Mother reveals how firstborn died of brain cancer within a year of birth

A mother whose son died of a brain tumour at just seven-and-a-half months has revealed how hope was brought back into their lives when she welcomed another baby boy less than a year after his death. 

Amy Walsh, 28, and fiancé Matt Hall, 33, from Bristol, welcomed Rory in May 2019 and ‘immediately loved’ being parents. 

‘Right from the start, Rory was a very calm baby,’ said Amy. ‘It’s like he came into the world an expert on life and to teach us to be parents and what that meant.’

However in September, when Rory was four months old, Amy and Matt noticed their son had started to develop a squint. A month later, they took him for an eye test and were referred to the hospital for an MRI that revealed a brain tumour.  

After months bravely fighting the disease in hospital, Rory lost his battle with cancer in January 2020, leaving Amy and Matt devastated. 

But the couple told how their son had given them the ‘gift’ of wanting to become parents again and ‘hope’ returned to their lives with the birth of their son Finley in November.

Amy Walsh, 28, from Bristol, revealed how her seven-month-old baby Rory died from brain cancer in January 2020. Pictured, Amy with partner Matt Hall, 33, and Rory on a family day out

In November 2019, the couple discovered Rory had an aggressive medulloblastoma. Pictured, Rory after starting his second round of chemotherapy, just before Christmas

But despite their tragedy, the couple have found joy once again after the birth of their second child Finley in November. Pictured, Amy at home with Finley

‘It is such a mixture of sorrow and joy. Finley can never replace Rory – we’ll miss him for ever. We’ll never stop aching for him, but his brother gives us hope and a new beginning,’ she said. 

‘Rory taught us how to be parents and experience a love like no other. His final gift is making us want that again.’ 

Now, to mark Brain Tumour Awareness Month (BTAM) throughout March, Amy and Matt are sharing their story through The Brain Tumour Charity to back its Voices For Change campaign.   

They are also supporting its HeadSmart campaign to raise awareness of children’s brain tumour symptoms and reduce diagnosis time.

After Rory was born in May 2019 – ‘a happy surprise’ – Amy and Matt, who have been together for four years after meeting in a theatre production, immediately loved being parents.

The couple first noticed that there was something wrong with their son’s eyes when he was four months old. 

‘We noticed that Rory had begun to look a bit cross-eyed,’ said Amy. ‘At first, we weren’t that worried and just thought he had a squint or lazy eye.’

But when his right eye seemed to be ‘stuck’ a few weeks later, Amy took him to the GP.

‘She said there was nothing obviously wrong with Rory’s eye but, to be on the safe side, she referred him to Bristol Eye Hospital the following week,’ said Amy.

Rory was born in May 2019 and the couple called their son a ‘happy surprise’ and that they immediately loved being parents. Pictured, Rory as a newborn with mum Amy

Amy and Matt are pictured with their son Finley in hospital, who was born 11 months after they lost his brother

‘Rory was examined by various ophthalmologists and then a consultant said “not to panic” but that we should go straight to Bristol Children’s Hospital for an urgent MRI scan.

‘When we got there, it was busy and we were told to go home and come back next morning for Rory’s MRI. The first thing we did was google what could be causing Rory’s “stuck” eye.

‘Neither of us wanted to say it out loud, but we both thought the same thing, “it could be a brain tumour”.’

When they took Rory back to hospital the following morning, the consultant confirmed the worst.

‘We were trying to prepare ourselves for the worst but clinging on to hope at the same time,’ said Amy. ‘We kept thinking Rory won’t have a brain tumour – not our son.’  

But they had hope when doctors told them they thought the tumour wasn’t cancerous.

‘Our world had fallen apart, but Matt and I are both very practical so we thought, “what can we do about this?” said Amy.

On 8 November 2019, Rory had a 10-hour operation to remove the tumour.

‘Leaving him knowing there was a possibility he may not make it through surgery was so hard,’ said Amy. ‘I just said, “I love you, be good” and forced myself to walk out.

‘Those 10 hours seemed like an eternity, I don’t know how we got through them.’ 

Amy said she had ‘never been happier to see anyone’ than when her young son came out of surgery.   

‘We were overwhelmed with relief and surprised that Rory seemed quite awake,’ she said. 

But their relief was short-lived when they got the biopsy results five days later. They revealed that Rory’s tumour was cancerous, an aggressive medulloblastoma.  

‘From the moment I heard the word “cancer”. I didn’t take in another single word our consultant said,’ said Amy.

‘I just nodded and cuddled Rory, holding him closer. Afterwards, I had to get the nurse to repeat the whole conversation. Suddenly, everything felt far more dangerous and unpredictable.’

Rory started his chemotherapy on November 25, 2019. He tolerated it quite well and Amy and Matt stayed in hospital with him.

