milestones like smiling and sitting unsupported, and can only eat pureed food.
But despite these setbacks her Abertillery parents say she brings them nothing but laughter and they couldn’t imagine life without her.
Mrs Fear, 27, said Aiyla was rushed to hospital after being born at home. “She was presenting as if she had been in a head on car accident. They did a CT and MRI scan and she showed brain damage but they didn’t know how it would affect her.”
Aiyla had two kinks in her umbilical cord which may have caused the problem, she said.
Her big brother Logan wasn’t allowed into the ward where Aiyla slept in an incubator hooked up to tubes.
Now Logan, four, is a protective big brother, although he struggles to understand her condition. Mrs Fear said: “He just thinks she’s a baby at the moment. We have tried to drop hints she’s not like his friend’s little sisters. He still says ‘When she’s four we can go and play football’.”
When Aiyla left hospital her parents thought they had escaped the worst as at her six week check she was presenting as normal. But they realised something was wrong when she didn’t start smiling when she should have and showed stiffening of her limbs.
At nearly nine months old Aiyla was diagnosed her with quadriplegic cerebral palsy, meaning it affects both her arms and legs.
She has between 20 and 30 seizures every day, most lasting between two and five minutes.
Mrs Fear said: “It’s bad for us because we know it’s doing further damage to her brain. They say that’s why she’s not learning anything. She has a seizure and it’s wiped clean.”
Her mum and dad have accepted that Aiyla will always struggle to do the things most children take for granted, like walking or feeding herself.
Doctors think Aiyla is only able to see lights, and she visits a group in Cwmbran for other children with sight problems. She also has physiotherapy on a trampoline which is one of her favourite things to do.
Mrs Fear said: “Obviously it’s a lot to get your head around. Two years ago, I could never have imagined having a severely disabled child, but now I couldn’t imagine life without her. She doesn’t do a lot, but all she ever does is make us laugh.”
The family are now awaiting the results of a new scan to show whether surgery can help Aiyla, or whether they should focus on keeping her comfortable.
They are also raising funds to allow them to buy specialist equipment to support Aiyla and register as a charity and are almost halfway to their initial fundraising target of £6,000.
Visit www.gofundme.com/au3jcg to donate.