Don’t hurt me, Mummy!
The only way to help my boy was to cause him pain
Cradling my newborn Clayton, in hospital, I placed a white cotton baby bonnet on his head. The hat was newborn size. Should’ve fitted perfectly.
So why was it so tight?
My husband George, now 49, nipped home to fetch a size 6-9 months hat.
‘Just right,’ I said, pulling it on his head.
Clayton was only a few hours old, but at 9lb 1oz was already on the chunky side…
‘It’s not surprising his
head’s big, too,’ I shrugged.
We took him home to meet his sisters Leah, now 17, and Laurie, now 14.
‘He’s gorgeous, Mum!’ they cooed.
We quickly settled into family life.
Clayton was a happy, contented little soul.
But after a few days, I noticed the sides of his head looked flat and his forehead looked swollen, like a bubble.
Then the back of his head began to protrude.
‘His bonce looks like a rugby ball,’ I told George when Clayton was 4 weeks old.
Clayton had now become unsettled, too, always crying.
‘I’m sure something’s wrong,’ I told the GP, at our six-week check in March 2013.
He examined him. And then said, ‘I suspect Clayton has craniosynostosis.’
It is a birth defect, causing parts of the skull to fuse, preventing the brain from growing properly and causing painful pressure and fluid on the brain.
It was such a shock. George and I were still reeling as Clayton was referred for scans at Royal Victoria Infirmary, which confirmed he had sagittal craniosynostosis.
His skull bones had fused at the front and back.
He didn’t have the usual newborn ‘soft spot’ on top of his head, either.
Within another fortnight, we were at Birmingham Children’s Hospital.
The specialist said that, left untreated, Clayton’s condition could cause long-term health issues.
Increased pain, pressure on the brain.
‘He’ll need surgery before he’s 1, to reshape his skull and give his brain room to grow,’ he advised.
The op carried risks – eyesight problems, epilepsy, brain damage and learning delay.
As Clayton wriggled in my arms, I felt overwhelmed.
And so frightened for my little boy.
Over the next few months, his symptoms got worse.
His skull still swelling, growing more misshapen. He’d cry, grab his head in pain.
I was beside myself.
We decided that, despite the risks, surgery was the best solution.
Our brave boy was 8 months old when he underwent the five-hour op.
Surgeons at Birmingham Children’s Hospital sliced into the top of his skull and reshaped it, cutting parts which were fused.
Then the pieces were fitted back together, like a jigsaw, to give his brain growing room. Clayton was left with an angry-looking wound zigzagging across his scalp.
But the op was a success.
After 48 hours in Intensive Care, and another six days on a ward, we brought him home. Clayton was soon happily crawling around. ‘Clever boy!’ I beamed when he took his first steps at 11 months. But our happiness was short-lived. Further tests showed Clayton had an unrelated condition called kidney reflux, causing frequent urine infections.
In October 2014, he had
one kidney removed, followed by surgery on his feet, as his toe bones were growing incorrectly, in September 2015. It was relentless. Especially when, in April 2016 his skull began swelling again.
‘My head hurts, Mummy,’ he sobbed, clutching his scalp.
Please, no, I panicked.
Back at Birmingham Children’s Hospital, medics confirmed the back of Clayton’s skull had re-fused, restricting brain growth and causing more pressure.
‘My poor boy,’
I wept as he was wheeled back into surgery in September 2016, to have his skull reshaped again.
This time, surgeons fitted two little metal plates on either side of his skull, attached to rods with tiny screws.
Before we took him home, the doctors gave me an important job to do.
Twice a day, I had to twist the screws 1mm, to tighten the plates.
They would gradually pull the fused part of Clayton’s
skull away from his brain.
‘I can manage that,’
I winced, trying not to feel scared.
What if I damaged his brain? My hands were trembling as I tightened the screws the first time. Thankfully, Clayton barely noticed.
But as the screws grew tighter over the next few days, and the back of his skull began to shift, he’d yelp in pain.
‘Don’t do it, Mummy,’ he’d sob, pushing me away. ‘It hurts.’
Heartbreaking.
Biting back tears, I told myself I was following doctor’s orders.
This was in Clayton’s best interests, but it didn’t make it easier.
Especially when he’d refuse to cuddle me afterwards.
George was upset, too – hated seeing our boy in pain.
I had to turn the screws twice a day for eight weeks.
But, slowly, we saw a difference in his skull shape, and his headaches eased.
Still, the doctors decided to leave the rods a while longer, to ensure they were doing their job.
I no longer had to twist the screws, but the rods protruded from his head and I watched him constantly. I couldn’t let him run around the playground or jump on bouncy castles.
Finally, in January 2017, the specialist at Birmingham Children’s Hospital had good news.
The treatment had worked! ‘All those tears were worth it,’ I smiled as the rods were finally removed.
Now 6, Clayton has some learning delays and eye problems due to surgery.
He’s had genetic tests and doctors say all his health issues are unrelated. He’s one unlucky little boy. But nothing holds him back. He loves school, has loads of mates.
He’s even taken up karate! His scar is still visible through his short hair, so people sometimes stare. But he loves showing it off. ‘I’m proud of it,’ he beams. And we’re proud to bits of him.
Biting back tears, I knew I was following doctor’s orders