Sunderland couple launch Louie's Trust in memory of baby son to help others

A Sunderland couple who've suffered the unimaginable trauma of losing their son when he was just 15-months-old have launched a trust in his name to help other families.

Little Louie died on October 30 this year after spending five months in hospital with undiagnosed respiratory problems.

Previously a healthy little boy, he began experiencing breathing problems when he returned from holiday with his mum and dad, Shannon Griffiths, 24, and Addison Taylor, 27, in May this year.

At first doctors thought the Ryhope youngster just had a cold or virus, but he went on to endure months of complications and procedures, including collapsed lungs, bronchoscopies, intubation, ventilation, spending weeks at a time in intensive care and numerous tests to find the cause of his respiratory problems.

His mum and dad are still awaiting the results of his post-mortem examination and other tests to see what could have caused Louie's illness.

But, as they navigate the pain of grief, they've found comfort in creating Louie's Trust which aims to provide some normality and support for families of poorly children.

Louie was initially admitted to Sunderland Royal Hospital before spending his final months receiving specialist respiratory care at the Great North Children's Hospital within the RVI in Newcastle.

There, Shannon, who works for Hays Travel, says they were given unwavering support from the staff who helped them through the darkest of times.

"Despite all that Louie went through in his life, he was a happy, loving and caring little boy and the staff gave him all their attention," said Shannon. "They were absolutely heartbroken when he passed.

"When you have a child who is intubated he can't talk or communicate with you, but the staff would talk to us all day. They kept us going and made it all easier."

A month before he died, Louie had shown some improvement, he was eating, playing and seemed more himself, just more tired.

Shannon says she and Addison cherish those final few weeks with their only child.

"We had the best time without knowing it was his final few weeks. We did arts and crafts with him and sensory activities and he was doing well."

Despite showing some improvement, Louie began to experience problems with his CO2 levels and oxygen requirement and he went to theatre to be intubated again.

All went well, but his parents got a call in the early hours of the morning to say that a doctor had had to spend two hours manually breathing for their little boy and that there was nothing more they could do.

Shannon and Addison got to spend the final precious hours with Louie, telling him how proud they were of him.

"He was a kind and happy little boy and I think that's a test of his character after what he went through," said Shannon. "He never got stroppy or angry, he didn't know unhappiness.

"And I feel like he did that for us, so we didn't have to suffer seeing him like that. We couldn't ask any more of a child."

Louie had been born full term on July 18, 2022, and had spent his first 15 days in neonatal intensive care unit (NICU) after being starved of oxygen at birth.

Doctors had warned his parents he may face developmental delays as a result, but he went on to thrive, meeting all his milestones.

It wasn't until he started developing respiratory problems in May, aged 10 months, that his health took a turn for the worse.

After he was admitted to the RVI in August, specialists told Shannon and Addison, a graphic designer, that they had never seen anything like it in their 30 years' experience.

Medical staff battled to help Louie all they could and consulted with respiratory specialists at centres around the world on his treatment.

"They knew something was wrong, they knew it was serious, but they didn't know what was causing it," said Shannon. "One thing it could be is scarring to the tissue caused by a virus, but we just don't know yet. Another thing could be a collagen disorder.

"They did tests and tissue samples on Louie in the post-mortem that couldn't be done when he was alive, so we're hoping that may give us some answers."

Louie's Trust

Shannon and Addison have channeled their grief to launch Louie's Trust.

The trust, which is working towards charity status, is aimed at filling gaps in the NHS to provide parents and families of poorly children with essentials they may need during a hospital stay, such as self-care hampers, birthday bags, Christmas Eve boxes and arts and crafts packs for different ages.

They've been collaborating with the RVI on the trust and have been supported by the staff there, including Michael Mckean, clinical director at Great North Children's Hospital, and they’re looking to also work with Sunderland Royal.

"You never expect your child to have to go to hospital," said Shannon. "So you often just don't have things you may need to make you feel human and put you in the best frame of mind to care for your child."

The trust also aims to be a one-stop shop for parents providing them with the advice on charities and support agencies they may need whilst their children are poorly.

Shannon said: "I feel like I have all this knowledge of hospitals now after what we went through with Louie and it would be a waste not to be able to pass that on to help others."

Addison added: "We also want to raise awareness for new and younger parents. Sometimes you have to push hard for answers about your child's condition and we want to help give them the confidence to do that."

In a few weeks, the couple have already raised more than £3,000 in donations and they are looking to team up with local businesses who may be able to help with hospital packages, as well as help in organising fundraising events.

For more information on Louie's Trust and to donate visit www.louiestrust.org

Any businesses who'd like to donate to the packs can email [email protected]