Wait and see
Sam Walton, 34, from Dorset, took on an extreme task to get her son to America.
Sipping on my cup of tea, another intense, sharp pain shot through my stomach. ‘Ahh,’ I squirmed, trying to get comfortable. ‘Is everything OK?’ my friend asked.
At nearly 31-weeks pregnant, my unborn son was putting me through my paces.
‘If I didn’t know any better, I’d say I was having contractions,’ I laughed.
As a first-time mum, I didn’t know what these pains were, but as the afternoon went on, they continued to progress.
Each more painful than the last, my partner Ben, 36, and I made the decision to go to the hospital that evening.
‘Let’s just get it checked out,’ Ben soothed.
Only, when we arrived, my throwaway comment about having contractions turned out to be true.
‘You’re in the early stages of labour,’ the doctor told me.
I couldn’t understand what was happening.
I’d had the perfect pregnancy.
Why was my baby coming nearly nine weeks early?
It didn’t make sense, and despite doctors’ attempts to slow it down, little Chester arrived on 17 March 2016, weighing just 3lb 7oz.
There was no explanation as to what had caused the premature labour, but it all happened so quick.
My birth wasn’t how we’d imagined it at all.
I didn’t get that precious first cuddle or feed.
Instead, doctors wrapped Chester in what looked like a plastic bag and whisked him to the Neonatal ICU. And there he remained for 50 long days.
Although Chester was nine weeks early, he was doing well.
He was growing every day and his stats were looking positively reassuring.
As he was nine weeks premature, he needed regular brain scans, but the first two came back all clear.
‘He’s a fighter,’ Ben and I smiled at each other.
For the next 50 days, we were back and forth to the hospital daily and just couldn’t wait to bring him home.
It was all looking so positive, but he needed a final brain scan before he could be discharged.
By this point, Ben had returned to work, so I was by myself at the hospital.
‘Let me know how it goes,’ he told me that morning.
The first two scans had come back normal, so we were expecting the same with this.
Only, I was about to be dealt the shock of my life.
‘We’ve noticed he has damage to the white matters of his brain,’ the doctor told me. ‘It’s the part that sends signals to and from the body.’
I couldn’t believe what I was hearing.
I felt like the world had swallowed me up.
What did this mean? How had it happened?
As questions whirled around my brain, the doctors were discussing the possible outcomes for Chester.
‘It could lead to cerebral palsy,’ I heard one say.
Staring up in shock, I felt violently sick.
Although I knew we’d love Chester no matter what, I didn’t want it to be true.
Breaking down on the phone to Ben, he rushed to the hospital. ‘We may not know for sure for a couple of years,’ the consultant told us. ‘We’ll start early intervention, but we’ll just have to wait and see.’
I didn’t know what to think or feel and not long later, Chester was discharged.
Although we were so pleased to be home, it was a dark time.
We didn’t know what the brain damage would mean for Chester’s development, and he was clearly in distress.
Although he slept through the night, when he was awake, he would constantly cry.
As a first-time mum, I’d imagined showing him off to our friends and family as they popped over for a cuppa. Only, our life was in turmoil. Once a month we had to go for physio and a check-up.
It felt like a waiting game to see whether Chester had cerebral palsy, but when he was just three-months-old, it was confirmed.
‘He has quadriplegic cerebral palsy,’ the consultant told us. ‘I’m afraid it’s in his arms and legs.’
Bawling my eyes out, I couldn’t handle it.
We loved Chester, but I almost went into a state of mourning.
I grieved for the life we thought we’d have with him.
Ben and I would give
Chester the best chance in life, but I knew it would be filled with hospital appointments and physio.
We didn’t know what it meant for his future and I wondered if he’d ever live an independent life.
As well as his limbs, it could affect the likes of his speech.
‘We’ll do everything we can,’ Ben soothed that night. And he was right.
We spent hours researching, and we booked him into private physio once a week.
Whilst Ben was working, I took Chester swimming and enrolled him in as many baby activities as possible.
Life was tough for all of us and Chester’s development was severely behind.
He couldn’t lift his head or roll over. I worried if he ever
We’d love Chester no matter what
would be able to.
In those first few years, we almost went into pilot mode.
I went back to work for my own mental health, but Chester needed constant therapy and physio.
We took him to as many activities as we could, and we just did what we had to do.
It was all worth it and when he was two, he learnt to roll, before crawling at three.
We adored Chester and his little smile made it all worth it, but we knew we needed more.
In the world of cerebral palsy, selective dorsal rhizotomy (SDR) surgery is considered one of the best in the world.
The only problem, it’s not available to all children in the UK, meaning America could be the only option. For the first few years of Chester’s life, although we knew of it, we hadn’t seriously considered it.
Only, by the age of four, Ben and I realised it was his best chance in life.
He’d started to speak a little and he was really coming into his own.
‘Digger!’ he would smile, pointing to his favourite toys. He was even beginning to walk a little with a frame.
Although his legs scissored, and he would trip over a lot.
We just wanted the best for him, and we knew the surgery could help.
‘Let’s look into it,’ we agreed. Sadly, little Chester didn’t qualify for the surgery in the UK, so we knew we’d have to fly to America.
But we’d need £100,000 in order to do so.
‘Other families have done it,’ I said to Ben. ‘Why can’t we?’
Thankfully,
Chester qualified for the surgery in the US, so we began brainstorming ideas.
We wanted to hold galas and balls so we could raise as much money as possible.
Only, when the coronavirus struck, that all came crashing down in seconds.
‘How are we ever going to raise the money now?’ I fretted.
We knew people were financially struggling, but we needed the money.
So, we held online raffles and virtual events to bring a bit of cash in.
However, we knew we needed to up the ante.
And that’s when we settled on a three-day run from Dorset to Bristol.
It was the equivalent of three marathons in three days, but it was all for Chester.
We announced the #Charge4chester and soon donations came flooding in.
Complete strangers were sending us large sums of money and we were so grateful.
In September 2020, 12 of us took on the run and we raised an incredible £50,000. We were doing everything we could and soon enough, we had the funds we needed to get Chester to the States. In March of this year, Chester had the surgery, and it went so well.
It was gruelling and it involved cutting into his spine to sever any nerves that had spasticity.
He was incredibly weak afterwards and needed three weeks of intense therapy to get him back to base line. It was like restarting a computer. However, he never complained.
It was hard work, but he did everything that was asked of him and more. We were so proud of him and we knew straight away it would improve his life. We’re now back home and we’re continuing his rehab daily.
Despite only having the surgery a short while ago, we’ve seen so many improvements already. Chester can now walk without scissoring his legs with the help of a frame and even his speech has improved.
He’s now in a special needs school and he is thriving. Chester will need physio four times a week for the next two years, and we’ll have to pay for it ourselves.
We’re now fundraising for that, as we just want Chester to have the best life possible. Of course we worry about his independence growing up, but Chester is a fantastic kid. Despite the pain and discomfort, he doesn’t complain at all.
To him, he’s just like every other kid his age.
He loves cars and watching Paw Patrol.
When he was first diagnosed, we did worry about him. Neither of us knew what our lives would look or feel like. Every child with cerebral palsy is different. It’s been one heck of a journey, but Chester is worth every single second.
●to donate, please visit: Just Giving, Cheers4chester