After four years of trying to have a baby, in 2015 we found out that we were finally pregnant – with twins no less!
We welcomed Clark and Dudley into the world in March 2016. We noticed at 5 months old that Clark wasn’t opening or using his right hand. Our doctors vaguely mentioned “developmental delay”, but to just “wait and see”. However, I had read that a baby with such an obvious hand preference was a red flag – we knew something wasn’t right and pushed for an MRI.
The MRI scan (at 8 months old) revealed a rare 4cm porencephalic cyst (cavity) in his brain, confirming a diagnosis of hemiplegia cerebral palsy.
What we now know is that he suffered a grade IV brain haemorrhage (one of the most severe types of stroke) around the time of birth; apparently just “bad luck”. We were again told to go home and wait and see. We were told to stop asking questions about why it happened and possible treatments; that nothing would change things. We were told to be thankful that he wasn’t in a vegetative state considering the extent of his brain injury. We were told he would “probably” walk but that they couldn’t say how well. We were told his right hand would be nothing more than a “helper” hand at best. It was an emotional time.
What we weren’t told about was all the therapies and support groups that are out there. We refused to just “wait and see”- and we believe that early intervention can, and already has, helped Clark. We were particularly excited about Constraint-Induced Movement Therapy (CIMT) and felt it was Clark’s best shot at gaining any level of function of his right side. It’s relatively new and not available on the NHS. There is a centre in the UK, but it would cost £9k. We searched further afield and learnt about a clinical trial that is currently happening in Virginia, USA. The physios there are experts and include people who have worked on it since the foundation of the therapy. The idea is to constrain the unaffected side to encourage use of the weak side. It’s already proven in adult stroke patients, but this was the first study on infants – the results so far show great things, given the ‘neuroplasticity’ of young brains and the ability to rewire.
The trial is free as it is for medical research. We crowdfunded just before the twins’ first birthday in March 2016 to raise money for the flights. We got accepted onto the trial (the only people from the UK!), and we flew out in September. We spent 5 weeks learning from the truly wonderful people at Virginia Tech Carilion in neurorehabilitation research.
Our therapist, Dory, came to our room every morning at 8am and worked daily with Clark and solidly for three hours at a time. We achieved his first steps; his first attempt at pincer grasp and isolating his pointer finger, and so many other firsts. He increased his ability to reach, to turn his hand, to assist with dressing, and generally increased awareness and ability of his right side to the point where it blew our expectations out of the water! Before we went, he would rarely attempt to use his hand and only when we constantly prompted him to. Now we find him not only spontaneously trying to pick up toys with it, but succeeding.
He also attends a wonderful conductive education charity called Small Steps, every week.
When we look back to a year ago, it was hard to get past all the “whys” and recognise that strength was needed instead of tears. It may have felt like we were falling apart, but it has made us very tight as a family, and that includes extended family and friends. We’ve learnt so much. You never know what other people are going through I would obsessively look at other babies’ hands; to see if they looked the same as Clark’s; to see if they were going through what we were going through. But I realised they might have been going through something completely different and just as difficult for them. Also, I’ve learnt that you can ask for help. Your real friends will surprise you with their understanding, generosity, and love.
Looking at how he’s progressing, his abilities do not reflect what we can see on the images of his brain. He is working so hard and he amazes us every day and it’s all about hard work and neuroplasticity whilst he’s an infant. The highs outweigh the lows nowadays. We have rough days sure. Sometimes Clark gets so frustrated with himself it’s upsetting to see, and we worry about his future, but then he’ll do something amazing to remind us he’ll be okay. I can say with confidence that “use right too” is the most-used phrase in our house! Of course, he also has his twin brother Dudley, who is simply an amazing brother. We know he’ll be the best support for Clark in the future, and keep encouraging him to use his right side.
It’s already beginning to look a lot like Christmas for us, with walking starting to become Clark’s preferred method of getting around. We don’t know what the future holds for Clark, but we do know that there are so many possibilities! There are so many exciting therapies to investigate further and so much room for change.
So, we will be doing more intensive therapy with Clark whist he’s young. We are aiming to go back to America in May. We set up “ClarkFest” last month, which was a charity gig and raffle and raised an incredible amount of money. ”
Clark is also now under the Evelina Centre at St Thomas’s, and they were just as enthused about the US therapy as us – they are developing a pilot scheme and teaching local physiotherapists on constraint therapy; we are meeting with them just after Christmas to take things further and hopefully linking them up with the guys in Virginia to share the knowledge.
Brad & Jenny Murray – Proud parents to Clark and Dudley
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 and their families. 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:
2017-12-21T16:47:02+00:00 December 15th, 2017|Comments Off on Clark’s Story