Originally posted: 21st April 2021.
On Sunday 22nd November our eldest twin daughter, Marley, then 22 months old, fell in our family home and banged her head. After comforting her for 10 minutes until she stopped crying I noticed she wasn’t very responsive, wouldn’t sit up and was very limp – but conscious. I tried to get a reaction from her by tickling but it quickly became apparent that something was not right. I ran to the front door and shouted to my wife who was outside washing her car ‘I think somethings wrong!’. I’m normally pretty collected under pressure but I’ll freely admit I was wobbling badly.
Thinking about what to do, what happened, what could be wrong – i decided to call the non-emergency phone number in the UK, 111, for advice. After 90 seconds on hold something in my gut told me ‘no, this is serious, get going’. A sort of parental pocket presence. I threw some clothes onto her and drove as quickly as I’ve ever been to get to the hospital where we were quickly admitted and the tests began.
About an hour in she began to respond to interaction again, mainly my crisps (!), but she was still rather glassy eyed and limp and would not sit up or hold items independently. Her left side was unresponsive and she couldn’t stand.
By now I was struggling to hold in my emotions, and as someone who hasn’t cried – privately or publicly – in over 10+ years, this was likely the breaking of the dam for the days that followed! With each doctor’s visit and consultants test the news became more and more concerning. “Definitely not a concussion to last this long”, “Hmm there’s nothing on the CT scan either”, “It’s concerning that she’s leaning to one side”. It wasn’t until the end of day 2 and another CT, an MRI, blood tests and an X-Ray later that we heard the news that shattered our spirits.
“Your daughter has had a stroke.“
The rest of the night was a blur. We were alone as only one parent is allowed in the ward due to COVID so we had been tag teaming. I was the lucky one at home receiving the news via telephone. I remember sitting at home in the room where she fell and punching a hole in the ikea cabinet. It didn’t make me feel better. Nothing did. My head was swimming with thoughts for my poor daughter. This happened on my watch – i was responsible and I let this happen – and so forth. I somehow slept that night, but only because I was exhausted from being woken every 45 minutes the previous evening due to neurological tests every hour.
Back at the hospital the following morning I completely broke down when I saw Marley. I haven’t cried in public since I was a child but I just couldn’t hold it in and in front of the doctors, nurses and consultants I was inconsolable. We were then told that providing subsequent test results are positive then we’re free to go home and begin physiotherapy. The consultant said he had only seen/heard of this twice in his entire career. I didn’t care. All I could hear in my head was “there was no underlying condition that a fall exacerbated”. Meaning, without the fall we wouldn’t be here. For the first few days that was the soundtrack to my mental thought process.
Then the remarkable began.
We arrived home on the Wednesday evening and Marley decided to do what she always does when she’s on our laps – slide down and walk somewhere to play. Generally where her twin sister or elder brother are. She repeatedly tried this and I kept stopping her. Her leg doesn’t work. By the third attempt I gave in – “ok, let’s see how we go – i’ll be holding onto you”. She got down, stood unsteadily on her feet, and walked across the room to the cupboard independently. My jaw nearly hit the floor.
The following morning she walked 15 metres, squatted down and picked up a balloon and threw it at me. And so the story goes on.
8 days post-stroke Marley was walking, sitting independently, kicking, running, dancing and starting to even use her left hand to hold items in two hands and to even scoop things up off the ground. It was so remarkable that I questioned “Was it really a stroke?” – but we are still early days I concede and we don’t quite know what the damage was and how she may be affected in the future. One thing we are sure of is her personality is the same. She is funny, goofy and such a happy little girl and she kept us going when we’d look up from the hospital chair to see her toothy grin beaming back saying ‘baby shark’.
Marley has been back at nursery since the start of the year which has been amazing for her, and us mentally. In the weeks following the stroke she had a lot of fatigue so napped longer than usual and got tired sooner, which was to be expected per the doctors. Her twin sister Georgie is the boss of the group. During these tough months shes kept Marley fed and watered and brought blankets over to her when she is having quiet-time. She knows what happened and whenever Marley is at one of her doctors appointments she touches her head and tells me “Marley gone doctor for bumpy head”.
The consultants and particularly the physiotherapists and occupational therapists have been amazed with her progress; as this is such a rare occurrence they remember all about Marley and her toy giraffe, how she had a twin sister, etc. Marley has almost turned into a public figure within some of the Berkshire medical circles! In January, just a few weeks after the injury, the consultant estimated that the motor skills in Marleys leg are ~90% recovered, but her arm movement is only around 60% so we have to continue to remind her to use two hands, or her left hand. She has come on even further since then, regularly eating breakfast, painting and doing fine motor skills with her left hand out of choice.
Life returned to (from the outside, at least) normal as abruptly as it went abnormal, which is a really odd feeling. From normal, to crisis, and back again in 4 weeks. From the outside, someone unaware would have no idea the trauma this beautiful little girl has gone through.
Every now and then I remember what happened, the details and those flashbacks – as much as i try to block them out – and it astonishes me how little time has actually passed. The girls turned 2 in January and it was such a happy moment to see given where we were late November
So why are we sharing this?
We wanted to highlight firstly that strokes can happen to little ones – and the symptoms are the same. Think F.A.S.T. They can also rarely, as is our case, occur due to trauma. We also want to highlight our story to give other hope during those dark times. When you are sitting in your linoleum hospital chair at 2AM with your head in your hands looking into the darkness with only beeping for company, remember that it can get better.
Finally, we wanted to thank everyone for their well wishes and support these last 5 months. We have been absolutely inundated with support from family and friends. There are too many people to name but special thanks goes to our families, all the staff at the Royal Berkshire Hospital, all the staff at Tigers Day Nursery in Theale who have been like a second family to us during lockdown and the accident, and all the physiotherapists and occupational therapists in the NHS who have helped us on our journey so far.
If anyone is interested in reading her recovery journey, the Instagram page is: https://www.instagram.com/marleysrecoveryjourney/
2022: An Update
Originally posted: 4th May 2022.
Its been nearly 18 months since the accident and a lot has changed, both in our world and the world in general.
Throughout 2021 and beyond Marleys recovery continued incredibly well. We are now in the situation where no one would suspect she had suffered a traumatic brain injury less than 18 months ago. Her motor skills are incredibly well developed, she can run, jump, clap, draw (with her affected side), use cutlery, etc and she has retained her absolutely bonkers sense of humour throughout.
We’ve found she is still clumsy and will fall over quite regularly/trip over steps, but thats not to say she would not have been that way any way, stroke or not! She also tried to fall down the stairs on Christmas day 2021, which gave us all palpitations…!
The doctors and occupational therapist’s continue to be amazed by her progress, to the point we are now on an open referral and dont expect to have to see us again unless we have any concerns – which makes us all very happy.
In May 2021 we were very proud to take part in Stroke Awareness Month (‘Make May Purple’), working alongside Marleys nursery – Tigers Day Nurseries at Theale (who did all the hard work) – to raise over £1600 towards the Stroke Association.
We got through this somehow and so far have had a pretty amazing recovery. Others may not be so fortunate. We wanted to provide this brief update to show that there is light at the end of this tunnel, and if you are going through a similar journey to keep the faith in those dark times and use Marleys recovery as your own personal hope.
We hope Marley and her story can inspire others to a full recovery.
