Seven-year-old Jack Smith lives in Rayleigh with his mum, Kayley, and step-dad Bobby and he loves Peppa Pig, swimming and music. When Jack was born in August 2008 complications during the second stage of Kayley’s labour left Jack with severe brain damage.
When Jack was born his heart rate was dangerously low, his umbilical cord around his neck and he needed full resuscitation. Kayley was told the next 24 hours would be critical.
“The night he was born he started to have seizures which is when they knew the extent of his problems but I didn’t know how badly damaged his brain was until he had an MRI scan when he was 10 days old. It showed that he had significant brain damage and that he would have a reduced life expectancy.
“It was all a blur and I was hysterical every day so I didn’t really take anything in. When you get to the end of your pregnancy you think you’re going to have a healthy baby, you don’t think that things can go wrong.
“I cried every day until he was six weeks old. I remember that the nurses stopped asking how I was because every time they asked me I’d just start crying again. I was 22 and it’s a huge shock even having a baby but when things don’t go right it’s really traumatic and even now I feel sad about it, I don’t think I’ll ever accept what happened.”
The results of Jack’s MRI scan revealed the damage to his brain was widespread and he would be severely disabled, quadriplegic, had cerebral palsy, problems with his vision, hearing and swallow. Kayley was told Jack’s life expectancy would be four years.
“That’s what I always used to remember, four years, obviously he’s seven now and I know he’s really vulnerable. It was a horrendous time, I was devastated but I didn’t really understand I think I was in shock. Even now I don’t really think too far in the future, you try and do it bit by bit because now the future scares me to think of him growing up and getting bigger. I don’t know if that’s because as he gets bigger it gets harder or because as he gets older his years come down.”
Jack remained in hospital until he was five and a half months old and had several surgeries to fit tubes direct into his stomach for feeding and to help with severe reflux. He now requires 24/7 care, can have seizures every day, needs medication nine times a day and three monthly IV antibiotics, has scoliosis, both his hips are dislocated and has developed abdominal and stomach problems. He also needs physiotherapy, mouth care, position changes and suctioning.
While Jack was still in hospital, Kayley was referred to Little Havens Hospice.
“Jack was about three months old when Little Havens was mentioned. I didn’t want to go at first, when you think of a hospice it’s scary, you don’t think of it as a happy place you think of death and you don’t want to associate that with your child. Eventually I decided to go and have a look around and when I arrived I thought it was lovely, everyone was so nice and welcoming. I remember the first day we went and they took Jack off and said they’re going to go wheelchair dancing and I just through ‘wow’. Then another time they said they’re going to go and do wheelchair painting and I couldn’t believe it. I would have never thought of doing something like that with him.
“We had a lot of stays at first, we were there every six weeks for three or four days so they had a lot of input and helped a lot because it was exhausting in the beginning. I don’t know what we’d do if we hadn’t had Little Havens. Jack likes the sensory room and the swimming pool is amazing. The first time I took him swimming was at Little Havens when he was about nine months old, I’ve got a picture of that moment and I love it. To be able to do that was lovely, as I didn’t think I’d be able to but the Care Team suggested it and we had suctioning ready by the pool.
“He likes crafts and music as well, Ruth does music therapy and he’s very responsive to it. He likes rough and tumble, being outside in the sensory garden and going on the swings. Those kind of things that you don’t get to access outside as not many places have a disabled access park. He loves to feel the wind in his face.
“The bedroom facilities are amazing too, the light projectors and sensory things they have in there.
“Just knowing that Little Havens are there if we need them or that we have a stay coming up gives me peace of mind. It gives us time to relax while Jack is looked after, having fun and stimulated. I can go upstairs and actually relax because I do find it hard to leave him. People ask me why I don’t leave him there but respite means different things to different people, for me it’s not having to get up at 5am and do his medication or turn him through the night, but I can still be with him as his mum. It’s a huge pressure on our daily lives and Little Havens helps to alleviate some of that.
“Little Havens is like a family. You can be as involved as you like so I can still be around while they do the medical stuff if I want to and I can still be there to hug Jack and hold him while I’m there because most of the time I don’t feel like a mum. I feel like a nurse or a carer because his medical needs are so complex that you don’t get time to do the ‘mum’ stuff. I’m always thinking ‘is his temperature a bit high’, ‘is he going to get sick and need to go to hospital’, you’re always thinking about his needs and what can happen next. So when I’m at Little Havens I can take a step back.”
If your child has been diagnosed with a life-limiting illness, Little Havens Hospices can help. Find out more about the care and support we provide here.