But when Rory started his second round of chemotherapy, just before that Christmas, it was clear that the side effects of his treatment were becoming more complex.

He wasn’t well enough to come home for the special festive celebration Amy and Matt had planned.

‘He was the first grandchild on both sides of the family and I was so excited we were all going to get together, even though it wasn’t the ‘first Christmas’ we’d imagined for our baby,’ said Amy.

The parents took Rory, pictured smiling at two months with dad Matt, to the GP in October 2019 when his right eye seemed to be ‘stuck’ 

The couple’s bliss was punctured in September 2019 when Rory was four months old. Pictured, Rory, a few days after his cancer diagnosis

Matt says that Rory (pictured with his dad in hospital) taught him and partner Amy to be parents

‘When that was ruled out, I hoped it may be the three of us at home, but we ended up spending Christmas Day in hospital.’

On Boxing Day 2019, Rory was admitted to the children’s intensive care unit with veno-occlusive disease (VOD) which affects the liver, often caused by high doses of chemotherapy, but unexpected with Rory’s treatment regime.

They were told his condition was critical, but the couple ‘always took our cue’ from Rory.

‘If he seemed to be OK and fighting, we fought for him with every fibre of our being,’ said Amy. ‘It was up to Rory and, at that point, we still thought he’d be OK.’

In the New Year, Rory’s condition seemed to improve.

‘Rory was a fighter, and always had a calm determination about him. We couldn’t have been prouder of his bravery,’ said Amy.

‘One of the nurses sent us out for a meal as we’d hardly left Rory’s bedside for weeks. In the early hours, we were woken by a phone call from the intensive care unit and a nurse said, “we think you’d better get downstairs”.’

Rory was examined by various ophthalmologists and then sent to Bristol Children’s Hospital for an urgent MRI scan after the parents noticed a squint in his right eye

When they took Rory back to hospital the following morning, the consultant confirmed they Rory had a brain tumour. Pictured, Rory in hospital after undergoing chemotherapy 

On November 8, 2019, Rory had a 10-hour operation to remove the tumour. Pictured, Matt cuddling Rory in hospital after his brain surgery

The couple had biopsy results five days later revealing Rory’s tumour an aggressive medulloblastoma. Pictured, Amy cuddling Rory after surgery

Rory started his chemotherapy on November 25, 2019. He tolerated it quite well and Amy and Matt stayed in hospital with him . Pictured, Rory exhausted from chemo having a cuddle from dad Matt

The couple rushed back to Rory’s bedside. The clinical team, who ‘worked tremendously hard’ for Rory throughout his illness, discussed the possibility that he might not make it out of intensive care.

‘We spent the next few days desperately clinging on to the hope that Rory would turn a corner – that he might be the child to defy the odds – but in our heart of hearts, we knew things weren’t looking hopeful,’ said Amy.

A few agonising days later, Amy and Matt knew what their son – ventilated on 100 per cent oxygen, with machines and drugs supporting his kidneys and heart – was telling them.

‘He just looked different, something had changed,’ said Amy. ‘That’s when I thought, “he can’t do this anymore”.

‘The doctors, who were wonderful and had guided us from day one with such compassion, told us that as Rory continued to deteriorate, they were quickly running out of options and there was a chance he would go into cardiac arrest.

‘If this had to be the end, we wanted it to be dignified and peaceful for Rory.’

Just as the couple had brought their son into the world with love, they ensured he left the world embraced in love.

‘Our last 10 hours with him were as beautiful as they could be – we feel blessed that we have some comforting memories to look back on,’ said Amy.

Rory started his second round of chemotherapy, just before that Christmas. It was clear that the side effects of his treatment were becoming more complex

On Boxing Day 2019, Rory was admitted to the children’s intensive care unit with veno-occlusive disease (VOD) which affects the liver, often caused by high doses of chemotherapy, but unexpected with Rory’s treatment regime. Pictured, Amy and Rory in ICU

Determined Amy and Matt would be able to cradle their son in his last moments, hospital staff moved Rory from his cot to a full-sized bed.

‘It took several people to move him because of all the wires and medical equipment he was attached to,’ said Amy.

‘It meant Matt and I could be close to our son in his last hours. Part of me thought I could heal him in some way; that my love and touch would somehow make him better.’

The couple took Rory’s foot and handprints and a lock of his hair; and Amy read the final story of The House at Pooh Corner to him.

‘In Rory’s final moments, we were curled round him with one of his hands on Matt’s face and one on my breast,’ said Amy. ‘He just slipped away. At that moment, our hearts were so broken, but there was peace and calm.’

Then the couple spent an hour washing and dressing Rory for the last time, telling their son they’d always love him.

‘We brushed his hair and dressed him in a babygro and hat my mum had knitted for him,’ said Amy. ‘It began our long journey of healing.’

