When Shannon Griffiths, 24, and her partner, Addison Taylor, 27, found out they were expecting a baby, they say it was ‘the best Christmas gift.’
‘We have always wanted children and waited a long time before trying to fall pregnant,’ Shannon and Addison tell Metro.co.uk.
‘We were actively trying for six months and we found out we were pregnant a few weeks before Christmas.’
Little Louie Taylor was born July, 18, 2022, at full term, but spent the first 15 days of his life in a neonatal intensive care unit.
The little boy was born with neonatal hypoxic-ischemic encephalopathy (HIE), a type of brain damage caused by a lack of oxygen during delivery, after getting stuck in the birth canal.
The staff worked tirelessly to save Louie’s life and were initially concerned that his brain may not develop as it should. One of the conditions they thought Louie could develop was cerebral palsy.
‘It didn’t matter to us,’ say Shannon and Addison. ‘He was still perfect and loved all the same.’
But, despite doctors concerns, as Louie got older, he began to thrive.
‘He actually didn’t suffer any developmental delays or neurological issues. Louie grew to be very kind, smart, and happy boy who loved to meet new people and play with his toys.
‘His smile and laugh were infectious. To be in his presence was simply magical.’
But in May this year, after a family holiday to Majorca, Louie developed a cough and a runny nose.
Louie had recently started nursery, so his parents put his symptoms down to all the typical viruses and bugs children pick up there.
But soon, their little boy started to have frequent nosebleeds, and despite being put on antibiotics, nothing helped.
His parents say: ‘Around July, we noticed the nose bleeds, snotty nose, and cough were gone, but he was still wheezing when he was breathing.’
Then, the day before Louie’s first birthday, the situation took a terrifying turn. ‘He stopped breathing. He ended up being rushed to hospital in an ambulance.
‘Consultants found his large airways were bleeding, grey, and blocked.’
Questions ran through Shannon and Addison’s minds. ‘Was he born like this? Was he exposed to some poison? Is he allergic to something? We couldn’t believe how damaged his airways were.’
Louie had to be ventilated and sedated in Royal Victoria Infirmary’s Pediatric Intensive Care Unit for almost five weeks in total.
‘Our entire routine was flipped upside down. Our family life changed completely.
‘When Louie was in the PICU we couldn’t stay in the hospital with him. We stayed in a charity-funded house for three weeks and then decided to go home and travel to see Louie every day.
‘We needed some form of normality while he was sedated and intubated. Knowing he had a nurse with him 24/7 gave us so much reassurance while the consultants were trying to find out why Louie was so poorly.’
Louie recovered from this episode, but unfortunately, despite the best efforts of multiple hospitals, no one could find the cause of his illness.
‘Despite all the drugs and procedures Louie had, he remained the happy, kind, and smart boy he’d always been,’ say Shannon and Addison.
‘He was sharing his toys with staff, trusting them to take his temperature, and, in the end, they became his friends.’
But Louie began to deteriorate.
‘The weekend before Louie died, we noticed he was getting a bit more tired than usual,’ says Shannon and Addison.
‘The staff checked his blood levels and found his carbon dioxide level was higher than it should have been.
‘They took him to the operating theatre to intubate him so he could go on a ventilator.
‘The intubation was a success, and we left the hospital that night happy. However, we got a call early the next morning to say Louie was not able to be ventilated and there was nothing more they could do for him.
‘It didn’t seem real. Our hearts were racing, and it felt like our insides were going to fall out.
‘When we got to the hospital, we all went through every treatment that worked for Louie in the past, and they explained why it wouldn’t help him at that point. We knew they had done everything possible.
‘We spent about six hours with Louie before he passed peacefully in our arms, surrounded by his loving family.’
Devastatingly, Louie died on October, 30, this year. Shannon and Addison still don’t know what made their little boy so unwell, and are hoping to get answers from his post-mortem in the next few months.
‘We were completely numb,’ they say.
‘We knew it had happened, we’d even seen it happen, yet we just didn’t have time to process it.’
But in the midst of their grief, Shannon and Addison have done something remarkable. They’ve launched a charity in their son’s name, Louie’s Trust, that aims to ‘support local hospitals and families in the North East with children facing long-term hospital stays.’
‘We got the idea before Louie died when he was in the PICU,’ they said.
‘It’s not every day a 15-month-old dies after a long medical condition that the best consultants in the county couldn’t diagnose.
‘But children do go into hospital every day, and we want to help those that have extended stays.
‘No one is prepared for their child to be admitted into hospital for several weeks or months.
‘We aim to provide parents with a place they can go to get advice and support.
‘There are so many amazing charities and organisations out there, but parents don’t have the time to research each one to find out if they can help. We are creating one page on our site that can signpost to them.
‘We also want to provide families with the tools to feel as normal as possible. We want them to be able to decorate a hospital room on their child’s birthday, write a letter to Santa Claus, or have a cosy night watching a film.
‘We got some gifts from the staff for Louie’s birthday including a Peter rabbit happy birthday book, which inspired our birthday bags.
‘We want to give families birthday bags full of balloons, banners, and toys and provide parents with essentials like a toothbrush, toothpaste, and hairbrushes.
‘Ultimately, we want to provide as much normality to families as possible. It makes all the difference to your mental health as well as the memories you have of being in the hospital.’
Shannon and Addison say their work is ‘keeping them going’.
‘We think of Louie constantly. Wherever we go, he’s in our thoughts,’ they say.
‘We think of his past and what memories we have, and we picture what he would be like now and in the future.
‘Christmas time is particularly hard. This was going to be his first proper Christmas as he was only five months old last year and didn’t really understand a lot.’
They added: ‘We would like to say a massive thank you to anyone who has already donated and shared our story. Thank you for trusting us and believing in the vision we have.’
Louie’s Trust will need continuous support to achieve its aims. You can find more information about Louie’s Trust and how you can help on its website, Facebook page, and Instagram page.
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Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
