Watching my baby girl suffer from seizures has scarred me for life

I’ll never forget the first time it happened.

I was sat at my desk having just recently returned to work after a wonderful six months of additional paternity leave. 

My dad, who had been with my wife and daughter at the zoo on this particular Friday afternoon, rang me up.

“Don’t panic”, he said. Not a good start. My stomach is immediately in knots. What is it?

“We think Cordy has had a seizure but she’s OK. She’s in an ambulance on the way to hospital”.

My heart sank. How could this happen? My baby girl, just ten months old, has had a seizure?

The first person that enters my head is my older brother who has epilepsy. What if my girl has it too?

The hospital is only a mile or so away from where I worked but the drive felt like an eternity.

I arrive at A&E to find the girl cuddled up to mummy. Her usual beaming smile is absent and she’s very sleepy.

I pick her up and hold her tight to my chest – I feel better for having her in my arms, but that worried feeling is still rooted to the pit of my stomach.

Little did I know then that this fear will be with me for the next 12 months, and still rears its ugly head to this day.
It’s decided that she should be kept in for tests and monitoring. Following a sleepless night on the children’s ward we finally get the judgement from the doctor.

Cordy, they suspect, had suffered a febrile convulsion.

My instant thought is: “What’s one of those”, closely followed by “will she have another one?”.

For those who, like me in early 2014, had never heard of such a thing, the NHS website states:

“Febrile seizures (febrile convulsions) are fits that can happen when a child has a fever. They most often happen between the ages of six months and three years.

“It can be frightening and distressing to see your child having a seizure, particularly if it’s their first one. However, the fits are usually harmless and almost all children make a complete recovery afterwards.”

We were told that one in 20 children have febrile convulsions at some point and it may be the case that she never has another one, so we headed home with our information pack hoping for the best.

During our girl’s seizure her temperature soared, her eyes rolled upwards and her lips were blue, signs my dad was familiar with because of my older brother.

It lasted 5-10 minutes but having not been there it was hard for me comprehend how harrowing it must have been for my wife. I couldn’t imagine it and quite simply didn’t want to.

But that was all about to change. If I thought the first time was bad nothing prepared me for the living nightmare that was about to follow.

A few months had passed since that first episode and I guess we’d began to let our guard down. Maybe it was just a one-off. Wrong.

It was a hot summer evening and my wife was on her way to a meal with work colleagues when Cordy became unresponsive in her high chair.

There’s no other way of dressing it up – I panicked. I panicked a lot. She was burning hot so I stripped her down to her nappy and stood in the garden frantically scrolling down to my wife’s number in the mobile phone contacts.

Her instant reaction was to tell me to ring an ambulance and that she would meet me at the hospital.  

The paramedics arrived with my daughter still in my arms, motionless and staring straight through me.

Why wasn’t she coming back around? Am I going to lose her? I was terrified.

The next part was a blur. I vaguely remember being sat in the ambulance talking to one of the paramedics while her colleague cared for my daughter.

I was trying to remain calm on the outside but I was crying inside.

We arrived at A&E and she was raced through the doors straight past my shellshocked wife.

It turned out my daughter had a second seizure in the ambulance. 

Although she was getting oxygen into her body she wasn’t getting carbon dioxide out so she was tubed up and her breathing aided by a machine.

It was all happening so fast and I couldn’t have felt more helpless.

Once she was stable she was taken to Alder Hey Children’s Hospital in Liverpool and placed in intensive care. How could this be happening?

Seeing her precious, delicate one year old body covered in wires and tubes was heartbreaking. It’s so hard to remain positive in that situation, your natural emotions are to fear the worst.

It was the early hours by now and the wonderful medical staff urged us to get some rest before setting up makeshift beds in a room just for me and my wife.

You might be thinking how could you possibly sleep in such circumstances but exhaustion had got the better of us by this point and we managed to get a few hours.

When we woke up we rushed back to see her and were informed she would be brought back around later that morning.

Yet more dark thoughts began to spring up in my head. What if there is lasting damage? What if the girl that wakes up isn’t the same happy, smiling one that I’d been feeding the evening before? I’m not ready to say goodbye to life with that girl I worship.

Those thoughts quickly vanished within a groggy few minutes of her waking up.

Much to our relief we were reunited with her beaming smile and she began moving around her bed as if it had all been a bad dream.

At last, happy tears.

As a side note to this particular episode, me and my wife got our daughter’s name tattooed on our chests, just above our hearts. For many different reasons it felt hugely cathartic and in testing times reminds us of what our daughter has been through.

I wish I could say that was her last seizure but it wasn’t. 

After another period of respite, a third struck in December 2014.

Again I was at work but this time it was the nursery calling, and as any parent will know as soon as you see them flashing up on your phone the colour in your face makes a very hasty exit.

They said she’d been sick and was very quiet. Worryingly they couldn’t confirm to me if she was having a convulsion.

I jumped in the car and arrived to find her fitting. I shouted for them to call an ambulance and held my daughter’s hand as she lay motionless on a big cushion.

Her eyes were vacant again but unlike last time her arm started to jerk and she was drooling at the mouth.

I can honestly say I’ve never been more frightened in my entire life. Is this one seizure too far? Is this the one that causes lasting damage?

Thankfully, Cordy came back around at hospital this time and as ever was soon back to her normal self. 

However, this episode was not triggered by a fever so we were referred to Alder Hey for an epilepsy test.

This will sound strange after all we’d been through but seeing my daughter with wires attached to her head being recorded while she played so innocently filled me with the most sadness.

Why is my baby girl having to deal with all this?

