Sister

“Get larger and larger and then have a baby.”

You sounded so childish; you were acting so childishly, how could you possibly become a mother?

“It’s happy news; don’t be cross.”

“Did she ever consider an abortion?” Mr. Wright asks.

“No.”

“You were brought up as Catholics?”

“Yes, but that wasn’t why she wouldn’t have an abortion. The only Catholic sacrament Tess ever believed in is the sacrament of the present moment.”

“I’m sorry, I’m afraid I don’t know …”

I know that it’s of no use to the trial, but I’d like him to know more about you than hard-edged facts in black three-ring binders.

“It means living in the here and now,” I explain. “Experiencing the present without worrying about the future or cluttering it with the past.”

I’ve never bought that sacrament; it’s too irresponsible, too hedonistic. It was probably tacked on by the Greeks—Dionysus gate-crashing Catholicism to make sure they at least had a party.

There’s something else I want him to know. “Even at the beginning, when the baby was little more than a collection of cells, she loved him. That’s why she thought her body was a miracle. That’s why she would never have had an abortion.”

He nods, and gives your love for your baby a decently respectful pause.

“When was the baby diagnosed with cystic fibrosis?” he asks.

I am glad he called him a baby and not a fetus. You and your baby are starting to become more human to him now.

“At twelve weeks,” I reply. “Because of our family history of CF, she had a genetic screen.”

“It’s me.” I could tell that at the other end of the phone you were struggling not to cry. “He’s a boy.” I knew what was coming. “He has cystic fibrosis.” You sounded so young. I didn’t know what to say to you. You and I knew too much about CF for me to offer platitudes. “He’s going to go through all of that, Bee, just like Leo.”

“So that was in August?” asks Mr. Wright.

“Yes. The tenth. Four weeks later she phoned to tell me that she’d been offered a new genetic therapy for her baby.”

“What did she know about it?” asks Mr. Wright.

“She said that the baby would be injected with a healthy gene to replace the cystic fibrosis gene. And it would be done while he was still in the womb. As he developed and grew, the new gene would continue to replace the faulty cystic fibrosis gene.”

“What was your reaction?”

“I was frightened of the risks she’d be taking. First, with the vector and—”

Mr. Wright interrupts. “Vector? I’m sorry I don’t …”

“It’s the way a new gene gets into the body. A taxi, if you like. Viruses are often used as vectors because they are good at infecting cells in the body, and so they carry in the new gene at the same time.”

“You’re quite an expert.”

“In our family we’re all amateur experts in the genetics field, because of Leo.”

“But people have died in these gene therapy trials, Tess. All their organs failing.”

“Just let me finish, please? They’re not using a virus as a vector. That’s the brilliant thing about it. Someone’s managed to make an artificial chromosome to get the gene into the baby’s cells. So there’s no risk to the baby. It’s incredible, isn’t it?”

It was incredible. But it didn’t stop me from worrying. I remember the rest of our phone call. I was wearing my full older-sister uniform.

“Okay, so there won’t be a problem with the vector. But what about the modified gene itself? What if it doesn’t just cure the CF but does something else that hasn’t been predicted?”

“Could you please stop worrying?”

“It might have some appalling side effect. It might mess up something else in the body that isn’t even known about.”

“Bee—”