Living with hydrocephalus by Kelly
Kelly's son Joe was born 11 weeks early, which caused a brain haemorrhage and led to him developing hydrocephalus. Here, Kelly shares her story and explains what life is like now for six-year-old Joe and the rest of the family.
In the beginning
"Joe was very poorly when he was born and spent the first two months in an incubator at our local hospital. Within that time he spent a week at Great Ormond Street Hospital (GOSH), because the doctors were concerned that the fluid build-up in his head was growing.
"It was all very scary. Joe was so tiny and his lungs were too small for him to breathe properly, so he was on oxygen. And then he was diagnosed with hydrocephalus. It was a very scary time and we didn't know what was going to happen and how this would affect him in the future."
Joe has lots of friends and loves going to school. Image by Justin Bailey.
Specialist care
"Coming to GOSH was actually a really nice experience, which sounds really strange. But it was like a breath of fresh air compared to our local hospital, where it felt like they didn't really listen or take our feelings into account. At GOSH they really make you feel like you are the parent and you get to make the decisions.
"Joe's my first baby and I was always so used to asking at the local hospital ‘What do I do now?' and they would tell me ‘You have to do this’. But at GOSH it wasn’t like that at all. It was very much like ‘Well, you’re mummy, so you can choose what you’d like to do.’" I cried when I left there because I had to go back to the local hospital!
"It’s such a different level of care. All of the consultants and nurses are absolutely fantastic and they have such a good manner and way of explaining things. We can call Koala ward at any time if we ever feel unsure about anything. The relationship between us and the staff on the ward feels very personal, and that makes you feel very comforted, that you have that connection with them.
"Recently, about two months ago, Joe was ill for several weeks. We weren’t sure what it was and we were a bit concerned. I called the ward and they told me to come straightaway and there was an appointment free that afternoon to see one of the nurses. Joe had a CT scan and everything checked, and we went home and it was fine. But it's so comforting to know I have that support around the clock if I ever need it."
Coping with hospital visits
"Joe copes very well with his condition. He has a small fear of hospitals, but that’s more to do with bad experiences with local hospitals rather than coming to to GOSH.
"If anything, when we had to come to GOSH a couple of months ago just for a day visit, when I told Joe where we were going, he was actually quite excited and shouted 'Yes!'" He really likes the play centre that’s next to the school because they’ve got the Xbox and this amazing computer room.
"It’s really nice for me because there’s so much to entertain the children with while we're here. We had to wait three hours for Joe's CT scan, so we went to the Centre for so Joe could play on the Xbox. Then when then we got to the radiology area, there was another Playstation and Jenga game to keep us entertained. So in actual fact, he quite likes to see you!"
Joe with his younger brother Harry. Image by Justin Bailey.
Family life
"Day-to-day it doesn’t affect us too much. We have a care plan with the school so if Joe shows any signs of shunt malfunction, the school will call me, but other than that it's fine.
"With things like holidays though, if you want to go abroad you have to check that there’s a neurosurgeon in that country. So we haven’t been abroad since Joe was two and we we went to France. Joe became very sick while we were away.
"It was actually nothing to do with his condition – he got gastroenteritis – but they didn’t know what was wrong with him and when you’re in a country where the nurses don’t speak English, it’s very scary. That kind of put me off travelling abroad.
"But Joe's going to Disneyland® Paris in July so he’s really looking forward to that!"
Looking to the future
"Joe's come very far and it certainly could have been a lot worse for him. I think he'll always have his challenges, but I just want him to be happy and be able to lead as normal a life as possible.
"Joe knows all about his condition and where his shunt is, and he knows that he was born a tiny baby and that he was sick when he was young. But other than that he gets on well and has lots of friends at school.
"We’re just a regular family to be honest. Obviously it’s always in the back of my mind that he’s sick, so when he’s pale we first of all have to consider whether it’s a problem with the shunt, and whether we’re going to end up in Great Ormond Street. But you can’t go on day-to-day fearing what may never happen."
For more information about hydrocephalus visit Shine.
