My friend’s diagnosis of cystic fibrosis has powerfully influenced her life—and mine.
In a widely circulated essay in New York magazine, the writer Jen Gann describes her experience of learning that her newborn son, Dudley, has cystic fibrosis. Had she known of the diagnosis during pregnancy, she writes, “I would have had an abortion.” She decides to sue her midwife for “wrongful birth,” specifically, the failure to diagnose her son’s C.F. in utero, which deprived Ms. Gann of the ability to terminate.
Ms. Gann’s anger and grief, her shock and lack of acceptance, are understandable. She and her family have just been handed a devastating diagnosis. Her world has been turned upside down. Cystic fibrosis is a terrible disease. It causes persistent lung infections and, over time, limits a person’s ability to breathe. In patients with C.F., a defective gene causes a thick, sticky mucus to build up in the lungs, pancreas and other organs. The mucus clogs airways and traps bacteria, leading to frequent lung infections and, eventually, respiratory failure. Cystic fibrosis is also a digestive disease. The mucus in the pancreas prevents the release of enzymes that allow the body to break down food and absorb essential nutrients.
Ms. Gann’s essay raises many troubling questions because, if she wins her case, it will mean that the courts essentially agreed that it would be better if her son had not been allowed to live. Disability rights advocates express concern that this is tantamount to saying that lives lived with cystic fibrosis are less valuable, less worthy of care—in a word, “unfit.”
These struggles are not new. Once openly discussed in early 20th-century America as eugenics, it was widely accepted as a moral duty for mainline Protestants and progressives to avoid having diseased or deformed children. The American Eugenics Society referred to them as “people born to be a burden on the rest.” After World War II and the horrors of state-sponsored eugenics in Germany, this proposition was reimagined as “genetic counseling.” Americans no longer speak of “improving the quality of the race”; we simply do it as a matter of course.
As Amy Laura Hall writes in her book Conceiving Parenthood: American Protestantism and the Spirit of Reproduction, “The core assessment of burden and birth led to an arsenal of biotechnological tools to plan, evaluate and enhance children and to measure the worth of a given family—tools that today have become standard political equipment.” After the Second World War, the eugenics movement became less coercive, and there were fewer forced sterilizations of “imbeciles,” criminals and racial minorities. Instead, producing “better” children, became a voluntary, parental and social duty. “Responsible parenthood” came to mean discriminating reproduction and the scientific pursuit of the good or comfortable life. Part of this meant using prenatal testing and abortion to prevent the births of certain “kinds” of people, part of what Pope Francis condemns as the “throw-away culture.”
His mother imagines looking into his eyes and saying, “I’m sorry I didn’t save you from your own life.”
Jen Gann loves her son and imagines that removing people with C.F. from the population is the merciful and compassionate thing to do. She believes that to let such persons be born only to suffer is itself immoral. She states, “The women who willingly made choices that were never presented to me and chose a child’s suffering [i.e., to let their children with C.F. be born]: Sometimes I hate them.” Ms. Gann sees terminating prenatal children with a disability or disease as reducing the overall suffering in the world.
Which brings us back to Ms. Gann’s lawsuit. Would the world be a better place if there were “no Dudley”? Would Dudley, his mother and his community be better off had he been terminated in utero? For now, “healthy” adults will decide, as Dudley is a toddler and cannot speak on his own behalf. We can only imagine what he will someday tell his parents or the courts. His mother imagines looking into his eyes and saying, “I’m sorry I didn’t save you from your own life.”
Life With C.F.
My own experience, albeit second hand, of cystic fibrosis has powerfully influenced my life. My childhood best friend, Libby, and her older sister, Sam, are in their mid-30s and living with cystic fibrosis. Memories of my time with Libby and her family are the ones that burn the brightest from my childhood, the ones I return to again and again.
As an elementary school kid, Libby would come over for dinner at my house, toting a baggie of enzyme pills. I remember her licking her fingers and dipping her hand into the bag. A capsule would stick to each finger. She would lick them all off and swallow them down with a single gulp. There was not a hint of embarrassment or self-pity. Libby was not her cystic fibrosis, she was Libby, mature and independent, joyful and loving. A force.
Our culture can make illness or disability worse by reducing inherently valuable and irreducible human beings to their diagnoses. Multiple lines of research demonstrate that schizophrenics, for example, have better outcomes in non-Western countries, where their treatment options are limited but the culture is more accepting. In places like Ethiopia, people experiencing psychosis often remain in their communities as eccentrics, instead of being exiled as outcasts. In other words, it is easier to heal when you are not treated as a leper. Cystic fibrosis is a terrible disease. We should want to treat and cure it. But Libby, like Dudley, was not and is not her disease. She is Libby.
