“As I write this my daughter Isabel will be turning 7 tomorrow. I can only describe her today as like a bottle of pop – just ready to pop (with the excitement of it all). In three weeks’ time, it’ll the her sixth “stroke anniversary” as she was just a year and three weeks old when it happened. My husband and I didn’t appreciate children had strokes and thought it was something that just happened to “old” people or to the middle aged if you were unlucky! How naïve we were!
Isabel had been suffering with a virus for 8 days prior to her stroke and we’d seen a doctor most days – on one of those I went twice in the same day as she seemed so very poorly They just kept telling me that it was viral and to give it time for her to recover. On the day of her stroke we’d had her at the doctors at 4.30pm and I asked whether it was time to admit her to hospital, as I couldn’t get her temperature down under 100 degrees (with Calpol) but I was fobbed off with antibiotics and a promise that a nurse would call later.
At just after 8pm that night I heard her cry out and said to my husband that I didn’t like the sound of that and went to investigate but found her asleep (or was she unconscious?) so left her. When she woke in the night I offered her a bottle of milk and it came out of the left side of her mouth. The doctor had said she had a sore throat so just thought it must be really sore and she couldn’t swallow. The next morning a nurse called, and my husband told her that he didn’t think Isabel’s eyes were focussing properly. She got her car keys out and tried to get Isabel to follow the keys – she told us that she may have problems focussing if she was having a temperature spike. She left us with a promise to call later in the day and Isabel grizzled most of the day and we noticed her not sucking her thumb which she’d done up until the day before. My husband noticed that her left side wasn’t “right” and brought this to the attention of the nurse when she called later. She then gave her the once over and got us an appointment with a GP.
The GP thought she needed to be admitted to hospital so wrote a letter and we had to wait for two hours to be seen on our local children’s ward. In that two hours I could really see her going downhill rapidly and was somewhat frantic, to put it mildly! Eventually they found us a bed and once the registrar had seen her, she got the Consultant and things finally started to happen. They did a CAT scan which confirmed a stroke and she was transferred from Portsmouth to the Paediatric Intensive Care Unit at Southampton General hospital, who discovered that the left side of her brain was also about to have a stroke. They managed to stop this happening and saved her life. However, having lost 70% of the right-hand side of the brain, she has been left with life-long disabilities.
We spent six weeks in Southampton having intense rehabilitation and then we came home. It was like coming home with a new born baby again. She couldn’t sit up! we weren’t really sure how much she could see, and she screamed every time I left the room. She didn’t sleep much either!
My husband and I struggled to cope – we had visited PICU before having had a daughter born with CHD five years earlier. She’d passed away unexpectedly at 5 weeks old and ten days after bringing her home. I was petrified the same thing would happen again with Isabel. Re-visiting PICU brought back too many memories and we both suffered with depression over the next year.
Although 2012 was a very tough year for all of us as a family, and particularly hard on my five-year son who very much had to take second place with Isabel’s care and constant stream of appointments, but we did get through it and I’m very pleased to say that my darkest fears weren’t realised. As days turned into months and months into the year we got back into more of a routine, and we got to know the team of health professionals who would be supporting us. By the end of the year Isabel was walking! A major milestone was achieved on that one.
It’s fair to say that her recovery has been much better than expected but she has been left with left-sided Hemiplegia and is partially sighted. She’s never really regained the use in her left hand although does use the arm up to the elbow – essential for the carrying of dollies!!
She is now in a mainstream school with support in place and doing well academically. We could have been writing a very different story here and I count my blessings that she is still with us and doing so well.
If you met Isabel, you wouldn’t realise in many respects that this girl has lost a third of the brain. She is very feisty and determined and it is these qualities that have brought her to where she is today. She tries her very best to be independent and do things for herself. I just hope that she retains her self-confidence, self-belief, and that despite the obstacles she has to overcome that she can and will do it. She’s just joined Brownies, is learning to swim and loves to cycle on her trike.
If your child has had a stroke recently and you’re reading this I can’t promise that dark times don’t lie ahead because it is such a stressful, awful time to go through and you will get fed up of the appointments and the having to fight for adequate provision for your child. But their achievements when they must overcome adversity will be even more special. Join the parent support groups that are available and as parents we need to support each other and sometimes you just need to have a rant!
Wishing you a lovely Christmas and thank you for reading Isabel’s story.”
Rebecca- Isabel’s Mum
This Christmas we want to raise awareness that stroke can happen at any age, we also want to share the impact that sharing experiences has on the lives of younger stroke survivors like Isabel and her family. We provide services that put people in contact to share these experiences reducing isolation and benefiting all parties. Now we need your help! 2018 will be a big year for Different Strokes, as we embark on new projects to provide specialist support and resources for specific ages. We are also aiming to increase the number of local support groups around the country.
What can we raise in 12 days to support this work?
If you can donate this Christmas your gift will be part of something special, something transformational, something life changing to enable a younger stroke survivors and their family members to reclaim their lives.
We know this time of year puts a lot of pressure on everyone financially and if you are unable to help in this way then please help us by sharing our campaign on social media:
2017-12-13T17:25:39+00:00 December 12th, 2017|Comments Off on Isabel’s Story