My Family and Chiari

Our youngest son is called Ben. He was 3 years old when we found out that there was a
problem with his brain. Up to that point there was no inkling that something could be wrong;
it had never crossed our minds.
To cut a long story short, one day he fell; no big deal, he was swinging on a handrail, waiting
for his brothers to finish their session with Cubs. He fell on the flat of his back. He didn’t hit
his head, but he couldn’t get up. When I picked him up, his head was lolling, he was weak
and couldn’t focus. Then he started vomiting.
Off we went straight to A&E where he underwent a CT scan. The CT was reviewed and we
were told there wasn’t anything to be worried about; just a concussion and we were
discharged. But he didn’t hit his head, I thought.

When the phone rang at 2am we were instantly terrified. No one rings us at 2am. The night-shift consultant had reviewed the CT and had found a problem. Nothing to worry about she said, but could we come into the hospital first thing in the morning to see the paediatric team for a neuro exam. Ben slept on, we did not. It was that following morning we first heard of Chiari malformation. We left paediatrics that morning with little idea of the extent of the problem.

The leaflets we were given covered such a range of possibilities. Ben was fine and passed all the physiological checks. An MRI scan followed and a specialist neuro consultant appointment was booked.

We waited and researched the condition, still not really sure how scared to be. We saw that
most people live with their Chiari without resorting to surgery. Surely this would be Ben, he
had no symptoms. We tried to find examples of other parents that had experienced similar
situations to our own, but barely found anything. We thought it would just be something we
needed to keep an eye on. That wasn’t the case.

In March 2019, we saw the specialist neuro consultant and, to be frank, we felt like we had
been hit by a train that day. Ben’s Chiari was ‘massive’ and needed surgery. Our consultant quizzed us regarding symptoms, but until that fall there had been none. He felt certain that given the size of the
Chiari, and the early signs of a syrinx shown on the MRI, that symptoms were just a matter
of time. A thousand thoughts and questions whizzed through our minds, but none came out
coherently. All we could think about was we were being told he needed brain surgery, but
on the outside, there was nothing wrong with him. It was just that one day, or we would
never have known. We missed the first surgery slot we were offered, as we procrastinated and delayed and decided that we needed to speak to the consultant once again. We had too many questions.
That second trip was better, our heads stopped spinning, we had our list of questions

The fear of possible long term health problems, particularly irreversible spinal damage,
convinced us that we needed to consent to surgery. Writing these words makes it seem like
a straightforward decision, but it really wasn’t. Ben didn’t have any symptoms. But his
consultant was sure and he was the expert; calm, confident and experienced, we put our
faith in him.

Ben’s surgery was straightforward and within a few hours he was back on the ward and had
started his recovery. We were in the hospital for 6 days. It can’t be sugar-coated, they were 6
long days and nights. We had many bumps along the way; a terrible reaction to morphine,
inducing a psychotic-like state was terrifying, and the trauma of the first bowel movement
was completely unexpected. But there were also high points and clear day on day
improvements; his first words after surgery brought so much relief to me and his dad, the
first time he walked to the playroom and his appetite for the sweets everyone bought for
We were discharged on a Saturday and drove our baby home to his big brothers.
Unfortunately, this wasn’t the end of our time in hospital. We had been warned that Ben’s
recovery would be bumpy, but three weeks later after a persistent temperature and
worsening headaches, trips to the GP and A&E, we were re-admitted. At that moment his
consultant walked onto the ward with Ben crying in pain, we saw the look on his face, and he
personally wheeled Ben for an emergency CT without hesitation.
We have never been so frightened in our lives.
Luckily the CT confirmed that the surgery had been successful and that there must be
another reason for Ben’s pain and deteriorating condition. Again, he was wheeled into
surgery, this time for a Lumbar Puncture, in the middle of the night it was confirmed that Ben
had meningitis. He had a serious infection in the fluid around the brain. Almost certainly the
result of the surgery. We were told again that this is incredibly rare, and our son was
Our next stay in hospital was just under 2 weeks, and Ben was looked after by a small army
of consultants; neurosurgery, neurology, paediatrics, immunology and the general surgeons
needed for the central line to deliver the broad range of antibiotics and steroids needed to
tackle the infection.
This time was the worst time of our lives. This time our little man was in pain and
uncomfortable and had a lot of horrible things happening to him. My husband was incredibly
strong for me, I was an emotional wreck; with prolonged worry and stress, a serious lack of sleep
and fear over many weeks. We got through. Ben’s consultant was there daily to take the
lead and help us understand the small improvements we saw with growing relief.
When Ben was released, he was still on IV antibiotics as an outpatient for a bit longer, but
our little Ben was finally back, smiling and pain-free.
It took Ben about 6 months to recover fully though. The huge impact of meningitis
means we will never know how he would have recovered from the Chiari surgery alone. He
went back to school after a few months, as a confident youngest of 3 boys, we spent far
more time worrying about him, than he did about anything at all. However, he did get tired
quickly and certainly didn’t hit full throttle 4-year-old speed until 6 months later.
Fast forward 2 years and a pandemic later. Ben barely remembers his time in hospital. His
best days involve school and football, and he rides his bike every day to school. He is a
normal 5-year-old, with a scar above his neck. Other kids ask him about it, and he says, ‘my
brain was too big, so they had to take some away’.

There is probably more emotional scarring for us, his parents, it is very tough to let him be
normal. We fret every time he has a headache or hits his head, and it has taken many,
many months to relax. Even now writing this, we worry that we may be jinxing our luck, but
as we glance up to see our beautiful children playing in the garden, we couldn’t be prouder
of us all for staying strong, gritting our teeth, and getting through it, to come out the other
side Chiari Strong.

Many thanks to the NHS, his consultant, the nurses and staff on the acute care ward for
taking care of all of us around the clock, but especially our little boy with the big brain.

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