Helen and Simon get great pleasure from watching their three children – Milly, Jack, and Theo – share a love of music and bond over an episode of The Wiggles. Although these moments are priceless to any parent, they are particularly precious for Helen and Simon. This is because their son Jack, aged 5, suffered a brain injury at birth and unable to walk, talk, sit unaided or see.
Mum Helen tells us Jack’s story and how she could not do without the help of the Children’s Hospice at Home Team that The Pepper Foundation helps to fund:
‘The worst possible news’
“Jack was born by emergency caesarean at 36 weeks and was diagnosed initially with severe jaundice. Even after a week and a half of triple phototherapy to treat the jaundice, his weak suck and low tone did not improve and the doctors ordered an MRI scan.
“We then received the worst possible news – that our perfect little boy had severe brain damage.
“Although we still don’t know for sure what caused the brain damage, the doctors suspect it may have been a blood clot in the placenta. The result for Jack has been devastating. Initially we were told that he would not live past two, but now his prognosis is to live to about 18. He has cerebral palsy, uncontrolled epilepsy and is severely sight impaired.
“Jack is a very happy boy who loves music and noise – but most of all he adores his very loud big sister and his baby brother. He is still very low in tone, suffers from severe allergies and he has many seizures every day. However we are just so thankful that we can enjoy our boy and as much normal family life as is possible.
‘I don’t feel like I am alone thanks to the nurses’
“During the darker early days, the Children’s Hospice at Home team were such a help and visited regularly to take over his care and give us a break. For a while he had a naso-gastric tube fitted and it was invaluable being able to call the nurses when we had problems with this – whatever the time of the day or night – helping us avoid a traumatic trip to hospital.
“The nurses are a great source of help and advice. I find that getting the medication and equipment that Jack needs, and co-ordinating all the various hospital appointments can be a real fight – one that I sometimes don’t have the energy for. So to be able to turn to the nursing team and get their help and support with this makes such a difference.
“I don’t feel I am alone with everything. If I need them to, they will phone other organisations and healthcare professionals to support me to get Jack what he needs. They also frequently come with me to hospital appointments. This is such a help, particularly now that I have Theo too.
“Inevitably Jack does have to spend time in hospital for various treatments, particularly in the winter when he suffers from regular chest infections. But even then, the help from the support we receive doesn’t stop. The nurses will come and see us in hospital which means they are always up-to-date with Jack’s progress. And this gives me the chance to go off and have a meal or a shower without worrying about Jack.
“Although we feel nothing but overwhelming love for Jack, his care needs are constant, even when he is well. He is now fed through a tube into his stomach, but each feed takes about two hours to do. He has a SATS monitor which frequently alarms at night and some nights we have to get up to him five or six times.
‘We could not do without them’
“All of this does take its toll on family life, particularly as we don’t have family living nearby to help. Which is why we are also very grateful to turn to the nursing team to help us get out and about, especially in the school holidays. Sometimes they stay at home with Jack while we spend time with Milly and Theo, making sure that they don’t miss out too much.
“Giving Jack the best possible quality of life is a priority for all of us and the nursing team that Pepper helps to fund are as committed to this as we are. But they also recognise that other members of the family need time and support too and that is just as valuable to us and is one of the main reasons why I genuinely feel that we could not do without them.”
You can help us to fund this vital nursing support for other life-limited children like Jack in the Buckinghamshire and Hertfordshire area.
Please donate what you can to ensure no family has to face the unthinkable alone. Thank you.