Like any little girl, Cara’s favourite thing is cuddles from mum. If anyone holds her and she can hear her mum’s voice, Cara will make it very clear she doesn’t want anyone but her mum. Her second favourite thing is lights, she loves anything bright.
Cara has a condition called nonketotic hyperglycinemia or NKH for short. It is a rare genetic condition which prevents her little body from processing glycine and means she has complex needs and severe developmental delays. She also has acute seizures and can experience as many as 30 a day.
At Acorns, we are here for Cara by providing specialist care in a way that makes mum Vicky feel safe and heard. We also support Vicky to enjoy precious moments to herself. Vicky explains:
“When I was pregnant with Cara, she constantly had the hiccups. I didn’t know at the time, but it can be a sign of NKH. Once she was born, I had a feeling something wasn’t quite right in the first few days. She wasn’t eating properly, all she would do was sleep and I hadn’t heard her cry since delivery. It was the most frustrating thing. I was just being brushed off as a new mum.
“But by day three, as my mum and I gave her a bath, she had no reaction whatsoever to the water. She was really floppy too. I called 111 and they sent an ambulance. The paramedics weren’t happy with her breathing or how floppy she was and took us to our local hospital.
“They carried out tests and her little feet were pricked all over. But she didn’t flinch. She didn’t cry. She was tested for sepsis but it came back negative. A lumbar puncture told us it was NKH.”
“I was told to prepare myself because a lot of children don’t survive. I was crying my eyes out. She wasn’t just sick she was dying. They put her on different machines to regulate her oxygen but she was so tiny they had to try so many different masks. She was given a NG tube to feed and they had to rotate her IV from her hands to her feet, because every day her body would just reject it. It was horrible.
“Her body was shutting down and we were given the options to stop treatment and make her as comfortable as possible. We told everybody who wanted to come and see her to come and say their goodbyes then it was just us. We had her christened and lay with her.”
“But she fought. We were told not to get our hopes up, but she continued to stablise and we were able to take her home.
“And she’s still here. We celebrated her first birthday, which was just incredible – from being told she wasn’t going to survive to still being here. She’s still fighting and she seems happy.”
“We learned about Acorns while we were in hospital. That it was a place we could get some support and care for Cara while I had some time to myself.
“I admit I was skeptical about it at first, but Acorns is brilliant. People don’t realise how much a place like Acorns can help you. We have stays together at the hospice and nurses come to our home. I know the nurses at Acorns can care for Cara properly and I’m so grateful for that. I’m included in everything, every decision, every conversation and I’m never judged. I feel heard. Acorns really takes to the time to learn about the child and the family, not just the diagnosis.
“I trust the people at Acorns and even though I’m not ready yet to go and leave her there, I know it’s an option if it’s needed.
“They help me too. They allow me to talk and basically get anything off my chest. It’s helps me more than I can say, it’s like a therapy session. Without Acorns I’d be miserable because I wouldn’t have much time to myself and I don’t really have anybody to fall back on.
“When the Outreach nurses visit us at home I get the chance to do simple things like have a long shower. They also know that memories are very important to me so whenever possible, they’ll make cards and crafts with Cara that I can keep forever.“
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