“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.
I am 18 weeks and they found my baby to have hydrops fetalis last week. I am going through the same thing. I wouldn’t wish my decisions on anyone concerning my very wanted unborn baby right now! I was told I could have major complications myself if I don’t terminate the pregnancy. As terrible as this situation is it helps to hear your story, that someone else has been through this! Thank you for your story and I’m so sorry for your loss!
My fiance and I are currently battling this very unfortunate situation. This article has given me more insight to the thought of termination although I don’t think that I could go through with that I see why someone would. I’m already 19 weeks so we found out a lot later than many others. I wouldn’t wish this on my worst enemy its devastating to say the least. To watch your baby in an ultrasound with excitement only to have doctors tell you that she may not make it is heart breaking. It’s a very hard choice to make and I can only hope that any family that has to face this is supported in whatever they choose to do.
Please take no comment or thought from this “David”. He is far from wise and has much to learn. He knows not what he is saying.
Allison,
Beautifully and thoughtfully written. I am sorry for your loss. So many can relate to your experience and that of your friend in MO. Thank you for reminding readers to be humble in an extreme, emotionally charged situation such as this one. It’s very important that people have compassion for one another, although our ultimate decisions might differ. I can see why some mother’s facing this situation, would be worried for the future of an extremely disabled child. On the other hand ” what if the doctor’s were wrong about this pregnancy, ” could haunt someone else for years to come. Affordability is a concern as well, as was noted in the case of the friend in MO. Access to health care, location, and level of income matter. Some people can afford to make plans for the long- term care of a child in this condition, but many others would not be able to sustain the many accomodations ( therapies, frequent doctor’s visits, medications, surgeries, possible 24 hr care etc) necessary to maintain the quality of life that a child would deserve. Adoption could be an option for some, but a medically fragile child is not easy to place. It’s a hard, gut wrenching choice that families must make. Thank you for sharing your story.
Dear Allison,
I am sorry for the loss of your daughter. Words are not adequate to express the sorrow that parents and their families experience in the death of a child. I am the mother of an eleven year old little boy diagnosed with Trisomy 18. He is the youngest of our children and has thrived despite overwhelming odds and medical challenges. Like you, my husband and I are both medically informed. We are both graduates of Harvard Medical School HMS’92 and HMS’ 83. I cried at my 26 week ultrasound when I saw his clenched fists, his cardiac anomalies and his precious profile with his thumb to his mouth. It is a picture that will always remain etched in my heart. I was referred to a maternal fetal medicine specialist and had an amniocentesis several weeks later. After an agonizing wait we received the news that our son had Edward’s Syndrome. My response was very different from yours. I prayed and bartered with God to have the opportunity to meet and care for our son. The prognosis was grim and our maternal fetal medicine physician offered to induce labor as we had five beautiful and accomplished children and she wanted to protect them. Juxtaposed to that were my raw emotions and belief that our son’s life, however short, has value. I could not come to explain how I would terminate the life of their brother because somehow in the world’s eyes, he was less of a human being because of Trisomy 18.My then seven year old kissed my growing baby bump on a daily basis and planned to teach his younger brother how to ride a bike, like his older brothers did for him. Allison, I have miscarried two children and know the pain that only a mother can feel with that loss. However, we were blessed. At 38 6/7 weeks the most beautiful cry filled the delivery room after our son was born. We prayed that his life would be filled with joy and made many medical decisions for him to have a meaningful life rather than a long life of suffering. Our son is now eleven years old. He had is Tetralogy of Fallot repaired at 19 months of age, and has had other medical procedures. However, he is able to use a communication device to ask to play with his favorite cars, truck, and airplanes, uses it for turn taking on board games like snakes and ladders and can ask silly knock knock jokes. He is able to use a gait trainer to round the bases in Miracle League baseball, learned to ride an adaptive trike at age 3, loves to have books read to him and answered third grade comprehension questions from Black Beauty and Charlotte’s Web. He has full Trisomy 18. Yes our son has epilepsy, chronic lung disease, cortical visual impairment, an anterior diaphragmatic defect and a heart that has been brilliantly repaired. More importantly, he has a life filled with joy. The logic of science says that Trisomy 18 is incompatible with life. However, this is not our experience. Our son has been downhill skilling, waterskiing, and surfing all through adaptive programs for children with disabilities. He has visited the London Zoo. Like you, I did not want my son to feel pain and to suffer, but I also did not want to cause suffering by inducing labor and terminating his life. Our son has had a life that is filled with meaning and purpose. He has taught us the meaning of unconditional love. We are blessed to parent all of our children and know the challenges and heartbreak of infant loss. There is so much more to learn about many birth defects and genetic disorders. As a mother and pediatrician, I want others to know that sometimes the logic of science is that we do not know how things will turn out and that the Great Physician has plans beyond our understanding.
Laura M. Elmer, MD HMS ‘92
I am glad your son survived to term, was able to be born, and has survived. In your haste to promote your ideology, you didn’t even bother to read the article… her child had already died. Was she to carry a dead and rotting fetus until her body managed to expel it or she died? You are a doctor, what miracle option was available to her?
