first person

How Do You Tell a Stranger Your Baby Has a Terminal Disease?

Photo: Marc Romanelli/Getty Images/Blend Images

The sign is small, maybe a few inches by a few inches. A friendly-looking bear with his hand over his stomach sits next to a rhyming poem. “I have cystic fibrosis / so please be fair / your germs are more / than I can bear,” which hovers over an imperative: “Please DO NOT touch the baby.” For just under ten dollars, you can purchase this sign and fasten it to a stroller or carrier or wherever anyone nearing your baby might be called off. When I saw it a few weeks after my son was born, I thought it was the saddest thing I’d ever seen.

I’m always proud of myself when I don’t mention cystic fibrosis to people who ask about my son, especially fellow new mothers. Platitudes feel indulgent and not untrue: sleep training is heinous, pumping is a pain, parent groups seem to breed judgment. The omission is invigorating and makes me feel temporarily powerful, an eager participant in the fantasy of how ecstatically grateful I might be, if I had nothing more than five months of sleepless nights to report.

Other times, I lunge forward with the information: It feels like the right thing to do, a strong example to set. There’s no reason for anyone not to know this about him, whether they have to or not. He has health issues, I’ve tried starting with. Once I told someone he has a condition that means he loses too much salt when he sweats. Both are correct; neither is quite right.

Cystic fibrosis is a genetic disease that results in an excess of mucus in the lungs and other organs, usually the pancreas. The primary issue is that the mucus makes lung infections more likely and more damaging. There are other, weirder symptoms, too: Your skin is salty; if you’re a man, you are not sterile but cannot reproduce without medical intervention. Most people with CF need supplementary enzymes to absorb nutrients from food. Rigorous, daily treatment is required to maintain what is referred to as “a normal life.” The disease is progressive and terminal. In the developed world, a child born today can expect to live until about 37. Rates of depression among twentysomethings are high.

Looking at the bear sign now, I’m tempted to buy it or make one of my own. It would be useful: No one should touch my son without washing their hands first, and I’m already tired of lamely making the request. I’ve never hated bold, friendly people as much as I have in the past few months, during which they’ve innocently leaned toward my smiling baby with a finger outstretched, stumbling into a conversation neither of us is prepared for. It’s true that anyone touching an infant should wash their hands first, and what I should do is leave it at that. So what if I’m just another uptight mom? My son dodges a lung infection, no one cries.

Telling people about his disease, however it happens, has been hit or miss. It’s a lot to expect of people, to have some perfect reaction. I try to remind myself of that, especially when a moment occurs that could go either way. Someone said my son’s daily treatment “doesn’t sound so bad”; someone else reminded me everybody dies. My favorite reaction came from a friend — the person responsible for introducing me to my husband almost ten years ago — who simply burst into tears.

The most helpful words came from my own mom. We were sitting across from each other at my kitchen table, her grandson napping in the other room. I had my hands over my face and had to keep wiping my eyes, the words I was using to say how angry I am coming out in measured gasps. You should be angry, she said. You absolutely should be. She said nothing about it being “okay to be angry,” which is an important difference.

Like a baby, I’ve whined about how no one understands what this feels like. Some days I just want to sit down with another mother who knows the same mix of fury and grief and heartbreak and dread. I want to say how fucking jealous I am of people with healthy kids, and laugh at them, their idiotic, temporary problems like sleep, or breastfeeding struggles, or trouble adjusting to parenting. Of course other people have sick kids — or sicker kids, or kids who have never been well — but I don’t know any of them and haven’t gone looking. My reasons aren’t great: I don’t want to wear an ill-fitting pastel shirt and go on a walk in the name of a disease I didn’t know much about half a year ago, I don’t want to be aligned with anyone who uses the words “strong” or “fighter” to speak about their unwell child, I don’t want to cry more than I already have in front of strangers, I don’t want the reason for all this crying to be permanent. Once I accept that it is, I can befriend other mothers like me, and we can spend time together the way we wish.

My son, an actual baby, will not have the same opportunity. My guess is he will seek out other people with cystic fibrosis, people who can understand better than his parents and friends what his suffering feels like. He can find them online, and they can talk on the phone as much as they want. What they can’t have is face-to-face contact; they’re too likely to be harboring CF-specific germs and to pass those germs to one another. At its own outdoor events, the Cystic Fibrosis Foundation recommends “all people with CF maintain a safe 6-foot distance from each other at all times.” For events taking place indoors, the policy is to invite one person with CF at a time.

The waiting room at the children’s pulmonary center is an unavoidable exercise in stress. You indicate to the receptionists you have a CF patient; sometimes you ask for a new pediatric mask because the baby threw his on the sidewalk. Then you get shuttled to a hallway, or a corner, anywhere free of the other kids with masks. Doctors moving between patients don fresh surgical gowns, gently reminding everyone why. CF patients are only seen on certain days, between which the exam rooms are thoroughly sanitized.

Deep into some early night, I read Tumblr posts written by young cystic-fibrosis advocates. In a stubbornly adorable way, they refer to each other as “cysters” and “fibros.” One 19-year-old young woman wrote how her best friends were people with cystic fibrosis she’d met online, and wished more funding were dedicated to finding a way for people with the disease to share the same physical space. She felt mostly content with these relationships taking place online, but she’d been thinking about weddings lately, and how her best friend — who also has CF — could never be a bridesmaid in hers.

There’s nothing not heartbreaking about it: These kids who share the same stupid disease can’t play together or have a sleepover where they’re not the only one inhaling medication through a nebulizer, or strapping themselves into a medical vest to break up the mucus forming in their lungs. In the United States, there are about 30,000 known cases of cystic fibrosis. That’s not a lot of people. But, I wonder, if you’ve never spent time with someone who knows what it feels like to be you, does that number feel even smaller?

Infant scans for cystic fibrosis have only been around for about 15 years. Without one, it’s possible my son would have gone undiagnosed for quite a while. He might have even made it to preschool before we found out. He would have had years without anyone pounding his chest in the morning, strapping a nebulizer’s mask over his mouth and nose every night, more chest pounding right after; without doctors’ appointments where the team numbers eight and a social worker gives parents a sheet of paper to keep everyone straight. He would not struggle to cry, scream, smile, laugh, or suck his thumb unencumbered while receiving treatments. There would be no pulled-aside conversations with his caretakers, teachers, the parents of other babies his age. It’s a nice idea, until you think about the years of his life potentially shaved off by the missed opportunities for preventive treatments.

My husband and I agree we are happier to know, despite the lure of an early childhood unclouded by slow-creeping catastrophe. The truth is that we should have known during my second trimester; the technology exists. In our case, human error meant we didn’t know until after he was born.

Beyond what anyone knows, what we have is a marvel: Our son is a good eater, a good sleeper, eager to smile and laugh. He squeals with delight when his dog trots toward him. Right now his favorite book is Go, Dog. Go! by P.D. Eastman. His breath quickens with excitement when we read it; he prefers to turn the pages himself. Here’s the only platitude I can utter that feels free from any shadow of omission: It’s all going by way too fast.

What Do You Say When Your Baby Has a Terminal Disease?