Parents raise money for bereavement charity in memory of five-month-old son who died from underlying heart condition

PUBLISHED: 13:33 22 September 2020 | UPDATED: 13:33 22 September 2020

Manea couple Amy Holmes and Ben Setchell’s five-month-old son Thomas died suddenly from an underlying heart condition in August 2018. They are now raising money for Tommy's, a charity that helps parents who have suffered a bereavement. Picture: FAMILY

Manea couple Amy Holmes and Ben Setchell’s five-month-old son Thomas died suddenly from an underlying heart condition in August 2018. They are now raising money for Tommy's, a charity that helps parents who have suffered a bereavement. Picture: FAMILY

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A Manea couple whose five-month-old child died suddenly from an underlying heart condition are raising money for a charity that helps parents who have suffered a bereavement.

Manea couple Amy Holmes and Ben Setchell’s five-month-old son Thomas died suddenly from an underlying heart condition in August 2018. They are now raising money for Tommy's, a charity that helps parents who have suffered a bereavement. Picture: FAMILYManea couple Amy Holmes and Ben Setchell’s five-month-old son Thomas died suddenly from an underlying heart condition in August 2018. They are now raising money for Tommy's, a charity that helps parents who have suffered a bereavement. Picture: FAMILY

Amy Holmes and Ben Setchell’s “most beautiful baby boy” Thomas Edward Setchell was born on March 25 2018. However, on August 22, he passed away from dilated cardiomyopathy caused by a viral infection called paraecho virus.

The family, who have since gone on to have a “healthy little sister for Thomas” named Ivy Jane Setchell, have set up a fundraising page to raise awareness of the condition and to help the baby charity Tommy’s.

So far, they have raised £482 in memory of Thomas, with 26 people donating to the JustGiving page to date.

Manea couple Amy Holmes and Ben Setchell’s five-month-old son Thomas died suddenly from an underlying heart condition in August 2018. They are now raising money for Tommy's, a charity that helps parents who have suffered a bereavement. Ben and Amy are pictured with their daughter, and Thomas' little sister, Ivy Jane Setchell. Picture: FAMILYManea couple Amy Holmes and Ben Setchell’s five-month-old son Thomas died suddenly from an underlying heart condition in August 2018. They are now raising money for Tommy's, a charity that helps parents who have suffered a bereavement. Ben and Amy are pictured with their daughter, and Thomas' little sister, Ivy Jane Setchell. Picture: FAMILY

Amy said: “Ben and I couldn’t believe our luck when Thomas was born. We had the most beautiful baby boy, everything else just seemed to disappear.

“We had the best time becoming parents, we laughed, cried and made some wonderful memories in the first few months with our baby boy.”

However, when Thomas was coming up to five-months-old, Amy says she “knew something was not quite right with him. He was very lethargic, not feeding and not his normal smiley happy self.”

Manea couple Amy Holmes and Ben Setchell’s five-month-old son Thomas died suddenly from an underlying heart condition in August 2018. They are now raising money for Tommy's, a charity that helps parents who have suffered a bereavement. Ben and Amy are pictured with their daughter, and Thomas' little sister, Ivy Jane Setchell. Picture: FAMILYManea couple Amy Holmes and Ben Setchell’s five-month-old son Thomas died suddenly from an underlying heart condition in August 2018. They are now raising money for Tommy's, a charity that helps parents who have suffered a bereavement. Ben and Amy are pictured with their daughter, and Thomas' little sister, Ivy Jane Setchell. Picture: FAMILY

Amy decided to take Thomas to the doctors where they believed he had a start of a chest infection, so appropriate measures were put in place to clear it up.

On August 18 she remembers that, after giving Thomas his inhaler, “his lips went blue. Ben and I took him straight to A&E where they saw him immediately and started to undergo the basic tests.

“Upon a paediatric consultant assessing Thomas, she listened to his heart and detected a faint murmur”.

Thomas then underwent a chest x-ray where doctors found a shadow surrounding his heart. He was diagnosed with bronchiolitis and kept in hospital overnight.

Amy added: “Myself and the nurses on the ward monitored him throughout to make sure he was drinking a sufficient amount of fluids.”

The next day, Amy and Ben were instructed to go home and to continue monitoring and recording Thomas’ fluids with a view to return on the Monday to receive an electronic heart scan.

“Monday and Tuesday soon passed and Thomas had hit the worst of the infection, sleeping all day and not letting anyone hold him,” Amy added.

August 22, she said, “was a normal day. Ben had given him a kiss goodbye before he left for work, I had got up, got myself and Thomas dressed and prepared his morning bottle.

“He was sleepy and reluctant to drink, but with some perseverance, I managed to get him to drink 1oz of milk.

“But, all of a sudden, Thomas became unresponsive and had appeared to had stopped breathing. The rest of that day is a faint blur to myself, Ben and our family.”

Thomas passed away at 1:30pm on August 22, 2018 at Peterborough hospital “surrounded by his mummy and daddy.

“A few weeks passed, we all weren’t quite sure how and why this had happened to our gorgeous little boy.”

Amy said that “so much has happened since”, including Thomas becoming a big brother. Because of this I haven’t been great with our fundraising for ‘Tommys’.

She is now hosting various events to raise funds and awareness to parents of young babies and children. This started, in 2019, with a paediatric first aid course for parents to learn basic first aid skills.

Amy is also selling charity wristbands in memory of Thomas, which are available at £2 each, with all money going to the Tommy’s charity after the donations have been collected in charity pots.

“During the current situation I understand money is tight for many families,” she added, “but every little donation will help someone somewhere suffering an heartbreaking loss like ours.

“If you or anyone you know would be interested in having a charity pot and/or wristbands in your business or workplace please get in touch.

“Please share so we can raise as much money as possible.”

To donate visit Amy Holmes’ JustGiving page.


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