Heartbreak combines with love and smiles
There are many lessons that being a dad of a child with a life-limiting condition have taught Scott Sneddon.
While he and wife Sally provide loving, round-the-clock care for six-year-old Sia, who has complex needs and is almost completely blind, perhaps the most enlightening lesson of all for Scott has been how to open his own eyes to the world of experiences that are there to be unlocked for his little girl.
Sia, the couple’s second child, was born on October 27, 2014.
Within 24 hours, she was welcomed to the family’s home by big brother Silas, then aged two.
“When she was born, we noticed that she was having what we thought were twitches,” explained Scott.
“She was born perfectly normally. She had a cleft lip – but that didn’t cause us any undue concern. My wife’s father and nephew were born with a cleft lip. It ran in her side of the family.”
But when the couple mentioned the ‘twitches’ to a visiting midwife when Sia was five days old, she seemed concerned, and asked them to take their baby back to Wishaw General.
“They started running some tests. Sia was in hospital for a couple of weeks and that was when we started to find out more about what was wrong. It was a difficult time,” remembered Scott.
“The doctors suggested that we stayed with her in hospital because she went through a particularly ropey period after that, and was in the high dependency unit for a while. Things started to develop, and the seizures – as they were identified as being – intensified. It was like slowly putting the pieces together of a big jigsaw.”
As they gleaned more information from medics about their baby’s condition, Scott and Sally were able to provide some missing pieces of their own to the puzzle.
“When you feel a baby kicking in the womb, with Sia – in retrospect – there were times when the kicks were rhythmical and sustained, like a drum beat,” he said.
“With the benefit of hindsight, we were able to determine that she was having seizures in the womb before she was born. Seizures do tend to have a pattern and a sequence to the movements. That drum beat had been seizure activity.”
Baby Sia was transferred to Yorkhill Hospital for Sick Children, where an MRI detected brain abnormalities.
The infant was diagnosed with rare, neurological condition, Aicardi syndrome, which causes seizures and developmental delays. Sia’s complex condition means she is unable to sit up, does not have full head control and will never walk. And because her optic nerves did not form properly, she has severe visual impairment.
Scott continued: “Sally and I did think on more than a few occasions that Sia might not make it.
“Those were dark times and I try not to dwell on them too much. We’re just grateful for how she is now. I guess the most poignant thing we were told was that if Sia makes it to adulthood, that would be a good result.
“From that point on, we were conscious of the seriousness of the situation and have tried to make the most of what we have got.
“As it has turned out, touch wood, Sia has remained healthy and well. Her general physical health is good, and she is less susceptible to some of the complications that can creep up.
“She cannot do anything for herself. She needs round-theclock care. She is fed through a tube into her stomach. Although she is non-verbal, she has her own way of communicating. She’s very expressive and makes certain noises that we, over time, have learned mean she wants certain things.
“Seizures are a constant in Sia’s life. Through medication, we have been able to substantially reduce the seizures and their severity so she can have as normal a life as possible. But because the brain abnormalities are so extensive, we will never get total control of the seizures.
“She has a couple every day and all we can do is try and keep her comfortable when they are happening.”
Scott and Sally, who learned that cleft lip and severe visual impairment are both features of Aicardi syndrome, consider themselves fortunate that their daughter has received exemplary medical care from Professor Sameer Zuberi, consultant paediatric neurologist at the Royal Hospital for Children in Glasgow, and one of the world’s most eminent child neurologists.
Similarly, at University Hospital Wishaw where she was born, Sia also regularly sees leading consultant paediatrician
Caroline Delahunty. And it was she who suggested when Sia was six months old that the family be referred to CHAS.
“Initially, I was very resistant to the idea,” admitted Scott, 47.
“I had this idea in my head that a children’s hospice was a dark, gloomy place where children go to die. And I thought, ‘we don’t want to get involved in that’.
“But, I got my eyes opened. It was nothing like I imagined. CHAS are incredible. They do so much for so many kids. And it’s not just Sia – it’s Silas, too. They involve siblings and make sure there is fun and excitement for them as well. Silas loves going to Robin House. There are so many great things to keep him entertained.”
In normal times, the family made day visits to Robin House in Balloch. Because they share their own countryside home with dogs, ducks, pigs and sheep, it was rare for the whole family to be able to enjoy weekend stays there altogether.
But on the occasions when 24or 48-hour respite was possible, the downtime came as a welcome break for busy professionals Scott, who’s a solicitor, and 40-year-old clinical psychologist Sally.
As the couple juggle their careers with home schooling and caring for Sia, the coronavirus restrictions have brought additional pressures to bear on Scott and Sally, who were bouyed by last week’s announcement that schools are expected to start reopening to pupils at the end of this month.
Silas, who celebrated his eighth birthday on Saturday, will be returning to his P3 class, and transport will resume to take his little sister to and from Victoria Park School in Carluke.
“She really does enjoy school,” said Scott.
“It was probably as a consequence of my general ignorance about this sort of thing that I thought: ‘What’s the point in school when she doesn’t have the mental capacity?’ But my eyes have been opened to what can be provided at schools like Victoria Park to children with significant difficulties.
“There, she does all sorts of things that bring her enormous joy. She gets physio and movement there, so she does not seize up.
“She gets medical care at school, which is great, and can use different equipment that we couldn’t have at home. She gets a good range of activities that broaden her horizons, and gets to experience things she wouldn’t otherwise experience.
“The big test is whether or not she is smiling. When she comes home, I can see she is really happy and has enjoyed what she’s been doing.”
Despite her many challenges, the delight Sia gets from the activities brought to her in her own home during lockdown by CHAS’s virtual hospice services shine from her.
From Hearts & Minds’ clown doctors and storytelling time, to virtual Halloween and Christmas parties including a Zoom call from Santa and Darth Vader, to Nordoff Robbins music therapy, Scott describes the virtual hospice services as “a wee ray of sunshine to brighten the day.”
And there’s nothing that brings a bigger smile to Sia’s face more than music – with her eclectic tastes ranging from Elvis to country – and laughing at the antics of Silas.
“He’s an amazing big brother,” said proud dad Scott. “He never gets jealous of the amount of attention we have to give Sia and is always patient when he has to wait for something because we are dealing with Sia. He’s also at an age now where he wants to help with Sia’s care, although we try to resist that to allow him to have as normal a childhood as possible.
“He really loves his wee sister. He has a very close bond with her and she thinks the world of him. She always smiles and makes noises when Silas gives her a cuddle.
“Not a day goes by without Sally and I wishing Sia had a normal brain and consequently also had the opportunities that would open up for her.”
Sinead Thomas, fundraising campaigns manager at CHAS, said: “The love and kindness shown by our community of supporters and volunteers, standing with CHAS families in one of the most challenging years of our history has been tremendous.
“We simply couldn’t do what we do without the care they have shown. But we still have a lot of work to do, to raise more urgent funds so we can be there for every family in Scotland who needs our help.
“We believe that no-one should have to face the death of their child alone. And together with the support of the kind people of Scotland, we will be there for every dying child.”
To find out more about CHAS, visit www.chas.org.uk, or donate at www.chas.org.uk/donate