My little boy will never grow any bigger
Monika Marrow, 31, from Essex, had so much planned for her little boy. But he will never be able to do any of it...
All mums dream of the person their child will one day grow up to be. They look forward to milestones – his first steps, first words, his first day at school, going to university and his first job – and one day his own wedding.
For my baby, though, these milestones will never come.
‘Enjoy it while you can,’ other mums say, referring to the magical newborn phase. ‘They grow so fast.’ Don’t get me wrong – when Freddie arrived in June 2017, I loved every moment of that phase – his tiny hands and feet, the smell of new life in his wispy blond hair.
My husband Tony, 28, and I were overjoyed, and our son Frankie, then three, was so excited about being a brother.
Freddie completed our family and we were so happy.
But what I didn’t know then was that Freddie would never grow out of this phase, never learn to crawl, walk, or talk.
‘He looks just like you,’ Tony had smiled proudly when he came out screaming at Basildon Hospital.
As we expected, adjusting to life with a newborn and a toddler was hard – but we were so happy.
Nothing could burst our bubble – or so we thought.
When he was around two months old, I started to notice that Freddie would never really look at me.
Instead, whenever I held him on my lap or lay him down to change him, it was as if he was looking through me.
And at eight weeks, he stopped drinking his milk.
Each time I fed him, milk would come splurting back out of his tiny body, and he’d be crying non-stop.
Worried it could be acid reflux, I took him to A&E, where doctors said he could have a milk allergy.
They gave us a dairy-free formula to try, as well as acid reflux medication, but nothing worked.
Freddie would be sick every time I fed him.
And while other babies his age would start to make eye contact and learn how to grab for things, little Freddie was doing none of that.
I was getting more and more worried about him.
With time, Freddie started crying all the time, as if he was in constant pain. It broke my heart.
‘Is it because he’s not getting enough food?’ I asked Tony.
That October, I took Freddie to see a paediatrician at Queen’s Hospital in Romford.
Carefully wrapping a tape measure around his head, she wrote down some numbers, then frowned.
‘What is it?’ I asked. ‘Freddie has microcephaly,’ she told me.
Literally meaning ‘small head’, this rare condition meant Freddie’s brain was smaller than normal – which meant that his development would be delayed.
It also meant his little muscles were in pain all the time, which explained the constant crying.
Holding him in my arms, tears welled up in my eyes.
‘My poor baby,’ I cried, snuffling my nose into his neck.
It was a massive blow – we’d gone to the appointment hoping to find a solution to his acid reflux, but left knowing there was something seriously wrong with our baby.
Freddie soon started physiotherapy to help strengthen his muscles, but even so, my poor baby seemed to always be in pain.
It was exhausting, but I vowed to do anything I could to help my boy.
Little did I know, things were about to get worse.
The following June, we were referred to a specialist at
Freddie was in constant pain
London’s Great Ormond Street Hospital, where Freddie had an MRI scan, a lumbar puncture and genetic testing.
And we soon found out that Freddie had much more than just a small brain.
‘He has something called pontocerebellar hypoplasia,’ the specialist told us.
It was a rare genetic disorder affecting the development of the brain – and it meant that Freddie would never grow.
As the specialist explained what this would mean, I clung to my baby and wept.
‘Freddie will never grow up. He will forever be the physical and mental age of a threemonth-old baby,’ he said.
He will never be able to sit up, crawl, walk, or talk – and there’s no cure.
‘He probably won’t live past puberty,’ we were told, shattering our lives to pieces.
Back home, after settling him in his cot, I just sat there, watching the air go in and out of his tiny lungs.
I closed my eyes and saw him crawling across the living room floor, toddling along towards me, playing football with his brother, performing in a school play, waving us off as he left for university, and kissing me on the cheek before saying his vows to a beautiful bride.
I opened my eyes and saw my sleeping baby, and all of those milestones were ripped out of my chest in an instant.
He’ll always be like this, I thought, devastated.
After that, though, there was nothing else we could do but simply carry on.
As Frankie grew and made friends at school, Freddie was always on my hip – it was an endless cycle of nappy changes and night feeds that Tony and I would never escape from.
Between me and Tony, we had to make sure we had enough time to be there for him, to be parents to Frankie, tidy the house, do the washing up and prepare dinner – and it wasn’t easy.
And because of his muscle problems, Freddie needed to be held constantly – he’d scream uncontrollably otherwise.
A few months later, we enrolled Freddie in a specialist nursery.
It was great spending time with other parents, and in one session, Freddie was introduced to a hydropool – a specialist pool with warm water.
Carefully placing him in a rubber ring, I expected him to start screaming.
But something about the warm water calmed him down right away, bringing a smile to his face that I rarely saw.
In the end, he floated around in there for over two hours!
I took him to the pool a few times a week after that, and Freddie had a ball every time, splashing about, grinning from ear to ear, and warming my heart each time with his adorable little giggles.
It gave me hope for the future – Freddie may never grow up, but he’s still my gorgeous son who I adore.
He’s now three years old, and we have our good days and bad days.
Sometimes I find myself grieving for the life he would have – should have – had.
It’s really hard for Frankie, too.
He’s now five, and although he adores his little brother, he also has needs – he has his own life to live.
The hardest days are when Freddie is in pain and there’s nothing I can do.
He can’t tell me what’s wrong or where it hurts.
I’m his mum, and all I want to do is take it away from him.
Sometimes he’ll cry non-stop for over 24 hours, and I often break down. Sometimes I want to give up. But on other days, when he’s not in pain, Freddie is such a happy baby.
He adores his big brother, loves people, and is quite the little attention seeker.
He’s developed a little personality – a rather cheeky one at that – and when he smiles, it makes it all worth it.
We’ve even bought a hot tub for our garden, and we spend a lot of time in there, Freddie floating around happily in his rubber ring as if he doesn’t have a care in the world.
As a mum, I’ve had to put my life on hold.
My baby will never grow up. I’ve come to terms with it, but my heart breaks for him every day.
But all it takes is one of Freddie’s cheeky little grins to get me going again.
We don’t know how long we have with him, but we’ve vowed to make happy memories as a family for as long as we can.
We enjoy days out, holidays, and of course, the hot tub.
This may not be the life I imagined for my little boy, but whatever happens, Freddie will always be so loved, my baby forever.