“There is a newborn screening test for cystic fibrosis, but it does miss picking up on a small percentage of babies that do have the disease.”
“What makes you think she’s got it?”
“We conducted a sweat test, which showed abnormal levels of sodium and chloride. A positive sweat test is a key indicator. But we’ll repeat the test tomorrow. Her chest X-ray showed a lot of mucus in her lungs. What you’ve told us about her history of illnesses also adds to the picture. Lilly’s symptoms are similar to many childhood conditions, and, as I said, we’ll need further testing to be certain.”
“So, if she does have it, what happens now?”
She explained and I listened, but I couldn’t grab onto any of it. All I wanted to know was, when will she get better? What bag of medical tricks do you lot have up your sleeves?
But they kept shaking their heads as they spoke, as though they’d lost their bag of tricks. Lots of words. Lots of head shaking.
Stopping, she eyed me squarely. “Do you understand what we’re saying?”
I exhaled. “I can’t . . . I’ve been up all night. I’m trying, but you’re going to have to put it in a simpler way. Can you do something for her now, or will she outgrow it?”
“Gray,” she said. “If she has CF, she’ll always have it. But with good medical treatment and care, she has every chance of living a full life.”
“So, she’ll be okay? I mean, if we do everything we can to keep her from getting sick, she’ll be like any other kid?”
“We’ll cover all of that when we complete the tests.”
“I want to know now. If it is this disease, is she going to grow up and have kids and live until she’s a hundred?” Wanting to know the exact details of something was how my mind worked. I was a programmer. I needed to know if Lilly’s system was going to work as expected, or was this bug in her code—cystic fibrosis—going to infiltrate everything and bring the system down?
“I can’t tell you how Lilly’s life will go,” she told me. “Everyone is different.”
“Then tell me about the illness. Don’t leave anything out.”
She nodded. “I’ll keep it brief. The average lifespan of someone in Australia with CF currently sits at around age thirty-eight. Over half live past the age of eighteen, which is a much better outlook than it used to be. Women with CF can have children and do all the normal things, but there is a risk of passing on the disease to their children. Look, I don’t think we should go any further at this point. We just wanted you to know what we’ve been doing and what testing we’re undertaking on Lilly.”
Stunned, I just stared back at her, panic coiling in my stomach.
What if Lilly was in the half that didn’t live past eighteen? What if Willow lost her sister? How was Lilly going to plan her life while facing a life expectancy of less than forty?
Then came the next hammer. Medical costs. The government system would cover most of it, including hospital stays, but not all of the medication and specialists. And there was going to be a lot of those things.
How the hell was I going to get back to work and pay for all this and look after Lilly at the same time?
The doctors wanted to know about Lilly’s mother. Where was she and could I get her to come here to the hospital? they asked. As though I should be able to pull Evie out of a hat. They had no bag of tricks, but somehow I was supposed to have one.
Well, I couldn’t pull Evie out of a hat. She was as gone as a person could get.
They suddenly asked if I wanted to call anyone.
There was just one person I could call. Verity. Evie’s mother. The last person I wanted to speak to.
I stepped from the doctor’s office on unsteady legs.
Willow looked so small sitting on the plastic hospital chair. I’d gotten used to seeing her as my big girl, not the little four-year-old she was. I remembered bringing her to this hospital just after her baby sister was born. She was two then, and when I was cradling the tiny Lilly, Willow had suddenly looked like a giant in comparison.
The nurse who’d been sitting beside Willow gave me a quick, warm smile and headed away.
“When can we take Lilly home?” Willow stared up at me.
I exhaled a breath so tight I felt like I was breathing through a straw as I reached to hold Willow’s hand.
Relax. Relax. Don’t scare her. Lilly isn’t going to die. Everything’s okay. “Honey, she’s going to be here for a bit longer. We want to make sure she’s all better first.”