I Have a Wanted Pregnancy, And Yet I’ve Received Pressure to Un-Want It: Who or what determines quality of life?
The following is reprinted with permission, from Verily.
I am a happy mom to four kids—three already born and one on the way. As a fourth born myself, it is a special pregnancy for me, even if one of my least favorites in the nausea department. Some of the greatest gifts I’ve received in life are my siblings, and so I’m thrilled to be able to add another for my kids.
This pregnancy was not a “mistake.” My husband and I marvel at the joy our kids have brought to our lives. It is nothing short of a cosmic event to welcome a new child into the world and get to know them as they grow up in front of our eyes. While my husband and I have experienced parenting challenges like most families, we’ve also developed a partnership through our parenting years that has helped us and our children thrive. Through effort and consistency, we have healthy perimeters for sleep and boundaries for behavior that have resulted in three happy, well-adjusted kids that we love to listen to and help flourish in their own unique ways. In sum, my husband and I feel zero overwhelm and much excitement to be adding to the brood.
So I was frustrated when I attended my latest pregnancy ultrasound and a doctor pressed me to doubt my own desire or capability to add this latest person to my family. Other moms out there may know exactly where this story is going, but for those uninitiated in the world of genetic testing, here is the play-by-play of my recent visit.
The 20-week ultrasound is a routine radiology appointment in which a technician uses imaging technology to view the fetus in the womb and estimate size and weight measurements of the growing baby. Taking place at the halfway point of the pregnancy, the appointment usually takes more than thirty minutes with the mom lying on an exam table, while the technician monitors the baby’s heartbeat, brain development, length of limbs, and other details relating to the baby’s internal organs. This is also commonly when an ultrasound technician can identify whether the child has boy or girl parts.
Having gone through this three times already, this experience feels less new and more routine for me, but there’s still a thrill about seeing the little child on the screen, making out his or her little face and hands. As has happened the last few times I’ve gone, the ultrasound tech switched from the standard silhouette imaging into 4-D imaging for the baby’s face, which is always something to behold. But most of the rest of the visit is spent staring at a wiggly baby in black and white as the tech takes routine measurements, with the occasional side note from the tech saying, “That’s a great heartbeat,” or, “She’s an active one, isn’t she!”
After about 30 minutes of staring at my child’s every little part, on the gray screen, I am told we’re all done and that a doctor will come by in a few minutes just to take a look at the information the ultrasound tech recorded and answer any questions. “Don’t worry, this is procedure for the doctor to come in at the end; it doesn’t mean anything is wrong; your baby looks great!” the tech assured me as she stepped out.
But when the doctor joined me in the room she appeared to have one goal: to focus on the possibilities that there could be something wrong with my baby, even though the tech said everything on the ultrasound looked great.
“You are a carrier for cystic fibrosis,” she said, “and we don’t have your husband’s results. If he came in for a blood test, we could know if he is a CF carrier too.” I was unfazed, since I had heard this already from my OB-GYN.
“I know,” I responded. “It’s not covered by my current health-share program for him to get tested, and I don’t really need it, because it won’t make a difference to me.” She responded by telling me that I could still find out how much it costs to pay out of pocket for my husband’s blood test, and I could still pursue it despite not having it covered.
One of my sisters and her husband are both CF carriers, and they’ve had four healthy children despite being told they were at high risk. It turns out all that knowledge did was create unnecessary anxiety, when she already knew she wanted each pregnancy to go to term. We all hear the occasional story of the person who receives a false prenatal diagnosis and whose child is born healthy, as, for example, in a recent Humans of New York story. If we don’t want innocent people killed on death row, how could I consider ending the pregnancy for a child who I don’t even know for certain is diseased? And when did being diseased become a crime?
It turns out, for many, prenatal genetic testing these days just happens, and if you are over 35, they consider it routine because you’re of “advanced maternal age.” A perk is that a blood test can also tell you the baby’s sex earlier than an ultrasound; I had had it done with my last baby, which is how I ended up finding out I was a CF carrier. But it’s not like I was exactly looking for that information.
