Baby home, needs full-time care
At just 9 months old Chrissa Squire has spent more time in hospital than most people do in their entire lives.
Her most recent visit extended to 61 days. In that time she survived having her life support switched off and was left with severe brain damage after a reaction, but she has finally made it home.
Chrissa was born with Pierre Robin syndrome. The condition meant she was born with an unusually small lower jaw and a tongue that fell backward in her throat, which could block her airway.
But it was a reaction to anaesthetic, triggered by a condition unknown before she was admitted for bronchiolitis in September, which caused her parents to wonder how long they had left with their youngest child.
‘‘For us it’s living day-to-day for her. We don’t know how long she has so we’re going to make the most of everything,’’ mum Stephanie Allan said.
When Chrissa had bronchiolitis it deteriorated into pneumonia and she was put on a ventilator.
She was given anaesthetic and immediately had a reaction. Her heart stopped, which resulted in brain damage.
Her parents were unaware she was susceptible to a condition called malignant hyperthermia before it was too late.
The condition causes muscle contractions and a rapid rise in body temperature when a patient is given general anaesthetic.
Days later, Allan would find out her daughter was left with extensive brain damage because of the reaction.
After a period in hospital, which made up more than a quarter of her life, Chrissa was recently able to return home to her parents, sisters Kimberly and Helena and brother Christian.
She was sleeping better at home – up to six hours a night – when in hospital she was sleeping about four, Allan said.
Chrissa was ‘‘having good weight gains’’ and had reached 5.21 kilograms by November 30, just under 3kg lighter than the average child her age, according to the World Health Organisation.
‘‘We still don’t know how much she can see,’’ Allan said.
‘‘We know she can hear . . . she can kick and move her arms a little.
‘‘She is so strong and brave, I want to believe that she will be with us for a long time yet.’’
Chrissa was able to have daily outings with family, with Allan using a rain cover over her pushchair to avoid exposure to respiratory illnesses she was prone to.
Her daughter had developed more medical conditions and disabilities because of her battle, including spastic quadriplegia – a type of cerebral palsy affecting all four limbs – and severe hypoxic ischemic encephalopathy – a type of brain damage caused by lack of oxygen to the brain.
Allan said it was tough, but she would do ‘‘whatever it takes to provide her the best life’’.
‘‘She has fought so hard to keep it, she deserves the world.’’