A Belfast grandmother has spoken about her seven-month-old granddaughter's struggle with brain damage and other complex needs.
Baby Ariah was born on September 18, 2021, and due to complications during her birth, the family were told to "prepare for the worst" as she initially wasn't breathing.
She was diagnosed with Neo-Natal Hypoxic Ischemic Encephalopathy - a type of brain damage due to a lack of oxygen - as well as cerebral palsy, dystonia, epilepsy and other complex needs.
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Ariah has spent the first seven months of her life in hospital and has been unable to meet many members of her family. In that time, she has also dealt with coronavirus and two bouts of pneumonia.
Her grandmother, Karolyn McNeice, told Belfast Live the extent of what Ariah has been through so far.
"On 18th September, I went to my daughter's house at around 8.30am as she rang me saying she thought she was in labour, she was in quite a bit of pain," Karolyn explained.
"When Gena went into labour with her first baby she was already in hospital, but she didn't feel any contractions or labour pains.
"I took her to my house to keep an eye on her. At 10.30am, she went for a bath then at 11.30 she got out to go to the toilet and her waters broke. I phoned the hospital and they advised me to ring an ambulance. Everything just seemed to be going really fast from the minute her waters broke."
On the phone, an emergency responder talked Karolyn through steps she should take to support her daughter Gena and stayed on the phone until paramedics arrived.
Karolyn said: "The baby was born not breathing, it was 44 minutes before she took her first breath. We eventually got into the ambulance and she was resuscitated.
"My daughter was told to prepare for the worst, that the child wasn't going to make it and she wasn't breathing. They thought she was dead.
"She was diagnosed with having brain damage, secondary to that she also has cerebral palsy, epilepsy, and dystonia. She has no swallow and so is drip fed. She recently went through her first operation to have the feeding tube put into her stomach."
Karolyn has been going through training alongside Ariah's other grandparents and her parents to learn how to administer medication and suction her secretions.
Since she was born, the youngster has not met many members of her family.
"She's almost seven months old and in that time she's never been home, she's constantly been in hospital," Karolyn said.
"The child has never met any of her family. We took her pram up so were able to walk her around the hospital, so we've been able to let a family member or two see her, but nobody has been able to physically come and meet the baby."
Ariah's diagnosis has had an impact on the family, with mum Gena unable to return to work as a care worker, and her three-year-old brother struggling too.
Karolyn said: "It's the whole family that's being affected, it's absolutely horrific. I've never felt stress like it in my life. I've broken out in psoriasis all over due to the stress.
"When Gena had the baby she had to go out of work and god knows if she'll ever be able to go back, she probably will never be able to. It's a struggle for her, and she's struggling financially at the moment as she's in hospital every day.
"She also has a three-year-old son who never gets to see her, it's hard on him, he's been having wee struggles himself at pre-school.
"I'm not working at the minute myself, and am in the process of doing direct payments so I can be one of Ariah's full-time carers. That will become my job to give Gena a break, and to give her time with her son too. But it feels like it's never ending."
Describing her granddaughter as a "warrior princess", Karolyn said they're trying to get her specialist equipment to give her as much support as possible.
"I'm trying everything to get her the help she needs," she added.
"I'm trying to to help Gena out with the cost of things she'll need. With the dystonia, Ariah will need proper seats to sit on to help reduce the attacks.
"They're costing £2,000 apiece and that's not something someone who's had their life turned upside down can afford at the drop of a hat. I want to try and do everything I can to help.
"I feel a special bond to the child, obviously because I'm the granny but also because I helped deliver her as well. I felt like I couldn't do anything to help her, I feel a bit guilty, everything goes through my head wondering if there's anything different I could have done."
The family are fundraising to get specialist equipment to help with Ariah's development.
You can find out more and donate to their fundraiser by clicking here.
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