“The only reason I would want more information is if it would inform my choice of where to give birth to my baby for the best care,” I said. “When I was pregnant with my second child, I was living in a small town, and my OB-GYN told me that it would make a difference to know genetic information; if my child had Down Syndrome, for instance, she’d send me to a big city children’s hospital that could help with any post-birth complications the child might need specialized care for.” But now that I’m living in a big city and getting care at a top hospital in the area, that doesn’t seem as applicable.
“Oh, we can handle everything here at this hospital,” the doctor assured me.
“Okay, great!” I said, trying to defuse some of the tension in the room and move on.
But the tension stayed. This doctor wouldn’t let it go. I wasn’t concerned about CF risk, but she appeared to be very concerned for me. She informed me that even a good ultrasound like I just had would not be able to reveal if my child had cystic fibrosis. I wouldn’t know the likelihood of that unless both my husband and I had had blood tests to reveal if we were both CF carriers, she repeated. Even then, however, I wouldn’t know with certainty; I’d just have some percentage chance that my active, happy-heart-beating baby might have cystic fibrosis. And there would be nothing we could do about it . . . except what this doctor seemed to be suggesting I should get all this information for: to consider the option of having an abortion.
There was an awkwardly high amount of tension in the room. I had just watched my living, squirming baby for a half hour, learned she’s a girl, and practically named her in my head. And here was a doctor, suggesting the possibility of CF would be essential information for me to determine whether to continue this pregnancy.
I suddenly felt a strong sadness for people with cystic fibrosis. It broke my heart to think that there are people (like this doctor, it would seem) who think people with cystic fibrosis are accidents of existence, the mistake of parents who failed to get CF screening tests and dutifully remove them from the gene pool, rather than people with lives worth living. I was starting to sense not just a judgment against people with CF but also against people who don’t get their CF screenings—a sense from the doctor that my husband and I were being irresponsible by carrying this pregnancy with the unknowns that seemed to trouble her.
I know cystic fibrosis is a very life-altering and challenging disease. Respiratory issues are some of the most challenging to live with, in my mind, and a child with CF has this condition her entire life, along with shorter life expectancy. It’s not easy on a child or parent to live with CF. But I am in no position to determine whose life is worth living, and I welcome the unknowns of parenthood as a part of what I’m taking on. If I had CF, I would certainly hope my mom would do her best to take care of me, and I aspire to be that mom as well.
Part of me wanted to shut down the conversation by calling out the doctor for suggesting I consider terminating this pregnancy on the chance of disease, when there are infinite hardships my child could face in life (and let’s be honest, she, like all human beings, will face some hardship). Somehow, in the moment, it all seemed arbitrary whether hardships can be predicted before birth or not—would this same doctor, I wondered, suggest suicide to a patient who developed a challenging disease later in life?
But I couldn’t bring myself to say aloud the word abortion. I couldn’t utter it in the same room with my little baby on the screen just moments earlier. I was afraid just speaking it would create an unstoppable eruption of tears. My emotions are already on another level with pregnancy hormones these days, and I needed to keep myself together.
I decided to keep the focus on health care and to hope the doctor in the room cared about my baby. “Would knowing the chance of CF for my child give us a head start in providing care for her?” I asked.
“No,” she replied. After a pause, she added, “Your pediatrician would inform you of care options after birth.”
“Okay, thanks,” I said to signal that it was time for us to wrap this up. When I stood up from the exam table, she stayed one moment longer, looking me straight in the eye, and asked me if I had any other questions—the second time she asked this. It seemed impossible to me that she couldn’t read my clear messaging that I wanted this baby, whatever her CF status. Why was she drawing this out further? My face read loud and clear that I was done with this conversation, and I repeated, “No, you’ve answered all my questions.”
I couldn’t help but think she had some imaginary story in her head, contrary to everything I’d said, that I wanted to end this pregnancy if there was CF risk, that, if only my husband got tested and we knew, I would do a 180. I got the impression that in her mind I was a victim to a husband not getting his CF results when I wanted him to. And later, when I was struggling to care for a high-needs child, I’d look back at this moment and wish I had just snuffed this child out of existence while I still could have. It was as if she was assuming I wasn’t truly acting according to my own wishes but was being controlled by some oppressive authority—my untested spouse? my moral convictions? Whatever it was, she was trying to out-gun it.
Later, I wondered if I had imagined how much she appeared to pressure me to consider terminating my wanted child. But in the visit notes I read later on my patient chart online, I saw she had typed on my record, “the patient is committed to the pregnancy.”
