Loving Barrhead mum Louise Countenay is not a woman of faith. But, since someone told her during a visit to CHAS’s Robin House that she’d been chosen to have son Adam for a reason, those are words she truly believes.
When Adam Courtenay came into the world on September 23, 2016, mum Louise, dad David and big sisters, Tegan and Emma, instantly fell in love with him.
A seemingly healthy baby boy who was thriving at home, Adam was five weeks old when he attended hospital for a routine MRI scan to check the depth of the large port wine stain birthmarks with which he’d been born on his face, back and legs.
The call Louise and David received from the hospital later that same day was to turn their family’s world upside down.
The scan had revealed that Adam had Sturge-Weber syndrome, an extremely rare condition that affects the brain, eyes and skin.
“They arranged an appointment for us to go in the next Tuesday and speak to the specialist. They asked us not to Google it over the weekend,” said Louise. “Of course we Googled it.”
But on the morning of the appointment, Adam had his first epileptic seizure and was rushed to Glasgow Children’s Hospital.
“From that moment on, everything kind of escalated and we found out more about the condition,” said Louise, 41.
Typically, those who have Sturge-Weber syndrome (SWS) have a port wine stain – a vascular birthmark caused by abnormal development of blood vessels in the skin, as well as an extra layer of blood vessels over the surface of the brain which can cause seizures.
Louise explained: “Sadly, Adam has the most severe type called bi-lateral Sturge-Weber, which covers the majority of his brain. This means that only a tiny part of his brain can develop while the rest of his brain will get smaller and eventually die off as it will not get enough blood and oxygen to grow, which will cause further complications for Adam as he gets older.”
SWS affects an estimated one in every 50,000 births – but experts at London’s Great Ormond Street Hospital believe Adam is one of only six children in the UK where it covers both sides of the brain.
Louise continued: “After his first seizure, we spent five days in hospital while they started Adam on his first anti-epileptic drug. We were introduced to our neurologist, who provided us with more information about his condition, which had gone from being life-changing to life-limiting.
“This was an incredibly hard time for us all, as we discovered more and more complications Adam had. We found out that he would never walk or talk, would never be able to sit up unaided and was almost completely blind. We were devastated and just wanted the world to stop. But we had to carry on, as we had two other children to look after.”
Adam spent most of his first year in hospital, where he experienced terrifying seizures which stopped him breathing.
“It took a long, long time to get some form of control of his condition and the continued seizures caused further brain damage which, in turn, caused more problems for his little body to deal with,” said Louise.
His sisters, who radiate love for Adam, have always taken his condition in their stride.
Because she was only six, Tegan can’t recall how her parents told her about her little brother’s illness – but, she says, she always knew he was “special,” and she’s the first to help out with Adam’s feeds and nappy changes.
To have a baby with complex needs as part of the family also seemed to come as second nature to Emma who, as a four-year-old, would pretend to feed her dollies through a nasal tube.
It was soon after hospital staff told Adam’s parents about CHAS and Robin House in January 2018, that they made their first day visit.
“As soon as we walked in, they made you feel at ease,” said Louise.
“We met all the wonderful nurses, doctors and staff who welcomed us with open arms. They made us feel at home straight away and told us all about the hospice and what they could do for us. It was a home-from-home.”
Soon, the whole family was enjoying overnight stays every couple of months at Robin House in Balloch. Because he was on continuous oxygen, a standard swimming pool hadn’t been an option for Adam. But here, Tegan, 12, and nine-year-old Emma can splash in the water with their little brother – one of the many precious memories CHAS is helping the family to create.
During weekend stays, the activities team spend time with Adam and the girls in the art room, gifting Louise time for a soothing massage from one of CHAS’s many volunteers who offer complementary therapies for parents.
With babysitters on hand for the sisters, and nurses looking after Adam’s every needs, Louise and David can even enjoy a drink and a pub supper in Balloch together, knowing that their children are being well cared for.
When in 2019 the couple decided to marry, they immediately called Robin House to ask if they would have Adam and his grandparents to stay the night before the wedding.
The team went out of their way to accommodate. CHAS nurse Courtney, who had cared for Adam in her previous job as a neurological nurse in Ward 3 of the Glasgow Children’s Hospital, dressed Adam in his wedding attire on the morning of the big day and was present throughout, feeding, changing him and administering his medication, before taking him back to Robin House, where he spent the night.
“Without this help, we wouldn’t have been able to relax as much as we did on our wedding day,” said Louise. “The staff just go above and beyond – that’s what they do every day for families like ours.”
Although Adam’s brain cannot compute conversation and he is 97 per cent blind, his parents and sisters firmly believe he recognises their voices.
“For all the things Adam can’t do, he is the cheekiest wee boy, and he knows how to get his mum’s attention. He can vocalise, and if he’s upset, he has a different sound, ” said Louise.
“Adam will wake up through the night and shout until I come down and cuddle in with him. And we definitely know when he is happy. For a long time, maybe two years, Adam did not laugh or smile. When he does laugh, it is such a special moment for all of us – because we don’t know when it is going to happen next.”
Despite their busy lives, the family have been raising awareness and funds over the last six years for both CHAS and the Glasgow Children’s Hospital Charity.
The fundraising feats of David, Louise and their relatives and friends include climbing Mont Blanc, trekking the Arctic, a London-to-Paris cycle, running four miles every four hours for 48 hours, and the Run 100K September challenge. Incredibly, since Adam was born, they’ve generated more than £70,000, split between the two charities to whom they’re indebted.
“A lot of my friends say: ‘How do you cope?’ But, you’d do anything for your children,” said Louise.
“You can say: ‘Why us?’ But, at the end of the day, he is our son, and we couldn’t change him for the world. He’s a strong-willed, loving wee boy, who is so full of hope, laughter and sunshine. He is a superhero in our eyes – a superstar. ”
Six-year-old Adam has defied doctors, who did not expect him to live beyond his fifth birthday.
Said Louise: “I honestly don’t know how long we have got. We make the most that we possibly can of every single day. We can tell he is stronger in so many ways, after everything he has been through. He is a fighter, and has such determination to keep going.”
And she added: “We could not cope without CHAS. We’d be lost without them. The support they give us, emotionally and physically, is our lifeline. Robin House is an amazing, happy place, and we love it so much. They engulf you.”
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