May is Stroke Awareness month. At Mini First Aid we are helping raise awareness of stroke in babies and children, and are honoured to share little Lily’s story, after she had a stroke at just 19 months. Lily’s mum Eszter took the time to reach out to us to make other parents aware of what the symptoms of stroke in a toddler might look like, and what to expect whilst on the road to recovery.
Stroke in babies and children: Lily’s story
Eszter, thank you so much for sharing Lily’s story – can you tell us a little more about Lily prior to the stroke?
Of course, Lily is our first baby and I was very fortunate to have an easy pregnancy and birth experience. Lily was a lovely baby and developed into a very chatty toddler who loved to run around!
Lily was just 19 months when the stroke happened – I can’t even imagine how you and your husband must have felt...
We were utterly terrified for her life. I’ve never seen my husband cry before but he cried the night she had her stroke whilst he held her. This was the most scary stage as we didn’t know if the stroke had affected Lily cognitively or just physically – she might have needed a wheelchair for the rest of her life or never been able to speak again, it all races through your mind.
I know it was just a normal day when it happened, can you tell us a bit about when you first noticed something might be wrong, Eszter?
Lily was playing on the sofa and fell off, bumping her head – it wasn’t a high fall, and after a little cry she carried on happily playing. However, within 10 minutes she was crying a lot and seemed very miserable. As she’d only had a short nap, I put it down to tiredness and put her in our carrier to go for a walk. It’s an inwards facing carrier and tends to do the trick in sending her off to sleep! As I put her in the carrier I thought she felt very heavy, but put it down to her tiredness, and wasn’t at all surprised when she went to sleep during our 20 minute walk.
What happened when you got back from the walk? I popped Lily onto the sofa to come around and she sort of leaned into the corner. I honestly didn’t think anything of it at the time which I know sounds crazy in hindsight! Not crazy at all Eszter, I’m sure it would have been the furthest thing from most parents’ minds that this could have been a stroke... Absolutely – so I carried on with our day as normal and started prepping her dinner. However, she still seemed very upset and unsettled so I made her a bottle of milk. She drank this, but looking back, only held on to it with her left hand. She was still sinking into the sofa as well. I picked her up and she felt really heavy again, and alarm bells started ringing. I popped her on to the floor because I thought something was “off” and this was when I knew something was really, really wrong. Lily couldn’t sit up unaided and fell over on to the floor. From what I could tell she was paralysed down her right-hand side. I rang my husband, and even though I was really freaking out I picked Lily up and walked her round the house to keep her, and me, calm. |
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You did amazingly staying calm Eszter, that must have been a real effort. What happened next?
We took Lily to A&E and the moment we said she’d had a fall and is now paralysed on one side we got seen. It still never occurred to us that this could be stroke. Following a quick assessment she had a CT scan, but this is so tricky with toddlers as they won’t lie still! We were reassured by being told there was no obvious brain damage or bleeding on the brain, but still so anxious as there was no explanation for what was going on. Her right arm and leg weren’t working at all, she had a droop on the right side of her face and she was barely chatting, so unlike our usually talkative girl.
When was stroke first mentioned?
It was 3am by the time it was mentioned and I appreciate everyone is just doing their jobs but poor Lily had been scanned, prodded, cannulas had been put in, blood had been taken – as anyone going through an unexplained event in hospital will know its just a really long and difficult process. The staff raised the possibility of stroke and got in touch with Bristol Children’s Hospital who advised them to administer a first dose of aspirin. We were out of our minds with worry.
So by now you knew it was stroke, but what caused it and why did they think this happened to Lily?
We were transferred to Bristol and met with the Head Neurologist there. He was really helpful and explained that her stroke had been caused by a very rare condition called “mineralising angiopathy” – as far as he was aware, there had never been a case in the UK before! In simple terms it meant she had calcium deposits on her brain, which had built up from a young age. Combined with the small bump to the head, the stroke was triggered, but it was explained the stroke was essentially waiting to happen due to the calcium deposits. It would naturally have occurred around this age, regardless of Lily’s small fall from the sofa, and this made us feel a little better.
