New parents Charlene and Ashley were overjoyed at the arrival of baby Arthur and couldn’t wait to get him home. However, at home they began to notice something wasn’t quite right.
Charlene said: “Arthur was a perfect pregnancy and he arrived healthy. We went home the day after but we noticed he wasn’t feeding properly. I’d never heard him cry, I’d never seen his eyes open and he was really floppy. So we were concerned.
“When the midwife came out to see us after three days, we expressed our concerns and she picked him up and realised how floppy he was. We got rushed straight back into hospital from there.
At hospital, Arthur was ventilated and tests were conducted. Initially staff thought he may be brain damaged due to labour. After 10 days Arthur was diagnosed with nonketotic hyperglycinemia (NKH) and given six weeks to live.
NKH is a rare genetic disorder that affects one child in every 76,000 born. Children with this condition have a problem breaking down the amino acid glycine. The symptoms and long term outcome of each form vary widely and every child diagnosed is affected differently. There is no cure for NKH but there are treatments.
Charlene continued: “They said he’d never breathe on his own and that we’d eventually have to turn the ventilator off. Arthur was two months old when we came to Acorns, for end of life care.
“I don’t know if relief is the right word, but it was a relief to get to Acorns, to get away from the hospital. Arthur’s dad Ashley and his sister Ellie came and stayed with so we were together as a family.
“I remember walking round and having a tour and thinking it was beautiful. I don’t think it was really until about a week of us being at Acorns that we really appreciated the place, because for that first week we just stayed in the room with him constantly, expecting the worst to happen.
“As time went on we could be a normal family at Acorns, we were able to go out with Arthur, go swimming with him, make as many memories as we possibly could.
“If Acorns didn’t exist I dread to think where we’d be. Probably still at hospital, stuck in that room. I don’t even think Arthur would be with us if it wasn’t for Acorns.
“Arthur’s proved everyone wrong. He has become more alert and we are looking at going home, we know that every child with the condition is different, we’re hoping this is a good sign for Arthur.”
Charlene and the family receive support from the Acorns Family Team and were given their own Family Team Worker called Sandra. Sandra is there to support the family in whatever way need, from providing a listening ear, to advising the parents on the best way to talk to Arthur’s sister about the situation.
Charlene said: “We’ve been having issues with a housing situation and Sandra was amazing supporting us through that – chasing things up to help get things sorted. She’s just helped with everything, she’s been there from the very beginning.
“Without Sandra I don’t think we would’ve coped as well. Especially with the housing situation. We had to provide so many documents to prove Arthur’s condition, and they wanted to know about it in so much detail, which at the time was so hard to talk about because of what we were going through. Sandra just took all that from us and did it all for us. Just one less thing to stress and worry about.”
Can you help us continue caring for children like Arthur?
It costs almost £10million a year to run our care services and we rely heavily on donations from people like you to fund the majority of this. If you are able to make a donation to help us care please do. Alternatively, discover other ways to get involved such as taking part in one of our events, doing your own fundraising, visit your local Acorns shop or volunteer your time.