Caring for a disabled child is challenging at the best of times, but living without a definite diagnosis can sometimes make the situation all the more daunting, as VICKY ROBSON discovers.
A pre-natal scan had also showed Mya had a ‘bubble’ in her stomach, but the couple were told doctors would be able to clear it once she had arrived.
But when Mya was born, weighing 6lbs, at Wansbeck General Hospital, on November 7, 2007, at 4am, she immediately struggled to breathe on her own.
She was incubated and put on a ventilator before being transferred to the special care baby unit at Newcastle’s Royal Victoria Infirmary.
“It was devastating. I didn’t know what was happening. She was blue and they just rushed her away. It seemed like it was hours before we could see her,” says Marina, an administration assistant.
While Mya was in hospital, doctors fitted a tracheotomy – a tube through her windpipe – to allow her to breathe on her own.
It wasn’t until mid-January 2008 that Shaun and Marina were finally able to take their precious daughter home and since then, the couple say they have faced some terrifying situations together.
Through the night, they are constantly alerted to any change in Mya’s condition by a special machine monitoring her oxygen levels and heart rate. If the levels drop, an alarm is triggered to let Shaun and Marina know she needs urgent help.
When Mya was just 10 months old, she “blew the nose” of her trachea tube off and Shaun had to resuscitate her.
“Sometimes she is a tinker and she just pulls it off, so we have our hearts in our mouths, racing to get to her, and she’s actually all right. I’m quite tuned into it now. I’m straight there before the alarm goes off,” says Marina.
Three years on and the couple are now hoping to raise funds to help them build a two-storey extension and refit their home with specialist equipment “to make life easier”.
A rough estimate for the work is around £50,000, which includes a new bedroom and a separate bathroom for Mya, along with hoists and a special lift spanning two floors.
“We have never had a definite diagnosis of what it is, so it’s always potentially TH deficiency, or Infantile Parkinson’s. But we have become used to it now. Mya is Mya, she is unique. I think we have come to terms with the fact that we may never have a firm diagnosis,” says Shaun, also dad to Jack, 19.