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 important to any parent, they are particularly precious for Helen and Simon because Jack, aged 4, suffered brain damage at birth and is not able walk, talk, sit unaided or see. Here Helen tells us Jack’s story and how she could not do without the help of the Rennie Grove Children’s Hospice at Home Team:
“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. It was after this that the worst possible news was broken to us that our perfect little boy had severe brain damage.
“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, but 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.
“For the first year of his life he used to scream for hours on end which was a really dark time for us. It was only when the doctors realised that he was in pain from severe silent reflux and performed a Nissen Fundoplication to correct it, that the cheeky little boy we knew was in there was able to come to the fore.
“He is now a very happy boy who loves music and noise but most of all 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, but we are so thankful that we can enjoy our boy and as much normal family life as is possible.
“During the dark days of screaming, the Rennie Grove 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 Rennie Grove 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 have also been a great source of help and advice. I do 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 Rennie Grove 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 and they 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 Rennie Grove 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 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 goes to sleep at 7pm, but we have to feed him between 9 and 11pm. He has a SATS monitor which frequently alarms at night and some nights we have to get up to him five or six times.
“All of this does take its toll on family life, particularly as we don’t have family living nearby to help. So we are also very grateful to turn to Rennie Grove to help us get out and about, especially in the school holidays. Sometimes they come with us to help with Jack while we are out and 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 Rennie Grove 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.”
Last year we were able to care for 2,576 people but just 13% of our running costs come from the NHS. To help us continue to care for local families please donate whatever you can. Thank you.