“Is she in pain?” I asked quietly as the pearlescent baby-shaped image on the screen folded its legs and then extended them.
The radiologist doing my ultrasound had just finished pointing out a cluster of alarming abnormalities in our developing daughter, using a slew of medical terms my husband and I, both medical students, were grimly familiar with. Pleural effusion: fluid surrounding one of her lungs, preventing it from expanding and developing properly. Ascites: excess fluid inside the abdomen, surrounding her organs. Cystic hygroma: a large, fluid-filled mass on her neck, strongly associated with chromosomal abnormalities.
Something was very wrong with our baby.
A few hours later, I lay on a hospital exam table. Arms folded over my head, I tried to stay still as a specialist in maternal/fetal medicine used a large needle to pierce my abdominal wall and then my uterus in order to take a sample of the placenta for genetic testing. After an agonizing two weeks, the results came back: our daughter had trisomy 18. My husband and I immediately understood the gravity of this diagnosis — it is one of those rare conditions we expected to encounter on a medical board exam, not in real life.
Trisomy 18 is rare, occurring in about 1 in 2,500 pregnancies. The cells of these babies have three copies of chromosome 18 instead of the usual two. There is no cure. Most babies with trisomy 18 die before they are born. The majority of those who make it to term die within five to 15 days, usually due to severe heart and lung defects. The few who live past one year have serious health problems, such as a toddler lacking abdominal wall muscles, revealing the slithering movement of intestines beneath his skin, or a 1-year-old who cannot not defecate on her own, requiring anal sphincter dilation multiple times each day.
In rare cases, babies with trisomy 18 are mosaic, meaning only some cells possess the harmful extra chromosome, which makes the disease less severe. Our daughter was not mosaic.
As parents, we felt it was our duty to protect our daughter from the inevitable suffering she would meet if she were to make it to term. And so, at 15 weeks of gestation, we made the painful decision to end our very wanted pregnancy.
As the date approached, I wore bulky clothing in an effort to hide my protruding belly — I was terrified someone would congratulate me on my pregnancy. Each day, I hoped that our daughter had not developed sufficient neural connections to begin sensing that her organs were failing. Using our home Doppler monitor, a Christmas gift from my sister, we listened to her heartbeat. Two days later, I tried to hear her heartbeat again, but it was no longer there. She had already died.
When I woke up from the dilation and evacuation procedure, during which her remains were removed from my body, I cried. I had never felt such profound emptiness.
My husband and I were given a small box sealed with a bow. It contained a tiny baby’s hat and a thick piece of paper marked with purple footprints the size of my thumbnail. Her footprints.
We had her remains cremated and placed her ashes in a tiny white urn small enough to fit in the palm of my hand. It felt good to have her home, even if it wasn’t in the way we had expected.
For such a heartbreaking event, we had the best-case scenario. My husband and I are medically literate. Our medical costs were fully covered by my insurance. I received care at one of the best hospitals in the country. We received superior counseling from multiple physicians and a genetics counselor, who helped inform us and support us without dictating or judging our decision. The day of my surgery, I was treated like any other surgical patient.
Other families aren’t as lucky as mine. A few months after my loss, my friend Jamie ended her pregnancy due to trisomy 18. I was horrified and saddened by her description of her experience.
As a Missouri resident, Jamie’s insurance did not cover pregnancy termination in the case of severe fetal impairment. Because their local hospital was charging them $8,000 for the procedure, Jamie and her husband, cash poor from a recent home purchase, opted to drive to an abortion clinic. Protesters shouted at them as they entered the clinic: “Why would you want to hurt daddy’s little girl? That’s daddy’s little girl you’re killing!”
Once inside the facility, Jamie had an ultrasound to confirm the cost of the procedure, which would be based on the baby’s gestational age. She and her husband were informed that the procedure would cost an extra $100 — boosting the cost to $800 — because the center’s clinicians disagreed with the gestational age that Jamie and her husband had reported. The clinic asserted that the baby was a bit older, making the procedure more costly. Jamie and her husband found themselves in the twisted position of having to haggle the cost of their own nightmare.
Eventually, Jamie underwent the procedure. Feet in stirrups, she received a “comfort shot” — an extra $60 — which I later learned meant an injection of fentanyl, a powerful narcotic. She was vaguely awake throughout the procedure and has spent the months since actively suppressing the dim, distressing memories of the termination.
After it was over, Jamie and her husband were not able to obtain the remains of their baby, nor were the remains sent for genetic analysis to determine whether their child’s form of trisomy 18 was heritable or not, as my husband and I had learned from genetic analysis. The center did not send a pathology report to Jamie’s obstetrician until many weeks later, and only after she phoned the center multiple times.
According to the Guttmacher Institute, 26 states prohibit abortion coverage in Affordable Care Act marketplace plans, and 11 states extend these restrictions to private insurance companies, effectively eviscerating Roe v. Wade. Only one of these states (Utah) makes an exception in the case of severe fetal impairment. In these states, only the wealthiest have access to pregnancy termination.
These restrictions have increased over the last decade. Before 2010, most private health insurance plans covered abortion, but that rapidly changed under the Affordable Care Act, which lets states prohibit private insurance plans from offering comprehensive plans that cover abortion. In today’s political and judicial climate, I fear this trend will only accelerate.
I don’t understand why we are so keen to make women carry to term babies with severe impairments. These include babies whose brains are missing (anencephaly) or whose lungs aren’t developed enough to sustain life (Potter syndrome). These are deadly diagnoses. What is being accomplished by forcing women to carry these babies to term other than ensuring that these children are as aware of and sensitive to their pain as possible?
We could not protect our daughter from trisomy 18, but we could shield her from any pain or agony that would come with it. All parents should be able to protect their unborn children in this way — to spare them from having to feel pain. These are horrific decisions that no parent should ever have to make.
But when they do, we — as health professionals and as a community — should be there to support them emotionally and financially. Even if you believe you would not choose to end a pregnancy under these circumstances (although I encourage you to remain humble when it comes to anticipating what you might do in an extreme situation), these should be choices that families are able to make.
Allison Chang, Ph.D., is a fourth-year medical student at Harvard Medical School.