“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.

advertisement

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.

Leave a Comment

Please enter your name.
Please enter a comment.

  • My youngest daughter was born with full trisomy 18 and no prenatal diagnosis. She did have heart issues, but lived six wonderful months. She was very comfortable and was not in pain and suffering. The day she turned six months old she very peacefully went home to Jesus while in my arms.
    Through Erin we learned the meaning of unconditional love. Erin made us better people. Because of Erin, my oldest daughter is one of the best NICU nurses there is.
    If you would like to meet her, please visit her website. Erinsvisit.com

  • Thank you for sharing your story and allowing your family to be vulnerable. We just went through this, our baby was diagnosed with Trisomy 18 and we chose to end the pregnancy. We are both devastated and heartbroken. The part in your story where you state you were trying to hide your pregnancy so no one would ask questions was particularly poignant for me, as I did the same. Again thank you for sharing and I am so incredibly sorry for your loss.

  • Very interesting comments here. The debate about abortion will soon be decided. Millennials are the most pro-life generation. There will soon be a third pro-life justice on the SCOTUS. Many states are passing heartbeat bills that prohibit killing unborn babies with a heartbeat, while some states like NY scramble to pass bills that guarantee abortion until birth.
    No woman has the right to choose to kill her unborn child, a separate human person, and those who would muddle the debate with “pontificating” about how men could never understand, and misplaced but well-meaning and kind empathy for this sad situation, can never alter the unalterable truth…abortion stops a beating human heart.

    • Mr. Meyers,
      So does war. Are you organizing and marching to end all wars? Until you are, your “pro-life” arguments fall on deaf ears.

    • An acorn is not a tree, an egg yolk is not a chicken, and a clump of cells is not a baby.

      That clump of cells is treated as a foreign object by the woman’s body. It doesn’t know what it is. Morning sickness vomiting is a symptom of her body trying to expel it. That clump of cells is not a viable entity on its own. It cannot survive on it’s own until at least 24 weeks out from conception. The time and date of conception cannot be 100% determined as conception does not happen in an instant, but rather it is an event that can take up to two weeks to complete.

      Abortion will never become illegal again. SCOTUS has ruled on the legality of the medical procedure more than once. The Court is generally loath to reverse the decisions of previous courts. And republicans will not allow it to become illegal again, because if it did, they would no longer have that arrow in their quiver, their last and most precious tool in their arsenal to lure right leaning voters to the dark side.

      Some time ago, the RNC decided to make abortion a wedge issue. They politicized it. They do not care about you. They do not care about the rest of us. They only care about power and money. The rest of us in the 99% are just peasants eating crumbs from the meals we serve to them.

      Look, if you don’t want an abortion, then don’t have one, but do not pry into the private medical and personal business of someone you don’t know. There are many valid reasons for having one, but those reasons are none of your business.

  • Although I am pro choice, terminating a pregnancy because a baby has birth defects is morally wrong. Disabled children have a right to live just as non disabled children do. If not for your ultrasound which showed the child was disabled you would not have terminated the pregnancy and the baby would have lived. With modern science, it may have lived months or maybe even years but now it is impossible to know now. Many children are born with terminal defects and their parents care for them and love them. Eugenics is a disproven medical field and must not be brought back.

    • It is curious that it is men who feel they have the truth about what it means to carry a profoundly damaged fetus to full-term. I’m sorry, but you have no idea what you two are pontificating about. Silence would be appropriate along with deep listening.

    • Did you not read the list of miserable conditions that the fetus would have born with? They are not garden variety disabilities it would have born with. And only to live perhaps a very short time, 15 days if any at all, in this realm with the harshest of disabilities. Why subject the fetus to horrific pain for months, only to have it live two weeks. You missed the most compelling detail. It had no heartbeat. It had already died.

      You wrote:
      “If not for your ultrasound which showed the child was disabled you would not have terminated the pregnancy and the baby would have lived. With modern science…”

      Ultrasound is modern science. Why discount it, followed immediately by promoting it?

      I find your comments to be callous, thoughtless, hurtful and uncalled for. Be anti-choice if that is your decision, if you and a woman do not want an abortion, don’t have one. SCOTUS has ruled that it is a legal medical procedure, and has reaffirmed its legality more than once. It’s not your place to be pontificating against someone else’s medical procedures.

    • Men will never have any idea at all what giving birth feels like until we pass a bowling ball through our sphincters.

