Heartbreak combines with love and smiles

Published date10 February 2021
Publication titleWishaw Press
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...

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