I was a little over halfway through my pregnancy when my husband and I sat gripping each other’s hands while a specialist gesticulated as he described the options for our unborn baby. We could opt for life-saving surgeries, we could give her comfort care once born but allow her to die without intervention, or we could choose to abort.
“The root of [the word] disaster means a star coming apart, and no image expresses better the look in a patient’s eyes when hearing a neurosurgeon’s diagnosis,” says the late Paul Kalanithi in When Breath Becomes Air. A star coming apart perfectly describes how it felt to be told that our daughter had a severe heart defect that would kill her soon after birth without medical intervention.
When the word abortion was brought into the conversation, my hand involuntarily reached out in a painful appeal to leave that option off the table. He brushed my objection aside, “I know that many parents don’t want to hear about this option, but I legally have to tell you.” He continued describing what abortion would look like in some detail, then the medical team melted off into the hospital.
This moment has haunted me for years, and it has come to mind as pro-choice and pro-life positions are again debated in many states, much of the argument being over “nonviable pregnancies” or “medically fragile fetuses.” Some of the debate surrounding new bills and legislation is over what it looks like to show compassion to parents and to unborn babies when faced with serious, life-threatening birth defects. A baby with any birth defect—life threatening or not—challenges us personally and as a society to examine what our values are. The words we use to discuss such situations are vitally important.
We were soon ushered into our next appointment with a cardiologist that went much differently. She had glasses perched on her nose and wispy blonde hair, and she told us in gentle tones of the wonderful lives she saw so many of her young patients experiencing after the needed open-heart surgeries. She was painting word pictures of laughing children, bikes, and a bright future when her face suddenly bloomed bright red. “I’m sorry,” she stuttered, “I forgot to ask whether you planned on aborting or not.”
We assured her that we weren’t considering that option, and she slowly regained her color. While she was embarrassed by her professional blunder, what she could not know was that her “mistake” was a balm to our hearts. She had revealed how she really felt: Our daughter was worth saving. We made clear that our desire was to save the life of our child, and our hospital did everything they could to advocate for her and save her. Although the graphic description of the offered abortion plagued me, I was extremely grateful to have a hospital and medical team that encouraged life. We remain deeply thankful for their work on our behalf.
When we make decisions about a medically fragile baby, we often signal not only what we think about the status and rights of unborn babies, but we also signal what we think about life, death, and suffering itself. Our cardiologist’s implied viewpoint was that while there was suffering involved in open-heart surgeries, potentially saving a life was worth it.
It was only with sorrow that I would learn that some parents in the exact same scenario were not given the full facts by their doctors and were pressured to abort or told that it would be cruel to put an infant through medical interventions. Doctors bring their own values to the table and parents can be put into a vulnerable position when given slanted advice. While it was jarring to be given our legal rights by our first doctor in such a detached and non-empathetic manner, it would have been truly devastating to be shamed for wanting to save our child’s life through the use of words such as “cruel.”
A rallying cry for the pro-choice crowd is that these heartbreaking decisions should be solely in the hands of a mother and her doctor, and no one else. Yet, when I hear those words, I am reminded of the mothers whose doctor’s words influenced them not to try to save their unborn baby or to assume that abortion was best.
Words matter, and they matter acutely in such moments, often starting with the ultrasound when a birth defect is first found. One small study found that mothers noticed during ultrasounds the verbal and nonverbal cues that their examiner gave, including when the examiner switched from using the word “baby” to “fetus,” long silences, and long waits for information. Another study found that women bearing children with birth defects valued being given not only clear information and privacy but also the sympathy of the person giving the bad news.
A health provider’s words carry weight with patients in less stressful situations too. Words used by doctors and nurses can affect how painful a blood draw is, influence how much pain medication is needed after surgery, and affect the health outcomes of diabetic patients. A study from 2018 even showed being told you had a genetic risk caused physiological changes in participants that were more significant than the genetic risk itself. This was true regardless of whether they truly had any genetic risk. Words carry power.
