Mum’s agony as her baby boy dies from brain tumour just six months after birth

A mum and dad are heartbroken after losing their baby boy to a brain tumour at just six-months-old.

Lindsey Cunniff was told about a ‘dark shadow’ during her 20-week scan at Liverpool Women’s Hospital.

The pregnant mum was told doctors had detected fluid on her baby’s brain.

But it wasn’t until their son, Benjamin, was three-months-old that Lindsey and partner David Buckley received the devastating news he had had a terminal brain tumour, reports the Liverpool Echo.

The family, from Newton-le-Willows, moved into Claire House Children’s Hospice in the Wirral to spend the final months of Benjamin’s life together, where they compiled a ‘bucket list’.

On January 16, 2020, Benjamin Joseph Buckley died with his parents by his side.

Lindsey, 39, said: “Everything was fine in terms of the pregnancy until we got to 20 weeks. My 20 week scan identified a dark area within the brain but they weren’t sure what it was at the time.

“As a result I was referred onto Liverpool Women’s Fetal Medicine Unit for more scans.

“That resulted in me having an MRI scan at Alder Hey Children’s Hospital which was a bit peculiar but they were brilliant.”

The results of the scan showed that the baby had a fluid-filled sac on the brain and he was diagnosed with hydrocephalus.

It was at this time that doctors at Liverpool Women’s Hospital suggested the family speak to Claire House for support.

Lindsey said: “No one could really go into detail about what hydrocephalus meant for Benjamin.

“Some of the things we were told by consultants were quite wide ranging – anything from it may not have that severe of an impact to he could be quite mentally impaired to he might not survive delivery.

“They didn’t really know until he had been delivered and they could see him. They did as many scans as they could during pregnancy.”

Due to the hydrocephalus, Benjamin was taken for emergency surgery to have a shunt fitted in his brain shortly after being born on August 7, 2019 via C-section.

Lindsey said the support from staff at Claire House was amazing during this time, from attending doctors appointments and explaining terminology to sitting with her in theatre after the caesarean, enabling David to go with Benjamin to the neo-natal unit.

A month after the surgery, Lindsey and David returned to Alder Hey Children’s Hospital for Benjamin to undergo a routine MRI scan.

And in a subsequent appointment they were told the devastating news that Benjamin had a brain tumour.

Lindsey said: “They did further tests and they took a biopsy of the tumour and it transpired that the type of tumour wasn’t treatable.

“The only option he had was chemotherapy. Because of the type of tumour he had they couldn’t really recommend any type of drug that would be successful.

“We were told there was basically a zero per cent chance of any treatment being successful.

“I think up until that point we’d always felt there was some hope, so to be told that it just removes all hope that you could have that there would be another outcome.”

Due to the diagnosis Lindsey and David made the difficult decision not to put Benjamin through any further surgery or treatment, and in December 2019 they all moved into Claire House together.

During this time they compiled a ‘bucket list’ of things to do with Benjamin.

This included taking trips to Blue Planet Aquarium and to Chester Zoo, meeting Santa, going to a game of golf and watching football on the TV with his dad.

Lindsey said the staff at Claire House went out of their way to help them arrange these activities, and they also had family photographs taken by the charity Jump.

As Benjamin’s condition began to deteriorate the family moved their beds into his bedroom.

Lindsey said: “When somebody old like a grandparent dies it affects people differently and it’s sad, but that person has lived their life.

“I think with a child it very much feels like something has been stolen from you and you lose all of the things they could or would have done. It’s the wrong order of things.

“No one can prepare for what that is. It’s just heartbreaking.”

On January 27, 2020, the family had a funeral for Benjamin and he was buried at a woodland burial site in Rainford.

Lindsey added: “It’s only when you go [to Claire House] that you realise how much they do both in terms of supporting families during pregnancy to when you’re in hospital.

“The level of care and medication Benjamin needed towards the end was a big job and having someone to help and take responsibility for that allowed us to focus on the nicer things and on being a normal family.”

In a bid to support Lindsey with her fundraising efforts, the company she works for, The Environment Partnership (TEP), have chosen Claire House as their annual charity.

Their fundraising activities include colleague Kate Shilcock’s challenge to run, swim or cycle 5km every day for a year.

Katie is in the final month of her challenge and is hoping to reach a personal fundraising target of £1000, which would pay for approximately 50 hours of one-to-one nursing at Claire House.