‘Your baby has cystic fibrosis’

At almost 6 months old Anna weighed only a touch more than 4kg. It was her second recorded weight loss that had her bundled up and sent in for testing early Tuesday morning. For the next three days Anna whimpered and wailed through the endless poking and prodding of needles and tubes. They were also doing sweat tests, her mom Penelope told us, as there was just the slightest of chances she might have cystic fibrosis. The doctor had asked Penny if Anna's skin was salty. 'So salty, it would burn my lips,' she confirmed. But the chances were so slim.

It was late Thursday night when I fetched Penny from the hospital. There was still no news and Neil had finally convinced her to leave and get some rest. We went to our friend Sherry's and sat around the table sorting through the options of what could be wrong, deciphering the words that had been tossed about by doctors and nurses and the consequences of all the tests she was going for.

We assured ourselves that it was probably something small, something insignificant and easily remedied. This was Anna, for crying out loud … we had her life pictured until the age of 20 at least – which school she'd go to and whether she and Max, Sherry's little boy, would ever hook up. At worst, it was probably a bad allergy. I mean, she really was just that kind of baby.

Since Anna joined us we'd come to know her as fragile. Pale and small, she was mostly niggly, crying often and in a state of what seemed like perpetual discomfort. We all put it down to character, and in the beginning so did Penny and Neil.

But after five months Anna became noticeably worse. She'd stopped playing, stopped developing, and had basically stopped eating. By time the Anna was rushed in for tests she could only manage about 40ml per feed and then only at a struggle. Her weight loss was clearly more than body type or a dislike for breast milk.

When Sherry took Penny back to the hospital the next morning it seemed almost as if the worst was over. Anna looked so much better, she'd eaten and slept more, cried less. But the results had come back: Anna definitely had cystic fibrosis.

Over the next few days, Penny and Neil came to grips with paradox. Anna had a life-threatening disease and yet, now that she was receiving the proper meds, she had never been healthier. It helped soften the reality somewhat. Penny called it the natural high of 'Everything Will Be Ok'.

But the fact of Anna's mortality still remained. For a while Penny grappled with the thought that she and Neil had created a child that wasn't 100% healthy. As if this was something they had done wrong. Sherry told me later that when you find out that your child has a life-threatening disease or will be challenged in any way, you go through a period of mourning the loss of the child you thought you would have, and the life you had wanted for it.

And then you just get on with it.

Penny and Neil went for their first 'briefing' at the Red Cross the other day. 'It was a horrible wake-up call,' Penny told me after. 'But I imagine, and hope, it'll get easier as time goes on, and we'll learn better how to live in the moment and enjoy her for the time we have.'

Anna's new life lies ahead of her now, one will filled with doctors, therapists, medication and machines. But it will also be filled with love, family and friends.

What is cystic fibrosis?
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