Paul Kalanithi was a brilliant neurosurgeon who should have been hitting his peak years when he was diagnosed with stage 4 lung cancer. His memoir, When Breath Becomes Air, was written as he battled terminal cancer. As someone who had to grapple with how to deliver bad news to his patients, he also became the recipient of bad news.
He discusses how doctors in “high charged fields met patients at inflected moments, the most authentic moments, where life and identity were under threat.” He describes the relationship of a doctor in such moments as a “power” that required “deep responsibility, sharing in guilt and recrimination.”
Research shows that delivering bad news is one of the most “difficult tasks of physicians” and without proper training, “breaking bad news can lead to negative consequences for patients, families, and physicians.” Because of this, protocols have been developed for doctors so that they can show empathy and sensitivity during hard conversations.
When my husband and I were given the news about our firstborn, both our values and our theological understanding were put to the test. Not just about whether we thought abortion should be a legal or an option but also what we thought about life and living. Often lost in the abortion debate are the hidden values we are displaying about what we think makes a person, and life, worthwhile.
Is a life with suffering worth living? Should you give birth to a child knowing you give birth only for them to die? These are the questions pushed to the forefront for parents in situations like ours. Because of medical advancements, our daughter had a good and fighting chance and we would take it, but we also knew we could lose her in the end.
Other parents we know have been in situations where there was no earthly hope, and they had the sorrow of saying goodbye shortly after birth. Others have seen medical advancement pushed to the limit and have had to make the heartbreaking decision to turn off life-support. Several friends had their delivery induced when their lives (and by extension, their babies’ lives) were severely threatened if the pregnancy continued and also had the sorrow of losing beloved babies. All of these choices were made within a pro-life framework, but some of the choices were complicated as well as heartbreaking.
Medical advancements are a great blessing, but sometimes they also bring up new complex ethical questions. For example, parents and doctors caring for micro-preemies often face extremely difficult decisions as medical advancements continue.
Medical interventions can arguably be used unethically, keeping an infant, child, or adult lingering for too long at death’s door. On the other hand, a utilitarian viewpoint that views abortion as a good solution for infants like our daughter misses the fact that all mothers give birth to children destined for death. All of our children will face suffering and death at some point. I’ve seen some advocate for abortion as a kinder option than allowing babies to be born only to go through the discomfort of death. Yet abortion merely brings death sooner; it cannot provide an escape from death, pain, or grief.
Kalanithi and his wife decided to have a baby despite his terminal cancer and knowing that this decision would heighten the pain of death. He concluded, “After so many years of living with death, I’d come to understand that the easiest death wasn’t necessarily the best.”
Our daughter was born beautiful with jet black hair and eyes that seemed to look into your soul. We spent our days in the hospital with her head nestled on our chest, and her small legs wrapped around our sides as she slept. We fought for her life for two months in the NICU, and then when what should have been a minor medical procedure went wrong, we lost her. Those short two months with her were some of the most poignantly beautiful of my life. Her death was not necessarily the easiest death, but by choosing to fight for her life we gained precious time with her as a family that we wouldn’t trade for the world.
Kalanithi’s wife, in the prologue of his book, shares, “Although these last few years have been wrenching and difficult—something almost impossible—they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude and love.”
My husband, myself, and my daughter walked that same path and learned to hold onto life and love in a unique way when there were no guarantees about tomorrow. Life is a beautiful gift worth fighting for, even when that looks like giving birth only to hold your beloved child as they draw their first, and then their last breaths.
On a topic where words are weighted, and emotions are heightened, I share our story not to condemn others but to reach parents currently in the same situation, hearing so many confusing voices about what the best choice is. To you, I share our story so you can understand that we never regretted saying no to abortion and fighting for life.
Yes, death loomed over the rest of my pregnancy and life of my daughter, just as it looms over all of us on this earth, but love did too. The intimacy of giving birth was matched only in the intimate, although anguished, love of holding an infant passing from this life. Love, we discovered, can be found even in the worst of circumstances, and love is what made our daughter’s life beautiful.
Kimi Harris is a writer, mother, and wife of a pastor. She and her husband serve in the Midwest. She also writes at KimiHarris.com.