One of the hardest parts of being a doctor is delivering bad news. As an OB-GYN, this usually means telling a mother that her unborn baby probably won’t make it.
“Incompatible with life.” “Severe fetal abnormality.” “Adverse prenatal diagnosis.” These are all terms used by the medical community that you’ve undoubtedly heard. In many of these cases, the mother chooses abortion, sometimes at the urging of her physician. Other women, despite the odds and the unimaginable heartbreak they face, choose to carry the baby to term.
It is in these cases that I’ve found some of my greatest joys as a physician — the opportunity to use my gifts and skills to accompany one of my patients in her maternal journey, along with her family, and to do everything I can to save the life of my other patient. In one such case that joy (and patient) has stayed with me.
A grim diagnosis
I first met her in 2013 through the shadowy screen of an ultrasound when she was just 12 weeks old. She was a tiny grey body with a flashing heartbeat and an ominous physical finding this early in pregnancy — cystic hygroma. When found in the first trimester, this often indicates a diagnosis of Down Syndrome and/or a significant congenital heart defect.
Over the next few weeks, she received an even more dire diagnosis: hydrops fetalis. Hydrops fetalis means there was too much fluid building up in her body cavities, indicating heart failure. That little girl’s prognosis was grim: With the combined diagnoses, we were told, she had a less than 5% chance of living to birth and a 0% chance of survival after birth. Her mother, my patient, made the only decision she could, to continue her pregnancy and give her daughter every chance at life possible, despite the suggestion by a high-risk specialist that she terminate.
Abortion took away my choice: I was pressured to abort my children. For my first baby, I gave in.
What happened next can only be described as a medical miracle. At a routine check-up at 24 weeks, I walked into a back room to speak with the sonographer reviewing the baby’s latest ultrasound images. I took her silence for doom. “Did she die?” I asked.
In fact, the hydrops was gone. We were stunned and stared blankly at each other, and then at the screen, where Grace’s tiny body remained curled inside a sea of black, the evidence that her little heart was failing now completely gone.
When I walked into her mother’s exam room, she could tell by my face that something was different. After I explained to her the baby’s miraculous turnaround, she asked what this meant.
‘It means you are going back to the high-risk specialist, is what it means,’ I replied, grinning.
The mother, who had just finished knitting a blanket and a bonnet to bury her daughter in, didn’t know how to process this news.
Statistics aren’t a death sentence
The reality is that none of us are really equipped to process the possibility of a fatal diagnosis (especially when it involves our child), nor how to process what can only be called a medical miracle. But as an OB-GYN who has personally cared for countless women dealt the most difficult of diagnoses for their unborn children, I can say that we never have absolute certainty about the outcomes of these diagnoses. All we have are statistics.
A 4-D ultrasound of a fetus tracking the stimulus during the research. (Photo: Kirsty Dunn and Vincent Reid, Lancaster University)
They are statistics slapped onto the fate of the tiniest of patients, who, despite their frailty and size are just as deserving of the best medical care we can offer. Neither their birth status, size, nor their disability should preclude their opportunity to defy the odds and join the ranks of the countless medical miracles that keep the profession on its feet, always chasing answers and in search of the very best care.
Don’t deal in caricatures: I was in the pro-life movement. But then, widowed with 6 kids, I prepared for an abortion.
In my experience, giving unborn babies with life-limiting diagnoses the best care instead of a death sentence has led to better maternal mental health outcomes.
I saw this repeatedly during my three years as an OB-GYN in Kenya, where I found such diagnoses were more common, but abortion less so. When the mother made the decision to carry a baby with a life-limiting diagnosis to term, the conversation shifted to the humanity of both mother and child and how they could spend this special time together and how her network could help her carry her impending grief. Instead of being an exchange of doomsday statistics, the relationship became about accompanying the mother and helping her to do the best that she could for her child.
Joy of life
That baby girl is now eight years old and the joy of her family and the delight of all who know her. While it’s true that many children will die from their conditions, her spunky smile joins those of countless other children who, like her, defied the statistical straightjacket they were born into. Their faces fill the news reports of flabbergasted parents and doctors who decided to give their child the chance to defy the odds, only to find the diagnosis to be wrong or not as severe as anticipated.
Just as we know for sure that we never know for sure, we know that about 9% of adverse fetal diagnoses on ultrasounds turn out to be wrong, and that is only among the babies who are given the opportunity to continue living. In some cases, depending on the method, false positives for fetal abnormalities are as high as 50%.
Those are stunningly high margins of error given the stakes and they beg the question, how much more often are we wrong, and what more is there for us to discover in the rapidly developing area of fetal medicine that might save even more lives?
My patient named her daughter Grace, and I am humbled to have been chosen to be Grace’s godmother.
She is a tangible reminder of my solemn pledge as a physician to honor, in the words of the Hippocratic Oath, my “special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.” And she is a living testament to both medicine’s limits and to its boundlessness and our collective duty to go beyond artificial human expiration dates in search of truly progressive health care that affords opportunity to all people, regardless of their physical limitations.
Dr. Christina Francis is the board chair of the American Association of Pro-Life Obstetricians and Gynecologists. Francis received her patient’s permission before sharing her story.
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