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Henry's Story

Henry has a condition called Pierre Robin Sequence which meant he had a cleft palate and a small chin.

Henry's mum, Harriet talks about how the support of Julia's House helped them all through a difficult and worrying time...

I never appreciated Julia’s House provided care for children like Henry. I had always assumed a hospice was for terminally ill children, but we were told Henry would qualify for support as his condition was classed as life-threatening.  

Henry has a condition called Pierre Robin Sequence which meant he had a cleft palate and a small chin. He was in neonatal intensive care for the first three weeks of his life. At home, it became clear he was struggling and each breath was laboured – we couldn’t put him in a car seat to go anywhere as he could not cope in a sitting up position. He was working so hard to breathe and becoming exhausted.

He ended up being fitted with a tube that went through his nostril and down the back of the throat to keep his airway open. This needed constant monitoring and suctioning to ensure it didn’t get blocked or pulled out.

That was when we were referred to Julia’s House. If I timed the community care sessions, the nurses would change the tapes, airway or feeding tube for me. It sounds daft but having someone else so capable doing those jobs allowed me to focus on being a mummy to my children, not a nurse.

We started off with community care – a nurse would come to our home and look after Henry while I had a break. It is wonderful to be able to share the care of your child with other people you can truly trust. 

Our daughter Pippa had often woken up to find I wasn’t there because I had to rush Henry off to hospital in the middle of the night, it must have been worrying for her. Pippa wasn’t often the centre of ours or anyone’s attention. To be able to leave Henry at the hospice and take Pippa out for some one-on-one time was so good. It was lovely for Pippa to feel the focus back on her.

Julia’s House for me, Richard, Henry and Pippa has been a fantastic, warm loving experience. We never expected to need the help of Julia’s House, but we were so glad to have it.

 

 

Even when Henry seemed better I still went along to Housemates and Minimates, they were so relaxing and accepting. Normal toddler groups were really stressful as other children would come up to Henry and might try and pull out the tube - but at Housemates there was none of that worry.

During this time we were not actively receiving care time but still under the wing of Julia’s House. Melany would keep in touch to make sure we were OK, give me a ring for a chat – it was lovely to know that there was someone out there who totally understood what we were going through.

She was like a silent support, always there in the background, someone I could rely on. Melany is very professional and calm and nothing is too much trouble. When Henry had surgery to repair his palate we thought we would turn a corner. It was quite a shock when things didn’t go quite to plan and we found Henry struggling again. He had to have his breathing tube back in as his airway wasn’t safe.

I emailed Melany to let her know and she immediately put a care plan back in place for Henry – it was almost seamless and so fantastic that we could just pick straight up where we had left off with the same team of nurses and carers.

This time we chose not to have the care at home but at the hospice so that Henry would get to meet and play with some other children safely. He absolutely loved it and had such a brilliant, fun time. He would do painting or dress up as a policeman, play on the swing – a hundred little things that all children get up to.

If there are any parents out there that think that a hospice referral is a negative thing, please consider it as a positive. It means your child is going to get support, in the most wonderful way. What I would say to those parents is a referral to Julia’s House is always going to enrich your life.

Julia’s House didn’t just provide care for Henry. They provided support and friendship for all of us, it's a truly magical place. We will soon be leaving the wonderful care of Julia’s House, and would all like to say a huge and heartfelt thank you for their support, excellent expert care, friendship and of course lots of laughter! 

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"If there are any parents out there that think that a hospice referral is a negative thing, please consider it as a positive. It means your child is going to get support, in the most wonderful way."

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