Two and a half years after a doctor injected her spine with antiseptic instead of anaesthetic during the birth of her first child, Grace Wang is yet to come to terms with a medical disaster that has torn away her hope for the future and replaced it with fear and uncertainty.

Grace Wang is a frightened woman. It’s all-pervasive, a fear that lives in the lines etched on her face. It breathes in the longing that washes over her when she sees her two-year-old son, Alex.

Yet perhaps most of all, it is vivid in the despair that sometimes grips her when she gazes into the eyes of her husband, Jason.

Related: My epidural hell

“I love Jason and Alex: I cherish them,” Grace, now 33, tells the January issue of The Weekly. “They are the most important people in my life. But my greatest fear is that one day this life we are leading will become too much for Jason and he might leave me.

“It’s not that I don’t have faith in him. I do. But every day is a struggle. Not just for me, but also for him. It’s difficult to keep hope alive when even life’s smallest joys have been taken from you.”

The grim truth is that Grace Wang has every reason to be frightened. Not because Jason will leave her — he is as devoted to his wife as any husband could be — but because she is a woman caught in a catastrophe.

Two and a half years ago, during what should have been a routine epidural procedure at St George Hospital in southern Sydney, an anaesthetist injected antiseptic, Chlorhexidine, instead of anaesthetic into her spine during the birth of her first child, Alex.

The toxic chemical ravaged Grace’s nervous system, bringing on searing pain and stripping away her ability to move, first, her legs, then her arms and, finally, robbing her of feeling in most of her body.

Today, she is virtually a quadriplegic, consigned to a wheelchair and unable to perform even life’s most basic functions. She remains unable to hold her son, something that haunts Grace’s every waking moment.

After more than a year in St George Hospital, where specialists tried to assess and stabilise her condition, Grace and her family now live in rented accommodation close by. They moved there in June 2011, the day before Alex’s first birthday.

“We were very glad and excited to move into the house,” says Grace. “We had a little champagne to celebrate.”

Yet she couldn’t raise the glass herself. Jason had to help her sip. Even so, it was like a small taste of independence.

That feeling didn’t last long, however. Grace needs round-the-clock care, with four nurses on split shifts to tend to her, as well as a nanny to care for her son.

Until just a few weeks ago, Grace could not move any of her limbs. Now, she is able to raise her right arm a few centimetres to almost shoulder height. It’s a triumph of sorts, but a small one. She is too weak to grip even a tissue.

In other circumstances, even such a small advance might be cause for rejoicing. Yet for Grace and Jason, it has only added to the relentless uncertainty that swirls and eddies around them.

Related: Meeting epidural victim Grace Wang

“We try to get our normal life back as much as we can,” says Jason. “But with people here all the time and Grace’s physical condition, we have lost the emotion and spontaneity and the passion that most married couples share.

“We want to have our life back as a normal couple. A stupid mistake permanently deprived us of all our rights as a normal husband and wife, as normal parents to enjoy our life with our son.

“My son will never know the feeling like the other kids when his mother cuddles him. I miss the feeling we shared when we held each other and the passionate hugs we had before. I am afraid that I might lose that feeling forever. I wish God would give us our other life back.”

Read more of this story in the January issue of The Australian Women’s Weekly.

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