Derby youngster not expected to survive first birthday defies the odds to turn 18

A youngster who was told by doctors he wouldn’t make it past his first birthday has defied all odds and turned 18.

Kieran Griffin was born 10 weeks early weighing just 3lbs 14oz at Royal Derby Hospital in 2004 and lives with various complex life-limiting needs.

The teenager has scoliosis of the spine, cerebral palsy and epilepsy, as well as being blind, deaf and unable to speak. 

His mum Jeanette Griffin, 42, described the moment she was told her baby boy may not live longer than 12 months.

Jeanette, from Alvaston, Derby, said: "It was absolutely devastating. Obviously, you don’t know how to prepare yourself. You sort of think the worst. I couldn’t bond properly with Kieran.

"It was very, very difficult, I ended up with depression. And, like I say, because I was told he probably wouldn’t survive I still just didn’t want to get near him because I didn’t want that hurt. Every day that goes by you’re thankful, but you’re still thinking about it."

Kieran spent 16 weeks in the Neonatal Intensive Care Unit before being taken home. His mum is now one of his many carers, who help to give him the best quality of life possible.

Jeanette said: "He’s forever smiling, always smiling. He loves doing things, he loves going out. He never ever lets anything bother him.

"He’s had so many hospital admissions. So many surgeries. He had a 12-hour operation for the scoliosis of the spine, and the whole time through that I was told he may not pull through that operation.

"But as soon as it was done, he was back smiling. Me, I would have just given up, but Kieran, he’s such a fighter. I am very proud of him."

Reflecting on how her relationship with Kieran has developed over the years, Jeanette noted how things have got better for the pair, but admits that some days are harder than others, particularly if Kieran is poorly and she feels there’s nothing she can do to help him.

As well as Jeanette’s love and support, Kieran has three other siblings who "adore" him; Mason, 13, Rosie, 10, and Hope, one. 

Jeanette said: "We try to interact with him as much as we can as a family,” she added.

“I’ve got three other kids as well and they absolutely adore Kieran and I’m positive that’s what keeps us going. They’re fantastic with him, they get his sensory stuff out.

“My one-year-old daughter sort of climbs on him and gives him cuddles and pats his chest. They’ve got such a good bond. It’s absolutely unreal and it’s so nice to see.”

Kieran loves attending Ivy House School, in Littleover, going on walks, and going to the park to feed the ducks. But his biggest outlet is attending Rainbows children's hospice in Loughborough, Leicestershire.

Jeanette added: "Their support is out of this world. At first I was worried about him going into Rainbows because when you hear hospice and young children with complex needs that are life-limited you just sort of think the worst.

"But now I can leave Kieran there, knowing that he’s safe, and come home and spend time with the other children and just recharge my batteries."

She adds: "Kieran beams when he goes into Rainbows. I’m not too sure he’s happy about coming home – they’ve just got everything there that can facilitate him. He loves the hydrotherapy pool, the music room and the multisensory room."

Sadly, Kieran has been given an updated life expectancy of just 19, meaning is only likely to live for another year or so. 

But Jeanette is grateful for the time she has had with her son, and the support network she has built with her family. She plans on making the next year as safe and comfortable for Kieran as possible.

Jeanette said: "He’s made it to 18, which we’re so grateful for. I’ve got a great network with my dad and Kieran’s other carers and providers who come in to help, which has made things a lot easier.

"But all that goes through my head now is that Kieran’s life expectancy is 19. So we keep him safe, we try to keep him as happy and as comfortable as we can."

Nishil Saujani, acting director of support relations at Rainbows, said: "We know times are really difficult for everyone right now, but there are hundreds of babies, children and young people who need our care and support, and for some, this will be their last Christmas with their families.

"As the only children’s hospice in the East Midlands, Rainbows is essential to so many families and we really hope you can support us with a donation, no matter how small."