Ben's Story

Ben has a rare chromosome disorder which has left him with breathing and feeding difficulties, heart defects, slow growth and poor hearing.

When Ben was born he didn’t cry, never made a sound and he didn’t feed.  He had slit-like eyes and his forehead just seemed a bit too high – he looked perfect to me though, because he was my baby.  

He was tiny, only weighing 4lb 13oz, despite being two weeks overdue. When he was four days old we he was sent to Southampton Hospital for tests  and we were told he had a chromosomal abnormality.  He’s got a 11:14 chromosomal translocation – basically too much number 11 and not enough number 14. It’s very rare.

He has feeding and breathing difficulties, minor heart defects, developmental delay, slow growth and poor hearing. The hearing has been partially solved by hearing aids but the other problems have not been so simple to deal with, needing surgery.

When he was little Ben kept having bronchiolitis - I lost count of the number of times he went into hospital. Things would be fine for a while and then there would be an emergency, fine for a while and then ill again, and that’s how it went.

I missed out on a big part of Jack’s early life because of all that time spent in hospital. Ben’s breathing got worse and he ended up needing a tracheotomy – a tube into his throat to help him breathe.

I remember thinking how it would ruin our lives, that we’d never be able to go anywhere or do anything ever again because of the equipment we would need. It was really hard for me to come to terms with and I shed a lot of tears.

Looking after a child like Ben can be a very lonely existence - we live in an isolated place and I don’t drive so it is easy to become housebound. Even when you do go out there is so much heavy kit that I need for Ben it is hard to carry it all around. Most people don’t think twice about popping out to the supermarket, they cannot begin to imagine what it is like for us. We can’t ‘pop’ anywhere - every journey takes huge planning and effort.

I don’t know how I would have coped without Julia’s House. Ben has an amazing bunch of nurses and carers who fill me with confidence. They look after him a couple of times a week so that I can have some extra time with Jack. It is easy for siblings to get completely overlooked when you are so busy looking after a child with a lot of demanding medical conditions. There is no denying it does have an impact on Jack.

Getting time back for me and for Jack feels amazing. We have one-to-one time, go out or even just do the shopping; going round the supermarket without having to cart all the paraphernalia that Ben needs is great.

I have care sessions mainly at weekends or in the evening – at bath time. These are lovely chilled out sessions for all of us.  The carers give Ben a bath and then read him some stories while I have some tea with Jack and then give him a bath.

Instead of bath time being this awful rushed stressful business for the boys, Julia’s House has turned it into a relaxing occasion when the boys can enjoy a play and a soak.

I trust Julia’s House completely with Ben and even then I still find it hard letting go, with him being so little. He is actually eight years old but I think of him as being much younger because he is so small - he looks like a three or four year old.

Everything Ben achieves is progress - he can get around with a walker and can sit up on his own. He wears a band round his head which helps his hearing but he is such a bright boy that he picks up a lot visually - he takes in everything that is going on - and he never stops smiling!

Ben absolutely loves painting and crafts but I hate mess - so that’s one thing I am more than happy for Julia’s House to deal with! Ben loves visiting the hospice but getting there can be a challenge for me. Being able to have care at home instead is fantastic - it’s such a flexible service which is just what we need.

Me, Ben and Jack all love going to Housemates - the community sessions where we can meet other families and the boys can play while I have a coffee and a chat. The Julia’s House complementary therapist came to the house and gave me a facial - it was the most marvellous thing, sooo lovely, such a treat. People just don’t realise all these extra things that Julia’s House do for families.

I’ve been to so many lovely parent activities including a sleepover with some other mums at Milton Abbey School - it was such fun.

No-one knows how long Ben will live but right now he is as well as he has ever been. This is the hand we have been dealt, and we’ve just got to get on with it. I can’t imagine Ben, or my life, any other way now.

Become a Julia's House Nurse

Anyone thinking of becoming a paediatric nurse or changing jobs should not be put off by the idea that Julia’s House is a scary place. Coping with the death of a child is the part of the job everyone focuses on and yet there is so, so much more to being a Julia’s House nurse.

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The biggest thing that Julia’s House has given us is some ‘normal’. They have given me some respite – and Ben, too. We both get the chance to have some time to ourselves which helps to make our time together even more special.

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