In the end the test showed no signs of her having epilepsy.

The last seizure she suffered was in early 2015. I was working, again, but my wife was off and made the call I dreaded receiving on a daily basis.

With the ambulance on the way, Cordy suddenly vomited and it seemed to snap her out of the convulsion.

She was taken to hospital and although very tired we made it home later that night.

Touch wood there hasn’t been an episode since.

I have no medical evidence to back up what I’m about to say but with Cordy being born nearly five weeks premature she was always a very small baby and toddler.

Perhaps she wasn’t strong enough to fight back and deal with a convulsion when it took hold?

When she turned two she seemed to grow much quicker and is now a really tall, strong girl, both physically and mentally.

I hope with the amount of time that has passed since and the fact she turns four in May, she won’t have to endure another episode.

I’m also thankful that it is only me and my wife that have to live with the mental scars.

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41 thoughts on “Watching my baby girl suffer from seizures has scarred me for life”

  1. My son convulsed at the age of 8 months through a high temperature and I will never to this day forget it. It was really scary but my hubby stayed his cool with our son as I panicked on the phone to 999 . He is 12 years old now he never did have another episode but up until now I am still wary silly huh?

    Liked by 1 person

    1. Far from it Theresa, I know exactly how you feel. If my daughter, or even my son, just go into a little daydream me and my wife are instantly shouting their names in a mad panic because that fear is always there.


  2. Poor girl! My daughter is 15 months and she cant control her temp so when she is poorly she has an average temp of 40/41 and then just slumps. They blue lighted her last month and seeing her tiny body with all the wires, like you say is every parents worst nightmare. when it comes to our children our job is to protect them but sometimes we can feel useless.


    Liked by 1 person

  3. Our first had convulsions after his immunisations, and when he had croup (3 times so far it’s caused convulsions-or sometimes he stops rewatching completely. It’s terrifying and you want to be able to fix it all with a hug. (Not just a hug with the little one but with your Wofr too I’m sure) sending love to you and your little lady. x

    Liked by 1 person

  4. I had fever seizures when I was a baby too. Now that I have my own baby, I wonder if he’ll have the same affliction as I did, and I can’t imagine how scary it was for my parents the first time it happened. They were lucky though because my grandfather was a doctor. He advised them to cool me down as soon as possible, and if I had a fever, making sure that I stayed cool could help them get ahead of it. I didn’t really have them after 18 months. I hope it’s over and done with for you! #ThatFridayLinky

    Liked by 1 person

    1. Hopefully he doesn’t. The most difficult thing we found was knowing when it was going to happen. Often there was very little if any warnings and her temperature just spiked within seconds. Her last one was around a similar age so fingers crossed!


  5. This is so scary we have had some tough moments with our twins especially when they were born 6 weeks early it leaves its mark thank you for sharing Thanks for linking to the #THAT FRIDAY LINKY come back next week please

    Liked by 1 person

  6. Thank you for sharing this. It must have been difficult to voice something so personal.

    I’ve dealt with countless children presenting to hospital with seizures (I work in healthcare) and because I know that most children do very well, it’s very easy to forget how terrifying it is for parents who may have never seen it before. This will serve as a good reminder to always look after the parents too!

    Liked by 1 person

    1. Thanks for reading. It really is a frightening experience but I hope writing this helps raise a bit of awareness among other parents. In my old job I worked on some big, front page stories but nothing comes close to the satisfaction of penning something personal and it resonating with others. Before I go, thanks to you and your colleagues for the wonderful job you all do 👍🏻👏🏻


    1. Thank you. Yeah it was a tough time but we came through it. I know it’s all relative, but some parents do go through much worse so we’re thankful that she’s been ok for two years now.


  7. As a parent I cant imagine anything more scary than having to go through something like this. I’m so pleased to read that she hasnt had any more episodes recently, although I can imagine you probably live with the fear of another hanging over you. It looks like your daughter has grown into such a lovely, strong little thing so I really hope that its all in the past for you all now. Thanks for sharing such a personal experience on #MarvMondays. Emily

    Liked by 1 person

  8. Just reading about your little girl’s ordeal gave me a knot in the pit of my stomach. I have a little girl too and I couldn’t imagine having to cope with such a terrifying situation. I’m so glad that she seems to have outgrown this horrible phase in her life. I hope it’s smooth sailing for her from here on. #BloggerClubUK

    Liked by 1 person

  9. Oh bless you this must have been terrifying, the one time I have taken my son to hospital I was out of my mind with worry, he had reactive arthritis and could not walk, when they put needles in him for blood tests my partner had to hold my arms back. I know they were helping but I wanted to rugby tackle the doctor. Seizures are horrid both my mum and younger brother have epilepsy so my childhood was putting them in the recovery position and holding their hands, its horrid as you feel so helpless. I am glad there have been no recent episodes and fingers crossed it was just a phase, lots of love and good health to you all #fortheloveofBLOG x

    Liked by 1 person

  10. I cannot even begin to imagine how utterly terrifying that must have been for you all. So glad to hear that Cordy hasn’t had a seizure for quite some time now and fingers crossed that those days are now well and truly behind you. #bloggerclubuk


  11. It’s do scary when they are small and something happens to them, especially when they can’t explain it. I’m so glad your daughter has grown out of the difficulties she is having, I can imagine your fears during testing well because my own daughter was tested for epilepsy a few years ago because of difficulties she was having with her vision. Thank you so much for writing this post and sharing it with us at #PistsFromTheHeart I’m sure the ending will bring comfort to many families.

    Liked by 1 person

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