Libby and I had a happy childhood. We had sleepovers at each other’s houses and sold lemonade on the corner. We wrote plays about twin sisters separated at birth and acted them out for our parents. We put on music and choreographed dance routines.
One summer, when Libby had to go to the hospital for a weeklong “tune up,” my dad dropped me off at her room every morning on his way to the office and picked me up every evening at dinner time. Libby knew all the nurses and doctors and would walk around with her IV pole as if she ran the place. We played checkers and ate the snickerdoodles my mother had sent. Libby says of the hospital, “My thought was, I get to hang out with people who really care about me, but of course the other piece of that is that you’re in the hospital enough to have friends there.”
Being religious means believing that, despite appearances, no human life is worth more than any other.
I remember sitting with Libby while she did a nebulizer treatment or her parents gave her “Pat Pat” (manual percussion on her chest to strategically rattle the mucous in her lungs). Afterward, we went horseback riding in the mountains. In the open spaces, we were allowed to gallop. It was thrilling to be 8 years old, your seat out of the saddle, your hair flying in the wind. Libby’s determined and phenomenal parents fought to make the life she and her sisters had beautiful.
Libby was diagnosed with C.F. at birth and given a 50 percent chance of making it to 18. Her parents already had a daughter with C.F. and knew there was a 25 percent chance of another baby with the same disease, but her mom thought it would never happen again. When it did happen, she thought, “Well, she’ll have a sister who understands.” She was an amazing working mother of three. Always “making lemonade out of lemons.” She now tells other parents of sick kids, “Focus on what they can do, not what they can’t do. Treat them like they’re living, not like they’re dying, and savor every day.”
Libby has indeed savored more days than not. She is now 33 and a bilingual speech pathologist. She spends two days a week making home visits, helping parents create language-rich environments for at-risk kids. She has been married to her college sweetheart for nine years and has two adopted children (4 and 15 months). With C.F., two kids and a job, her days are full, but they are not all hard work. She just got back from a family vacation in Mexico, and the day after we talked she planned to go skiing with her mom. These are not activities in the price range for every family, of course, but her life is hardly one of the unending “pain and disappointment” Jen Gann describes.
I believe Libby’s life would be valuable even if she could not do all the extraordinary things she does.
I believe Libby’s life would be valuable even if she could not do all the extraordinary things she does. And I do not want to romanticize my childhood experiences with her family. Libby remembers seeing tears in her mother’s eyes when she was watching her play at the park. And her mom says she kept her part-time job both because it paid well and had health insurance and also because working outside the home gave her “a break from the pain.”
I do not want to instrumentalize people with health issues. Yet, the fact remains that I had this friend who was and is an amazing person, who has done and continues to do amazing things, and she has cystic fibrosis.
Libby says, “Growing up, I understood that C.F. was something really serious, but at the same time I was just normal. I had best friends and went to sleepovers and felt loved. C.F. was always put in such a nice perspective by my parents. I don’t think I was ever angry or even terrified. I understood it was serious, I never skipped treatments, but somehow, I never thought, ‘I’m not gonna live.’”
Jen Gann cannot imagine people who have two children with the same genetic disease. For her, their sin is multiplied. But Libby thinks having a sister with the same illness “normalized it” and was key to her well-being. She was never alone. She was a part of an “us.”
Even newborns with diagnoses that are “incompatible with life”—do these children not have the same right to love and hospice as children who will have an average life expectancy?
She says: “My parents made choices when I was young to balance normalcy with the innate caution that goes with C.F. They would teach me proper handwashing but then say, ‘Oh sure you can have a sleepover.’ They had this philosophy of, ‘Yes, you’re living with this disease, but you’re living with this disease.’ My mom had an obsession with making our lives as wonderful as possible.” The culture of Libby’s home and access to good health care made it possible for her to imagine and live a lovely life.
Libby is not afraid of obligations or hard work. She says, “Part of having C.F. is this desire, this intention, to make every moment worth it.” She always wanted to get married and have a family. She says, “I remember those conversations that my husband and I had before we got married, that nobody wants to have. I told him, ‘I have a greater chance than other people of not having a full life expectancy.’ And I still remember when he said, ‘The number of days I have with you would be worth it.’ That’s when I knew he was the person I wanted to spend the rest of my life with.”
Libby’s situation is unique. She and her older sister have a rare genetic disease, and yet it is also universal, because none of us knows if the people we love will live to old age or not, will experience a chronic health condition or not, will become dependent on us or not. That is the risk you take when you love someone.