Ya think? Perhaps this sort of line of questioning and note protects her as a doctor from further liability—like a wrongful birth lawsuit if the baby is born with a disability. But after having attended half a pregnancy worth of prenatal appointments to pursue this pregnancy, and having given zero indication of wanting to end my pregnancy over these months, the exchange felt very out of place. The whole experience made me think, if the 20-week ultrasound appointment has turned into a halfway point of offering abortion one last time, to moms carrying advanced and nearly viable babies, then we should be given a warning that it’s coming. Because if I could have put it in writing to avoid this entire conversation, I would have.
I couldn’t stop thinking about the doctor’s persistence in the days that followed. Rather than trusting this doctor, I felt the need to protect myself and my baby from her. Thankfully, she was not my regular OB-GYN but just one of the doctors to follow up after ultrasounds. But how many vulnerable moms had she counseled like this? If a mom was feeling more worried and less capable to take on a challenging child, would this doctor push her over the edge into ending the pregnancy, even if she wanted the child? Human doubts and fears exist, but we don’t base permanent health decisions on them. In my view, this doctor went beyond providing information to inducing such fearful emotions, exploiting a mom’s worries to lead patients in a one-way direction.
While this doctor seemed unable to fathom my apparent lack of interest in knowing the exact probability of my child having CF, I was struck by her apparent lack of interest in the life of a person with CF and presumably other serious conditions, in how fully human and rich such a life can be. I know this doctor is not alone in her thinking. Indeed, our culture (myself included) is deeply uncomfortable with the idea that weakness and suffering are a part of human life.
A couple years ago, the women’s publishing outlet Vela Magazine ran an article that went viral, called “SuperBabies Don’t Cry.” The author, Heather Kirn Lanier, now TED Talk alum and author of the 2020 memoir, Raising a Rare Girl, shared that after giving birth to a child with a chromosomal abnormality, she began a journey of facing her preconceived notions about health and humanity. “I’d always privileged an able body. . . . I’d believed I could control the body because I could not stomach the truth: that the body is fragile, ephemeral.”
Once she was face-to-face with her child who had a rare and devastating disease, Lanier confronted these deeply embedded perceptions. She ate all the right foods and did all the right things when pregnant because she wanted a “SuperBaby.” “We want a SuperRace because we want to eradicate absolutely everything that terrifies us,” Lanier wrote. “We want SuperHumans so we can transcend that thing we are: human. But a SuperHuman would lack that crack in everything through which, as Leonard Cohen sang, the light gets in. There’s something in our suffering that we need.”
One of my closest nieces was born with blindness. Now 19 and a social-media activist for special needs awareness, she overheard me sharing my bad ultrasound experience with my sisters. “Cystic fibrosis isn’t even as bad as it used to be!” she exclaimed. “Life expectancy has gone up from twenties to forties, and many treatments are helping!” She was irate that someone would try to suggest to me that a CF child was one whose life was not worth living.
In her Vela article, Lanier shows how prevalent this dehumanized view of sufferers is:
Hollywood storylines typically assign suicidal tendencies to quadriplegic people (see bestselling novel turned blockbuster hit, Me Before You) despite the fact that the vast majority of people with spinal cord injuries report good qualities of life. This response to disability is so pronounced in our culture that Princeton ethicist Peter Singer can still keep his job when he argues that children born with disabilities can ethically be killed before a certain age. Even babies with hemophilia. Why? Because, he says, they suffer and cause suffering:“[T]he total amount of happiness will be greater if the disabled infant is killed.”
Claire Wineland, a social media personality who in 2018 died of cystic fibrosis in her twenties said in a video: “You can be in pain and yet you can see beauty, and that’s what makes life so incredible.” After her death, her foundation announced the news alongside another quote of hers: “Death is Inevitable. Living a life we can be proud of is something we can control.”
I have many unknowns about my future child. But I would like to show up for her and care for her the best I can, no matter the contents of her medical chart. No matter her challenges, I hope she’ll live a life she can be proud of. By welcoming this baby with all the unknowns each human life comes with, I am trying to do the same.
To learn more about how you can support treatment for people living with cystic fibrosis, visit the Cystic Fibrosis Foundation.