  • You are such an incredible and courageous person for sharing your story, Allison. Your writing is so powerful. Thank you for allowing us to bear witness to the difficulty you and your husband endured and continue to manage. I hope that we all can learn from you and handle our own life challenges with such grace, fortitude, and love.

  • Thank you for expressing your thoughts in what was a difficult and heart-wrenching experience. This is must be therapeutic for you and I sincerely hope you recover quickly from your loss. Your beautiful article however was spoiled by the blatant advocacy for abortion on demand and mercy-killing in your last paragraphs, tainting your comments with political bias. Many people disagree with your choice and believe that every baby has a right to be born and not euphemistically phrased “terminated”; moreover, institutions have legal rights to not offer abortion. Perhaps what is most offensive is that this termination of a human life is portrayed as a kindness; this is matter is entirely debatable and may lead us down the slippery slope of euthanasia for born infants and children.

    • Dear M. Meyers,
      I never wanted (or, as in this case, needed) and abortion but I gave up long ago telling other people to live by my choices. You are responsible for living in accord with your values; I for mine. For instantce, does your religion tell you that birth control is wrong? If so, don’t use it. Mine doesn’t hold that position but does say that war is wrong and I will never serve in the military for that reason. Live your truth and leave others to live theirs without shaming them and you’ll know you live in a free country.

    • I read no advocacy for abortion on demand in the paragraph you refer to, or anywhere in this article. That medical professionals support patients who make this decision does not mean they made the decision. That many people disagree with the author’s choice does not mean most people disagree with it. Aamof, most are in favor of legal abortions.

      “Seventy-seven percent of respondents said abortion should either be generally available”
      https://www.cbsnews.com/news/poll-strong-support-for-abortion-rights/

      Other nonpartisan polls indicate support for legal abortions.

      One more fact you should be aware of: after an initial spike in the abortion rate after SCOTUS first ruled on its legality in 1973, the demand for this medical procedure that is no one’s business but the woman and her doctor has been continually dropping to the point it is below the 1973 demand rate.

      You wrote:
      ” Perhaps what is most offensive is that this termination of a human life is portrayed as a kindness; this is matter is entirely debatable and may lead us down the slippery slope of euthanasia for born infants and children.”

      In the author’s case, you would subject the fetus to months of pain, only to be born with horrendous defects and die two weeks later. That you would subject infliction of pain on it indicates to me that you (plural) are the cruel ones lacking compassion. In her case, the fetus mercifully died before having to endure that pain.

      As for your “slippery slope” remark, hyperbole much?

  • Thank you for sharing both your tragedy and that of your friend. These are such important stories to tell. Anyone who is reading this and has members of Congress who do not support a woman’s right to choose would do well to print this out and mail it to such legislators. In CT I don’t need to do this but in many, many states it would be appropriate and helpful. Blessings to you and your husband as you move forward with you education, your careers and your family.

    • I have read some wonderful comments. However, the point is made by those comments. Emotion is a powerful thing, but shouldn’t determine right from wrong. Killing is killing, and the end never justifies the means. These babies deserve a right to live and be loved if only for a brief period of time that will mean so much to their parents, who can hold them, kiss them and cherish them is even briefly.
      No one has mentioned the suffering in utero, pain, caused by abortion to the unborn baby. There is indeed documented suffering to the baby as he or she struggle to survive in utero.
      I am afraid that this issue is a “hard case” and is being used to justify abortion on demand politically.
      I recommend all go see the movie “Gosnell” and then discuss abortion.

  • Thank you for writing this. The continuation or termination of a pregnancy of a fetus is a horrible decision that no person should have to make. Too often the gravity and difficulty of this decision, especially in the case of a child that is deeply wanted and loved is completely ignored. The decision of what to do in these situations should not be legislated. They should be made by the parents and their health care professionals.

    I too had a baby with a trisomy 18 genetic defect. This was after losing my first child, an otherwise healthy baby girl who was born still-born at 40 weeks. Thankfully I didn’t have to make the decision of what to do in my second pregnancy, the fetus with trisomy 18 died in utero at 12 weeks. The defect was identified in the post-DNC pathology. I cannot imagine the mental anguish my husband and I would have gone through, after losing our first child if we had been required to go through the steps to terminate our pregnancy described in your article, or to carry the pregnancy to term, only to have our child die within the first days or weeks of life.

A roundup of STAT’s top stories of the day in science and medicine

Privacy Policy