My smiley baby boy died after we noticed a squint – we just thought he needed glasses
COMEDIAN and America’s Got Talent host Nick Cannon announced the death of his beloved five-month-old son Zen earlier this month, who died after being diagnosed with a brain tumour.
It’s a tragic, heart-breaking story that is all too familiar to Amy Hall, 29, and her husband Matt, 34, whose son Rory died aged seven-months in January 2020.
Rory was “the most chilled baby you've ever come across,” says Amy, a fundraiser for .
“He was so calm, so sure of himself, so sunny and smiley. Everything we needed our first baby to be.”
Rory was born in May 2019, and in his first few months, Amy and Matt went adventuring outdoors with him, exploring Scotland in a campervan and staying with family in the stunning Lake District, where the couple are now based.
“We're so glad that we did now,” says Amy.
“He was our best friend. It was like we were always supposed to have this third person that was a part of our family.”
It was coming up to Rory’s four-month birthday though, that they noticed his right eye had begun to turn inwards and he was having to look left to compensate.
MOST READ IN HEALTH
At first Amy and Matt assumed it was just a squint, or a lazy eye, something many young children have and grow out of, that can be treated quite easily.
Their GP wasn’t convinced though and referred Rory to Bristol Eye Hospital, just to be sure.
It was there that specialists said they didn’t think it was an eye problem and referred Rory for an emergency MRI.
“And that's when we had the brain tumour diagnosis,” says Amy.
It was devastating news that she and Matt were completely unprepared for.
“It didn't even cross my mind.
“We thought [a squint] might impact his development a bit; maybe he would have to have glasses, but we never thought it'd be such a life changing diagnosis as a brain tumour.
“Our world just totally fell apart,” she says, adding: “You just don’t think it will be you.”
Both “pragmatic people” Amy and Matt - who are supporting ’s campaign to raise parents’ awareness of brain tumour symptoms in children - sat down with Rory’s doctors to work out what could be done.
AGONISING WAIT
The first step was a 10-hour operation to remove the tumour.
Amy, who was breastfeeding Rory at the time, remembers it as “the most excruciating day”.
She and Matt, now a project manager for , were unable to sit down or eat, they just kept walking, trying to find some comfort and distraction in moving.
“We just needed to keep going; needed to not stop and think about it.”
Rory woke up from surgery “really, really groggy” and for the first 24 hours was quite out of it, due to the sedation.
He was also rigged up to lots of wires and his head was bandaged, while one side of his face was swollen from laying on it for so long.
“He didn't quite look like our baby,” says Amy. “We couldn't pick him up at that point, which again, was excruciating, because that's the only thing you want - to scoop your baby up and cuddle them.”
After around three days, Amy was finally able to hold Rory again, and it felt like “magic”.
“It was like holding your baby for the first time all over again.”
Rory spent a week in hospital recovering, followed by a week at home, and then it was back to the hospital to start chemotherapy - a biopsy had revealed Rory’s tumour was an aggressive, cancerous medulloblastoma.
“The chemotherapy was brutal,” says Amy, who is keen to highlight the lack of treatment options for medulloblastoma.
What to look out for
Possible symptoms of brain tumours to look out for in under-fives, highlighted by The Brain Tumour Charity’s HeadSmart campaign:
- Persistent/recurrent vomiting
- Balance coordination/walking problems
- Abnormal eye movements or suspected loss of vision *
- Behaviour change, particularly lethargy
- Fits or seizures (not with a fever)
- Abnormal head position such as a wry neck, head tilt or stiff neck *
- Increased head circumference (crossing centiles)
One symptom: see your GP
Two symptoms: ask your GP for an urgent referral
*Starred symptoms:
- See your GP and an optician
- Symptoms vary across ages groups: babies (under-fives); children (5-11) and teens (12-18)
Visit for more information.
Parents or carers living with the impact of their child’s diagnosis can call the Support Line on 0808 800 0004 or email [email protected].
“There's no reliable cure, which is not good enough, and all of the treatments they give children, and babies especially, are just so brutal and toxic,” she explains.
“[With] chemotherapy, you're watching someone poison your child - for the best reasons - and you know it's their only chance of fighting this tumour, but you just feel so helpless.”
Throughout chemo, despite being knocked-out energywise, Rory still loved cuddles.
“He was a proper koala bear,” says Amy, but he began to decline after developing veno-occlusive disease, a condition that tends to affect the liver and can be a complication of chemotherapy.
Rory was admitted to intensive care on Christmas Day, and the family were living minute-to-minute.
“It's really hard to watch as a parent because your baby's just fading away in front of your eyes,” says Amy.
“You're just willing with every fibre of your being to just get him out of there and make it better.”
At one point Rory was transferred from a cot to a bed so Matt and Amy could get in with him.
“I remember curling myself up around him and holding his liver, which was the real problem, and thinking, ‘Imagine if I could just transmit health through my hands into you. If I could just emit that into your body’,” remembers Amy.
“We're so lucky we had the support of each other the whole time.
“I cannot imagine what families going through this with COVID restrictions is like.”
BITTERSWEET GOODBYE
Rory improved slightly in the new year, but began to decline again, and finally suffered an inoperable pneumothorax [air pocket] in his lungs.
His consultants said there was nothing left they could do and warned if they kept Rory going, it was likely he’d suffer a cardiac arrest.
“It felt like throughout Rory's treatment he'd been so clear about what he wanted to do.
“He was such a self-assured, loved baby and it suddenly felt like he was just going, ‘Mum and Dad, I can't do this anymore,’” recalls Amy.
They were able to take casts of Rory’s hands and feet and a lock of his hair.
They sang to him and Amy read from The House At Pooh Corner by A. A. Milne, and kept Rory’s toys close, including a fox toy that played piano music, which they played as Rory’s life support was switched off.
“It meant we could have the last moments we really needed,” says Amy.
They lay cuddling him for a while before washing him and dress him in one of their favourite baby grows.
“It sounds horrendous and it is horrendous,” she says, “but it was also really beautiful.”
Christmas is understandably a tough time for Matt and Amy, however “it's made so much easier by the fact we now have Rory's little brother Finn, who's an absolute delight.”
“He helps with the grief but equally, there's always an absence,” says Amy.
Finn, 1, has Rory’s strong will but is more “high-octane”, she says with a laugh, adding: “He keeps us going.”
Amy’s advice to other families dealing with a brain tumour diagnosis is to “maintain hope and positivity.”
“I know we're the ending that nobody wants to hear, but it doesn't mean we're the only ending,” she says, encouraging parents to keep fighting for their child, whatever the odds.
She also says to “trust your instincts. If you feel like something is wrong, then make sure you're listened to, because time is so crucial.
“It can make such a difference to the outcome for your child.”
Almost two years on, Matt and Amy try to do something for Rory every single day.
They talk and think about him, and have pictures up everywhere.
She’s hopeful ‘Rory’ will be Finn’s first word.
“It’s really short. If you want to do something, just go do it,” says Amy on how Rory has affected her outlook on life.
“We're trying to bring up Finn that way,” she says, but acknowledges it’s hard to balance the neurosis that comes with a cancer diagnosis of a child, with “throwing caution to the wind”.
“Hold family close,” she adds. “There's no time for arguments, there's no time for any hard feelings.
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“This is your life, it could be over before you know it.”
For support and information on brain tumour diagnosis in children, visit .