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Following the diagnosis, what was the treatment plan? After a few days despite some movement in her right leg, there was no sign of improvement in Lily’s hand or arm. The doctor was honest with us and said that based on his research (acknowledging there was so little known about this type of stroke), there was a 90% chance Lily would walk again. But it was bad news about her hand, which we were told might never recover, and may remain permanently seized up into a fist. Even though we had the encouraging news on the walking front, it was devastating to hear our little girl may only have the use of one hand for the rest of her life. By day 6 post stroke, Lily was learning to walk again whilst holding our hand, and using her arm a little even though there was still no improvement in her hand. We tried putting spoons in her hand, stroking her hand to encourage her to acknowledge it but it just flopped lifelessly to the side. |
When did you get to go home?
A few days later with further appointments booked in. It was a relief as we’d been in the hospital for a week and a half on a busy ward and then a room shared with 3 other patients. Lily was delighted to be back home and we were overjoyed when she started to walk unaided again. Then completely out of the blue she used her right hand to pick up her spoon and feed herself! She even pressed buttons on her toys! Over the moon is an understatement, and the neurologists were amazed when we returned to hospital. Lily had an MRI scan done, which showed the scarring to the brain from the stroke and the build up of calcium. We were told this would slowly dissolve, but that Lily would need to take aspirin daily for 2 years.
Lily continued to have a limp for a few weeks post stroke, and thankfully, her speech returned to normal during this time and she continued eating with both her hands. The relief was immense.
How is Lily doing now Eszter? We’re almost 2 years post stroke, and she is doing amazingly. She is right handed, despite that one being the one affected by the stroke! Her dexterity is really good - she loves threading beads to make bracelets. The limp is gone and her language is really advanced – you really wouldn’t know she had a stroke. A follow up MRI scan a few months back showed that the calcium deposits have cleared up, and we have been discharged from hospital care – the doctors don’t expect that Lily will have another stroke. How do you feel now? Well, we now have a 10 month old and are so busy we don’t often think of this time! But when we do we are nothing but grateful. Lily’s recovery was initially predicted to last months, and also not be a full recovery. She has exceeded all of our hopes and I like to think her resilient personality has a lot to do with it! |
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Do you have any advice you’d like to pass on Estzer?
I think we all know the signs of stroke (see below), and we would almost certainly easily identify them in an older person using the FAST method (Face, Arms, Speech, Time). But I never in a million years would have thought that a toddler could have a stroke. It’s lucky we got her seen so quickly, and even luckier it happened on a weekend day, rather than in her sleep, or on a nursery day when she’s not with us.
My other piece of advice is to always advocate for your children, and sense check what you’re being told. On the night of her stroke, we were told not to feed her because she was due an MRI scan under general anaesthetic the following morning. We were then told she’d have an MRI scan as soon as we arrived at Bristol Hospital, so we carried on not feeding her. By this time she hadn’t eaten for almost 24 hours, and was scarily weak. I chased the staff until they finally confirmed that no MRI would be taking place, so we could feed her. In hindsight, this was terrible – Lily’s brain was trying to recover from a stroke, the last thing she needed was to not eat. So if you ever find yourself being told something, especially when being transferred between hospitals, where sometimes the messaging can get lost, make sure to keep pushing if things don’t feel right. I wish I’d pushed harder - of course that’s really hard to do when you haven’t slept, and are terrified for your child’s life...
Estzer, thank you so much for sharing Lily’s
story and your insights. Education and awareness are key to the FAST treatment
needed for stroke and even though stroke in children is rare, hopefully this
story might help one of the 400 families in the UK affected by childhood stroke
every year.
So what is the FAST acronym and what are the main symptoms of stroke?
The main symptoms of stroke can be remembered with the word FAST:
- Facial weakness: can the person smile? Has their mouth or eye drooped?
- Arm weakness: can the person raise both arms?
- Speech problems: can the person speak clearly and understand what you say?
- Time to call 999 if you see any of the above signs
Acting FAST will give the person having a stroke the best chance of survival and recovery – make sure you call 999 straight away if you notice any of the above signs.
Other symptoms of stroke which also require immediate medical attention are:
- Sudden weakness or numbness on one side of the body, including legs, hands or feet
- Sudden blurred vision or loss of sight in one or both eyes
- Sudden memory loss or confusion, dizziness or a sudden fall
- A sudden, severe headache
If you spot any of these signs of a stroke, don’t wait. Call 999 straight away.
Our Mini First Aid 2-hour First Aid Awareness Class for Adults covers stroke as well as heart attack, CPR and using an AED. This course is for adults who don’t need a first aid qualification for work, but want to learn the essential skills needed to save the life of a family member or friend, or to give first aid if they are first on the scene in a medical emergency. You can book this class here.
Sources: NHS UK, The Stroke Association
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