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Noah and Heidi Pedlar
Little Bridge House is a ‘haven’ for Noah and his family
Noah, nearly 5, loves visiting Little Bridge House with his mum and dad and older sister Heidi, 8.

Parents Louise and Stuart Pedlar received a call on Noah’s first birthday with the devasting news that one of their son’s many complex medical conditions could cause a sudden end-of-life event.

Following a complete loss of lower limb movement, an MRI scan showed that Noah, who has spina bifida, had a holocord syrinx in his spine, a large fluid-filled cavity, resting just a few centimetres from his brain stem, that could also have detrimental effects in terms of upper limb paralysis and breathing difficulties.

His local paediatrician explained that it was impossible to say what this would mean in terms of Noah’s life-expectancy, and In May 2016, five months after receiving Noah’s diagnosis, the family was referred to Children’s Hospice South West.

“We found out that Noah had the most severe form of spina bifida during our 20-week anomaly scan and were given quite a bleak outlook even then for his life, with lots of unknowns and potential complications.” said Louise.

“We were told that he would likely never walk, that he would experience bladder and bowel dysfunction, and that he had fluid on his brain that could result in brain damage, just to name a few.

The sonographer told us to prepare ourselves for a severely handicapped baby.

“But nothing could have prepared us for the phone call on Noah's first birthday, informing us of his new diagnosis.  We knew that life would have its challenges for Noah, but amidst the birthday celebrations, we were being told that our son may not live to see another birthday; it was very much a case of make the most of every day for as long as we’ve got him with us.”

Louise said the family were apprehensive about visiting the charity’s Little Bridge House in Fremington for the first time but soon found the hospice to be very different from what they’d imagined.

Noah and Heidi Pedlar

“When our community nurse suggested referring us to the children’s hospice, I think that’s the first time it sunk in just how serious it was,” said Louise.

“Like most people, I had this preconception that hospice was the end, but the focus is not about end-of-life, it’s about life and about making the most of every single minute that you have for however long you have that time for. It was a big surprise to us just how much life we would get from the hospice.”

Noah, now nearly 5, loves visiting Little Bridge House with his mum and dad and older sister Heidi, 8.

He just loves everything from the moment he sets his wheels inside the door.

“He loves the big open space as being a wheelchair user, he can get from one end of the house to the other and there is nowhere he can’t go, whereas in lots of places it’s restricted.

“And he really likes the jacuzzi because up until last year he had a tracheostomy so water was quite a high risk. It was nice for him to be able to experience water in a safe environment.

“Noah also loves the food – when the bell rings that’s his favourite time. He loves everybody there – the fundraising team, the sibling team, the care team, the cooks – he definitely sees the hospice as an extension of his family.”

Louise said the family drive past Little Bridge House on the daily school run and Noah always points at the sign and asks to go. The hospice has also been a huge benefit to sister Heidi.

“The sibling team have been an amazing support to Heidi in terms of helping her to deal with all the emotions that come with having a brother with a life-threatening condition,” said Louise. 

“It’s hard enough for an adult to deal with, not knowing how long they are going to have their child for, but for a child to process all that information has been quite tough for her. She also doesn’t want to burden us, so to have a team that she can talk to about any worries she may have has been really valuable for her.

“They make every stay so much fun, she can't wait to go! There is always something exciting happening, and they make her feel so special. In her words, they make every day feel like Christmas! She is such a loving big sister and has had to cope with so much, the hardest being separated from both Noah and I for weeks, or even months at a time, only visiting at weekends. She copes better than I do; we are really proud of her.”

For Louise and husband Stuart, Little Bridge House has also been invaluable.

“It’s just like one big family and even though we live so close to the hospice, when we go there we feel like we could be anywhere,” said Louise.

“We’ve built really strong relationships with our care contacts so just being able to talk to somebody about everything that’s going on, and for them to understand what you’re going through, has been a huge help to us.

“To go somewhere where you’ve got so many skilled people and knowing that if Noah was to take ill there are people there who can help, is a weight off your mind.

“Meeting other families is lovely too. Although they are all on different journeys, they all have that same cloud of uncertainty and can relate to what you are going through.”

Louise said that Little Bridge House was a ‘haven’ for the family.

It’s a retreat where we can just go and forget about everyday mundane things.

I think everybody uses the hospice differently and it’s very personal in terms of what you want to get from the hospice.

“We still do a lot of Noah’s care, but we get the relief from not having to cook, not having to worry about the silly everyday jobs. So much of our daily lives is filled with appointments, when we got to Little Bridge House, we can just focus on Noah and Heidi and having special time and making memories that we wouldn’t otherwise be able to because life is just so hectic. Quite simply, we can just be a family.

“The hospice brings hope to families, the hospice brings life to families – it’s all about making the most of every precious moment.”