Our December warrior – Kasper’s story

The day Kasper was diagnosed with infantile spasms (IS) was possibly the worst day of our lives. It
seemed impossible that our little baby could be ill.
He was born perfectly healthy at 1am after a normal birth, one day after his due date. We joked that
his half-English side was winning over his punctual half-German side. A week after his birth, colic
kicked in and he would feed then scream for hours on end in a constant loop. Nights were
horrendous as he’d wake almost every twenty minutes some nights or cry for hours and hours. He was
diagnosed with laryngomalacia (also known as a floppy larynx) and we considered surgery but
decided not to put him through it. The severe colic, reflux, lack of sleep and endless crying finally
caught up with me and I was diagnosed with postnatal depression and referred to a therapist.
When Kasper was six months old we took him to a Christmas party with lots of other babies around
the same age. Apart from Kasper they were all rolling and some were even trying to crawl. I felt
alarm bells ringing but friends and family reassured me that boys take longer to develop and that
Kasper was just lazy but we felt uneasy. We put the delayed development down to chronic lack of
sleep and almost zero time spent doing tummy time as he’d just scream.
At Kasper’s nine month check-up, the paediatrician was concerned that he rarely rolled and still couldn’t
sit unsupported. He recommended physiotherapy and told us Kasper would only need two or three
sessions to catch up. Now looking back at photos before this check-up, Kasper was starting to sit
unassisted but had slowly lost the ability in the run up to spasms starting. He’s not smiling in most of
the photos around that time which we now know are also tell-tale signs of IS.
A few days after this appointment Kasper made a strange movement, a little like he was losing his
balance and putting his arms and legs out to steady himself. His arms and legs would fling outwards
like he was falling forwards. Kasper had an ear infection at the time so I thought it was due to that,
however, I sent an email to the paediatrician describing the movement the best I could. He told me
not to worry and that it sounded like a normal baby movement. A couple of weeks went by and
Kasper was still doing this strange movement a few times a day. We had started referring to it as
‘jumping’ or ‘falling’. My father-in-law was very concerned when he saw it, but I told him the
paediatrician had said it was normal. He wasn’t convinced. We finally got footage of the spasms and
sent it to the paediatrician on a Saturday, two and a half weeks after we first saw one. He replied
later that day which we thought was strange as it was the weekend. He told us he’d forwarded it to a
neurologist and we felt full of dread.
The following Monday we were called into the hospital. It was late March 2020, Covid cases were
exploding and we were all full of cold. Luckily the hospital allowed us in for Kasper’s EEG. It was a
long wait for the results and we weren’t allowed to leave the room without permission. I remember
very little about the talk except for hearing the words ‘epilepsy’ and ‘spasms’. We went home in a
daze feeling like we’d been told something terrible but not really knowing why as we’d been given
next to no information. I reasoned that epilepsy was not that bad and lots of people have it and they
are fine.
When we got home, we googled ‘infantile spasms’ and we felt like our world was falling apart. We
had never even heard of it before. All we could do was cry, hug and drown our sorrows. The statistics
were bleak. The following day we started Vigabatrin (Sabril) and over the next days we increased the
dose until we saw our last cluster of spasms six days after starting treatment. A repeat EEG a week
later showed ‘significant improvement’. His MRI also came back clear. We had no idea if we could
breathe a sigh of relief yet or not.
I will always be grateful for the medication stopping Kasper’s spasms but the side effects have been
really tough at times. Sleep completely went out the window despite successful sleep training before.
He would be awake for hours at night and not sleep at all during the day. He was very floppy and his
development was so slow. He had night terrors that were so frightening we thought they were
seizures and we called an ambulance on two occasions.
Despite the trauma of everything Kasper has been through in the last nine months, he is doing
remarkably well. He has been spasm free since March, all EEGs since have come back clear and we
are now weaning the Vigabatrin. His development is slow and he is estimated to be about ten months
behind. We don’t know if he will ever catch up or if there will be long term effects of IS but we
celebrate every ‘inchstone’. We have good days and bad days. Sometimes a careless comment from
a friend will upset me for days for example, when they complain about how annoying it is that their
baby is already walking or comments like “at least he’s alive”. I worry about the future and drive
myself totally nuts but then I remember how far he has come. Nine months ago he could barely roll or
sit. He didn’t react to his name, smile much or babble. Now he’s eighteen months old and he crawls like the
wind, babbles tons, understands several words and tries to stand up. He loves books, cuddles and
being tickled. He has come a long way from the floppy, miserable and exhausted nine month old.
Weekly physio, play therapy and hours of encouragement from us have helped him to develop
despite the medication. He still has a long way to go but we will support our Kasper bear every step
of the way. We still don’t know the cause of Kasper’s IS but we try to not let that dominate our lives
Our neurologist told us joining a support group wouldn’t be a good idea as each IS child’s prognosis is
different. I’m so happy I ignored him and joined the UKIST Facebook group. They have been an
amazing support on this horrendous journey. The determination of the parents and the stories of
their heroic children have kept us going in the darkest moments. I am so grateful for the help, advice
and kindness we have received from everyone and I can’t thank you all enough.