We say, “I don’t want my child to suffer,” and we mean it. But what we do not say is that “I don’t want to suffer.”
When Libby and I were little, we rode inner tubes down the irrigation ditches at her grandparents’ farm. At the end of the ditch there was a barbed wire fence. Her sister would throw us a rope and we would have to catch it—just in time. Part of the thrill was the risk. Maybe the same is true of life.
In the Face of Suffering
Prenatal testing is used to eliminate the “unfit” in utero. As a Catholic, my fears about prenatal testing being used to eliminate the “unfit” in utero will surprise no one. Part of being Catholic is hearing that vulnerability and suffering are a part of human life and that human life is sacred. Jesus stands with the rejected and tells his followers that they, the widows and the orphans, are to be favored. Being religious means believing that, despite appearances, no human life is worth more than any other. I dread the cross, but I was also raised to expect it.
Jesus is a strange God who chooses to come into the world, not with a show of force, but with a whisper. As Caryll Houselander writes in her book The Reed of God: “The psalmists had hymned Christ’s coming on harps of gold. The prophets foretold it with burning tongues, but now the loudest telling of His presence on earth was to be the heartbeat within a heartbeat of a child.” Why come into the world as the tiniest and most vulnerable of humans?
My friend Libby was raised Episcopalian, but does not subscribe to any particular religion now. She is “faithful” but not religious, and politically progressive; yet she too is uncomfortable with the way prenatal diagnoses are sometimes used to hastily label a child. She has come to these conclusions from her lived experience, not from some inherited or handed-down tradition.
When it came time for Libby to start her own family, though she could have conceived, she chose to adopt. She says of prenatal testing for genetic abnormalities: “It just feels wrong. You’re looking at this in a one-dimensional way, rather than understanding that this will be a part of a person’s story, rather than someone’s whole story.”
Ms. Gann seems to see it from the opposite side, that Dudley’s diagnosis is his whole story, or at least a large enough portion of his story to justify his termination. That perspective, frightfully, leads us to the position of antinatalist philosophers like David Benatar, who argues in his book Better Not to Have Been: The Harm of Coming Into Existence, that it is immoral to have children at all. Mr. Benatar writes, “While good people go to great lengths to spare their children from suffering, few of them seem to notice that the one (and only) guaranteed way to prevent all the suffering of their children is not to bring those children into existence in the first place.” Mr. Benatar’s answer to the problem of human suffering is not love, it is non-being.
Of course, people who differ from others often experience suffering in the form of bias and discrimination: African-Americans, gays and lesbians, intersex people, people with learning disabilities. If we follow Mr. Benatar’s logic, who is to say which “types” of biological and cultural diversities are worth preserving and which should be exterminated?
Even newborns with diagnoses that are “incompatible with life”—do these children not have the same right to love and hospice as children who will have an average life expectancy? As Tom Stoppard writes of the death of a child: “Because children grow up we think a child’s purpose is to grow up. But a child’s purpose is to be a child. Nature doesn’t disdain what only lives for a day. It pours the whole of itself into each moment.”
As the philosopher Alasdair MacIntyre reminds us, there are not actually two classes of people, healthy and unhealthy, fit and unfit. We are all lacking in some way.
As an adoptive mother, Libby was faced with these questions before she even met a birth mom. She says, “We had to check yes or no—would you accept a baby with this condition, everything from a missing digit to really serious stuff. But growing up with my experience of having one of those things that’s listed as a possible condition made me look at that list and say, ‘Absolutely, we would love a child with any of those quote unquote special needs.’ It becomes personal. I could absolutely love a child who has some kind of cloud over their existence.”
It would be understandable if Libby wanted an easier path, given all she has had to go through, but Libby is not a normal person, she is an exceptional one, more resilient, more empathetic, more joyful than many who have never been sick a day in their life.
She says, “Of course, I’m as healthy as I am because of the changes and advances in science, and yet that same science can be applied in ways that cause harm. My parents had my sister first, who was diagnosed with C.F., and they knew there was one in four chance of me having the disease, and of course they hoped that wouldn’t happen again. But thank goodness they would have never terminated a pregnancy with C.F., because I wouldn’t be alive. And now 33 years later, people—and not just myself—say, ‘What a beautiful thing.’ I think testing takes away this opportunity for people to find their strength. I don’t think you know how strong you are until you don’t have another choice. If we make choices to override that, then we miss out on an opportunity for things that grow us and change us for the better.”
