At six months old, Ivy started having seizures. Tests revealed she had epilepsy and lissencephaly; a life-limiting neurological condition. Her mother, Emma Pelstead, tells us about the insensitively delivered diagnosis, and how life (particularly nights) are impacted…
Emma Plested and her husband live on the south coast in Hill Head, Hampshire, with their two children: Oliver, five, and Ivy, three.
“Ivy was a very content newborn. She breastfed easily and slept well. But when she was six months old, I noticed her eyes were not focussing as they should be and asked the health visitor to refer us to an ophthalmologist.
We had recently moved to a larger house in north London, Oliver was totally in love with his new sister and I was enjoying maternity leave from my job as a primary teacher. Everything seemed fine.
By six months old, she was not attempting to roll or able to sit. She then began having infantile spasms, a type of seizure. The first time it happened, we noticed strange, repeated contracting movements but initially dismissed them as wind or constipation.Over the next few days the episodes became more frequent and I searched online for what they could be. Within minutes, I realised she was having infantile spasms. We took Ivy to A&E and after tests, scans, weeks of waiting and hoping we received a diagnosis of lissencephaly, a neurological condition, and epilepsy at Great Ormond Street Hospital.
We were shocked and initially utterly devastated. How could our beautiful, happy, smiling girl be facing such a future? What we didn’t know then was how happy she would be now – and how we would all be happy and so in love with her.
Epilepsy can make each night feel like we are embarking on a scary adventure
We were told that lissencephaly is a life-limiting condition and children do not survive childhood. That Ivy would be unlikely to walk and talk and any progress would be small. I asked if there was a support group for more information but as the condition is very rare they did not know of one.
As we walked out of the room, I remember asking the consultant to write down the name of the condition as I did not know how to spell it. We took a taxi home and we didn’t hear from anyone for several months. No follow up or support.
I wish I could go back to that very dark time and tell myself how happy Ivy would make us all. Everyday she makes us smile and laugh. She gives constant kisses and cuddles. Shouts ‘hiya’ to everyone she meets. She loves music and books and her iPad.
I feel strongly that much more thought has to go into the language used when giving parents a diagnosis for their child. A list of the worst possible outcomes then being shown the door is far from supportive.
How Ivy’s condition affects sleep
Sleep is probably the most used word in our house. Ivy has daily seizures and ensuring she has enough sleep is vital to seizure control. Her afternoon nap is so important, as if she is overtired she will have more seizures and less sleep and then in turn more seizures. The more sleep Ivy has, the happier we all are.
We take turns sleeping with her so we can be there to help her change positions, ensure she is in a safe position when a seizure starts, time the seizure in case she needs emergency medicine, check she is breathing etc. Although all of his sounds scary and of course it is, some of our favourite times with Ivy are in the middle of the night when she is blowing kisses, cuddling and laughing.
We weren’t prepared for this at all. I think we all assume our children will eventually sleep throughout the night. In a report by The Family Fund, a charity for families with disabled children, it states that 93% of parents of disabled children are up in the night with 49% of parents experiencing health problems due to lack of sleep.
We quickly realised that we couldn’t manage on our own and we moved to live near family in Hampshire. Having their support is crucial for us. I was breastfeeding Ivy until she was two and a half as it was a quick way to soothe her back to sleep and so I was doing all the night wakings. But we reached a crisis point when I was so exhausted I couldn’t think straight and so my husband took a week off work to wean her off breastfeeding.
We bought a double bed for Ivy to sleep in so we could comfortably sleep with her, which was the best decision ever. No more sleeping on the sofa or one hand through the cot. I didn’t return to work and so I can nap during the day but my husband can’t and so it can be harder for him. He has started seeing a personal trainer to improve his fitness and he finds that hugely beneficial.
We feel lucky to be Ivy’s parents and we want to celebrate her for who she is
Our son Oliver loves to sleep and can sleep through anything so he is blissfully unaware of the night time dramas. Oh and coffee helps. Lots of coffee.
Epilepsy can make each night feel like we are embarking on a scary adventure. I have always needed loads of sleep and I remember worrying about how I would cope with lack of sleep when I was pregnant but of course, you do cope and it’s ok.
I find myself waking more often throughout the night to check that Ivy’s ok. We have a video monitor for daytime naps and – as I mentioned – take turns to sleep with her each night, but even when I am not with her, I wake throughout the night.
My mum is desperate to have Ivy sleep at her house and we really should take her up on the offer. But we know how scary seizures can be and I don’t want to keep mum awake all night.
There are loads of families like ours raising children with additional needs. Sometimes it can feel like we are not represented. I love reading about diverse families and especially views on motherhood. It helps to know I am not the only one up in the night on Instagram waiting for my child to sleep.
I hope I have explained rather than complained as although we face challenges, we feel lucky to be Ivy’s parents and we want to celebrate her for who she is. It is a difficult time for families like us – with ever-increasing cuts to children’s services, it has become more and more difficult to get support.
But as mothers, we can support each other by celebrating diversity and including all types of families in the conversation.”