A Nottinghamshire mum whose toddler was born with a severe form of epilepsy has said she's 'enjoying every moment we've got'.
Shannon Tinegate, of Newark, had to watch her tiny newborn Kane - now three - suffer his first seizure at just half an hour old, but said she didn't recognise the signs at first.
Twenty-seven-year-old Shannon, also mum to four-year-old Cole, said Kane was a totally healthy and normal pregnancy. He was born on May 31, 2019 at Nottingham's City Hospital.
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"I didn't have any complications when he was born. He was breathing, he was moving, he was doing all the things he should be doing," she said.
But around half an hour after his birth, a midwife noticed Kane was moving in an unusual way. The midwives decided to take Kane to the neo-natal unit next door.
Shannon said: “I thought yes that’s fine, because I had been heavily reassured already that he was breathing, he was normal and wasn’t poorly like my first born was."
Shannon's eldest son, Cole, spent nine days after his birth in the Neonatal Intensive Care Unit with pneumonia and two collapsed lungs. Because of this, Shannon wasn't of the normal movements of a newborn.
She continued: “It turned out that in front of me he was having apnoeas, his back would arch and lean to the side and stay there for a couple seconds, and then would rest back into a natural baby pose. He kept repeating the same movements.
“I didn’t know any of that. The movements that were happening were normal, I thought. My first baby was poorly as well. He was sedated for the first four days, so I didn’t know what the first movements of a newborn would be. That was a bit of a shock for me.
“It took a few hours for the doctors to settle him in at NICU from the point when they took him to when they got him, his seizures were obviously becoming bigger and longer, bigger movements.
“Because I had been in the NICU with my eldest it was normal for me. I was familiar with some of the doctors that were still there and knew the signs and the noise of the machines.
"For somebody else it could be their first time and they could panic at every noise. But for me I’m sort of familiar with it so it wasn't too bad for me.”
Kane was eventually transferred to the Queen's Medical Centre where he spent time in the NICU, E40 and intensive care unit. It wasn’t until he was five months old when he was discharged and went home for the first time, eventually being diagnosed with Migrating Partial Seizures of Infancy.
“It was really difficult for me at the time because obviously I had another boy at home, who was only about 13 or 14 months as well. It was like living in the hospital on your own then coming home for a few days to spend time with Cole. Those are obviously really challenging times but as a family we all come together and all try to do our very best when it gets to those kinds of stages."
Kane's epilepsy is sadly life-limiting and those with the condition often do not survive beyond early childhood.
“I’ve never really been a pessimist about it. I don’t look at Kane's condition and think, well he’s three now, will he get to his fourth birthday, or will this be his last birthday that I will have with him?
"I have to look at his life differently,” Shannon said.
"Whereas I know other people can do things differently, I choose to be more optimistic about it. I don’t choose to ignore it, I am aware that is the situation of his diagnosis. I am aware that it will happen, unless I am on that bedside with him or unless it is that moment, then I won’t choose to treat him any differently.
"We still do everything together as a family, we still go on days out and I try and include them both in everything as much as they can. We are doing good, we are making the most of the time we have got together as a family. We are enjoying every moment that we’ve got."
Shannon and her family have been supported by Rainbows Hospice for Children and Young People since 2020. The hospice allows Shannon to spend time with her two boys, whilst Kane can also get the care and support he needs. This Christmas the hospice is appealing for donations which support families like Shannon's.
Nishil Saujani, acting Director of Support Relations at Rainbows, added: “We know times are really difficult for everyone right now but there are hundreds of babies, children and young people who need our care and support, and for some, this will be their last Christmas with their families.
“As the only children’s hospice in the East Midlands, Rainbows is essential to so many families and we really hope you can support us with a donation, no matter how small.”
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