Then they had to say goodbye.

Amy and Matt revealed they had always had the intended to try for another baby soon after having Rory. Pictured, Amy seven months pregnant with Rory’s brother Finley 

The couple started trying for another baby within weeks after Rory died on January 11, 2020.. Pictured, Matt and Finley at home

Rory, pictured on a walk with mum Amy, lit up his parents’ life and the pair are sharing their story through The Brain Tumour Charity to back its Voices For Change call

Matt, pictured on a walk with Finley, says he feels blessed to be Rory and Finley’s dad

‘The worst bit was having to go home without him, something no parent should ever have to do’ said Amy. ‘But it really helped that we were there at the moment he died – we had to be there.’

The couple started trying for another baby within weeks after Rory died on January 11, 2020.

‘We didn’t really have to make a decision – it felt right,’ said Amy.

‘Of course we asked ourselves if it was the ‘right’ time as we are grieving for Rory and talked it through in counselling.

‘But we’re never not going to be grieving for Rory and now it means so much to us that our sons lived in the same year.’

Touchingly, Amy knew she was pregnant again that Mother’s Day when she felt implantation pain, which she’d also experienced with Rory.

‘While I was pregnant with Finley, I had a lot of very complex feelings,’ she said. ‘I had flashbacks of being pregnant with Rory as it had been so recent.’

Cruelly, they had lost that innocence of first-time parents.

‘We knew that the worst could – and had – happened,’ said Amy.

‘At times, it was difficult and painful to distinguish between my grief and my anxiety. I was frightened about something going wrong during the pregnancy and that this baby would get cancer, too.

‘Losing Rory has been a huge strain on our mental health and we had counselling separately.

‘We stopped for a while until I was seven months pregnant with Finley and started therapy together.’

Grief and hope went hand-in-hand.

‘In the last few weeks of my pregnancy, I was still terribly anxious but started allowing myself to feel excited, too,’ said Amy. ‘I couldn’t wait to meet my baby.’

Now they are adjusting to life with Finley while mourning Rory.

‘Most of Finley’s things were Rory’s and it’s bittersweet to see him sleeping in the Moses basket where we kept Rory’s ashes until the day we brought his brother home, and playing with his toys,’ said Amy.

‘When people ask about Finley, “is he your first child?” I always tell them about Rory. How can I deny him?’

And the couple have already started telling Finley about his big brother.

‘We have photos of Rory on the walls and a big photo collage of the boys next to the changing table,’ said Amy.

‘We tell Finley all about him and who knows how much he’s taking in at the moment, but we want Rory to be part of his life right from the beginning.’

Despite their heartache, Amy and Matt have made a conscious choice to be happy.

‘We know the very worst can happen – the death of your child – but that you can still celebrate a new baby in the midst of your grief,’ said Amy, who writes blog Team Rory.  

‘We want to give people hope that you can still feel joy in the most painful of times.’

Matt said: ‘I miss Rory every day – he was such a great little person. From the second he was born, I felt like I’d always known him and that we’d been waiting for him.

‘He taught us how to be parents and how to love a child. Finley has brought hope back into our lives.’

Sarah Lindsell, The Brain Tumour Charity’s chief executive, said: ‘We are so touched by Rory’s story and incredibly grateful Amy and Matt are sharing it to help raise awareness about brain tumours – which kills more children and under-40s in the UK than any other cancer.

‘Despite that, over £500million is spent on cancer research in the UK every year, yet less than 3 per cent is spent on brain tumours.

‘Throughout Brain Tumour Awareness Month, we are urging our wonderful supporters, like Amy and Matt, to share their stories in our Voices For Change call; and to sign up to BRIAN, our ground-breaking app and databank for support, whether you’re living with a brain tumour, caring for someone who is or work in health care or research. 

‘Our HeadSmart campaign raises awareness of the common signs and symptoms of brain tumours in children and teenagers and aims to reduce diagnosis times to help save more lives and lower the chance of long-term disabilities caused by late diagnosis and treatment.

‘Together, we have halved the average diagnosis time from 13 weeks to 6.5 weeks. We aim to reduce that to four weeks or under in line with NHS targets.

‘Despite brain tumours being the biggest cancer killer of children and under-40s, just 3% of the £500 million a year spent on cancer research in the UK is spent on brain tumours.

‘We receive no government funding and rely 100% on our wonderful supporters and partners to help us towards our aim of doubling survival rates and halving the harm caused by brain tumours.

‘Like so many other charities, we are expecting over a 40% drop in our income this year, which is why our fundraising is more vital than ever.’ 

Get support on The Brain Tumour Charity’s free support line 0808 800 0004 or email support@thebraintumourcharity.org 

To get involved in the The Brain Tumour Charity’s Big Bake 2021 click here.