The Pressure for Perfection
Libby’s story is not intended to take one instance and use that to gloss over the complexities of a very difficult issue. It is not meant to minimize the real suffering and pain that others do experience. One thing that is clear in all of this is that Jen Gann is suffering too. And unfortunately, part of what she is suffering from is shame. Our culture’s ideas about perfection through technology run so deep that they become difficult to examine. Ms. Gann blames herself for the stigma of parenting a sick child. She writes, “I feel a deep responsibility.” Ms. Gann has been deprived of the ability to succeed as member of her peer group, a peer group that does not see sickness, frailty or interdependence as part of the human condition. She details the hours every day lost to Dudley’s care. She is not part of a community that shares the load.
Our individual choices collectively create a culture that is more or less accepting of difference, more or less tolerant of human beings, burdens and blessings both.
What has helped make Libby’s life so beautiful is the culture of love and acceptance that her parents and her sister and her community have created. This is often not the case. With genetic counseling, elective abortion for the full 40 weeks and a culture that is uncomfortable with human weakness and difference, parents of ailing children suffer twice—once from their child’s pain, and again because they are seen as responsible for it.
In 1999 Robert Edwards, who helped perfect in-vitro fertilization, said: “Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.” We are back to the logic of eugenics of “fit” and “unfit” humans. In 1957 Margaret Sanger, the founder of Planned Parenthood, used the same language of social sin. She said, “I think the greatest sin in the world is bringing children into the world that have diseases from their parents.” In this culture, the parents most in need of support and assistance are not honored and sustained by networks of care but are isolated and blamed.
In the United States, the consumerist notions of choice, efficiency and convenience run deep. We used to debate the morality of terminating anencephalic babies (those born without parts of the brain or skull); now, as the logic of the human as the ultimate consumer continues to unfold and we see ourselves acting as the final arbiter and curator of our own lives, are we going to start debating the morality of terminating babies in utero if, for instance, they have a genetic predisposition to obesity?
Real change would also require a change of heart.
We say, “I don’t want my child to suffer,” and we mean it. But what we do not say is that “I don’t want to suffer.” In our country, suffering is not seen as redemptive; winning is. As President Donald Trump reminded us when he mocked a reporter with disabilities, ours is a country divided into winners and, as he calls them, “losers.” We may criticize such outright cruelty and prejudice against people with disabilities or those with chronic illness, but there is a slippery slope between making fun of people with disabilities or illness, dehumanizing them and killing them before they are born. How different are political conservatives and liberals on this issue, when, according to Kaiser Permanente, 94 percent of pregnancies in the United States with a C.F. diagnosis end in abortion? Of course, there are partial political solutions: universal health care, a robust social safety net, laws restricting late term abortions. These are all good things. But real change would also require a change of heart.
In Far From the Tree, Andrew Solomon writes that affluent parents are more likely than poor parents to abort a child with a prenatal diagnosis of disability or chronic illness. The pressure parents face is related not only to resources, but also to the fact that it can feel like nearly everyone in one’s peer group thinks that abortion is the most humane option. David Dobbs writes this way about people fighting the stigma and isolation around mental illness: “Culture profoundly shapes every aspect of how an illness develops, from how the afflicted experience it, to how others respond to it, to whether or not it destroys you or leaves you whole.”
As the philosopher Alasdair MacIntyre reminds us, there are not actually two classes of people, healthy and unhealthy, fit and unfit. We are all lacking in some way. All of our bloodlines carry blessings and burdens. And the line between troubled and untroubled is porous. Each of us is just one diagnosis, natural disaster or accident away from hard times. Perhaps there is nothing for it except communities of people who embrace us, all of us, knowing where the journey leads; people who promise to bring us soup and take us to the mountains, or sit with us when we are suffering and distract us a little from the pain; people who promise not to leave us or blame us for being human, which is to say contingent and not ultimately in control.
In the end, our medical and reproductive choices are not simply private and personal. They do not affect only ourselves. We look around at other people to figure out how to live, even who should live. Libby’s life makes me want to be more generous and courageous. Ms. Gann’s essay makes me afraid. Our individual choices collectively create a culture that is more or less accepting of difference, more or less tolerant of human beings, burdens and blessings both.
As an adult and a working mom with cystic fibrosis, Libby says she has learned the “importance of being willing to accept help.” Something as simple as letting a stranger hold the door if she is juggling a million things or having her mom come once a week to help with the kids. She says: “My husband, Will, does the lion’s share of the nighttime duty. It’s not tit for tat. It’s everybody doing everything they can.” It’s not 50/50. It’s 100/100. It’s not, “This is my body.” It’s, “This is my body given up for you.”