In the future, if you decide to denigrate the choices of others, (and honestly, please seriously consider not intentionally searching out people to heartlessly ridicule), I would recommend you show some of the humility and compassion recommended by your “Great Physician.” Yes, she had decided to terminate her pregnancy (the only reason you are here) – but the heartbeat had already stopped before she reached that day. There was no “miracle” to be had. No eleven year old smiling and playing, but dead foreign tissue risking her future fertility and her very life life. I am glad you had the opportunity to carry your son to term and meet her. She never had that chance.
My daughter and son-in-law where first told the ultrasound showed a healthy baby. then bloodwork showed baby has Turner syndrome. Then placenta test showed trisomy 18 specialist told them that placenta test was 99.9% accurate when they asked for test to be repeated. Being in medical field they chose to repeat all the test and they had to pay for the test the second time. the repeated test showed no abnormalities. Had they chosen to terminate they would have done so to a beautiful healthy little girl. During the waiting time they chose no matter what the results to carry and love their angel for as long as they have her.
They know the heart ache of losing a child because they already went through 3 miscarriages in 2 years.
So even 99.9% accurate has a chance of being inaccurate. Praying for all no matter your decision.
I had a baby with Trisomy 18. She fought to live. They thought she would die immediately. She bravely accomplished five and a half weeks! I haven’t held her now for 17 days. We gave her a beautiful funeral. I’m glad I gave her that fighting chance. She smiled many times, looked at me with big blue eyes and I’m glad I left her alive to do so. We should give more hope and trust in these babies that just want to feel a human touch albeit short and brief. God bless anyone with a Trisomy baby. It is hard but they deserve our love and touch even for a brief moment or maybe many long, difficult moments. Who are we to say they wouldn’t give anything for such a chance? Give them a opportunity! I know it’s hard. But we just don’t know enough to say not to, medical reasoning included. And my heart goes out to those parents who have not done so in the past. I know you mean the best. Take courage for those expecting one. These are beautiful babies!!!
Good evening:
I’ve read the article I am ProChoice, I would like to give my humble opinion. The article stated that the baby was dead inside the womb, therefore it was in the best interest for the mother to have the procedure to extract the baby’s body. If you leave a dead body inside the womb of a woman it will lead to a slew of problems:
decomposition would bring infections for example.
If I was pregnant and the doctors tell me that the baby will live after birth I would carry it to term, but if the baby dies inside my womb I would have the procedure done.
Babies die for a variety of reasons, not all will live but the healthcare community should take care of women so that they can have a baby after a miscarriage, my partner’s son married and they lost the baby early in the pregnancy, after five years his wife got pregnant and gave birth to a very healthy baby boy who is now 8 months old.
Like many comments, my wife and I got pregnant with our third child. The genetic test came back Thursday with a 9/10 score for trisomy 18. We met with a geneticist and had an ultrasound. We are 11 weeks. The result read by a doctor- Two chamber heart, fluid on brain all the way down the spine to name a few. The baby girl named to be Samantha will die before birth. We have faith. We are also realistic. I can appreciate life as I am a paramedic. This has not been easy. She will go to heaven and be a healthy girl like many before her and after her. We are humans and need to appreciate life no matter the length.
Thank you, my daughter is going through this right now. She is 15 weeks and has had all of the testing and is waiting for a date to terminate. It is a horrific thing for the whole family. Your article is very comforting, thank you again and so sorry for your loss too.
Dear Darlene,
Please, please tell your daughter to reconsider what she is about to do!!!! We had a trisomy-18 little girl who was the joy of of lives. I would not have traded her for a “perfect” baby for the world!!! We loved her as much or more than our other children and she was loved by everyone that met her. Please ask your daughter to consider giving the baby up for adoption if she does not want to raise it. We would gladly take her child in a heartbeat and raise it, despite any deformities…so would hundreds of others! Many trisomy 18 children live and have happy lives. Please beg her to reconsider. Her child may be the greatest blessing she ever receives!
We are also going through this same nightmare, my daughter and her husband must make the same heartbreaking decision. Praying for strength and ability to move forward for our family and all families struggling through such a sad time.
My daughter is also going through this 😞 Very cruel and sad! So not fair..xx
I don’t want to start an argument, however, my point was that they are NOT informed. Most medical studies regarding Trisomy 18 were conducted in the early 1980’s. The most recent study is still being done. Going simply by what medical texts and the word of one or two pediatricians is not enough. Most doctors familiar with Trisomy 18 are those who have patients with the disorder, and are simply too busy to write extensive papers and studies on how it really isn’t “incompatible with life” as they were taught in med school. There is a plethora of information on the internet provided by parents and advocates for Trisomy disorders which don’t paint such a bleak picture. If the author of the article was familiar with any of that, she should have included that in her article to at least give some hope to parents facing such a frightening diagnosis some hope and encouragement to make a well informed choice. And I was careful not to use the word murder. But I refuse to deny the fact that where there was life before abortion, and no life after abortion, that child (or fetus, if you prefer) has been killed.
Did you fail to read the sentence where she sated that her baby’s heart had already stopped beating? Seems that way…
I may have been misunderstood. I understand that the author’s baby’s heart stopped beating, therefore she experienced a miscarriage, not an abortion. But she is advising people using old information, and no real life experience in dealing with a live birth of a baby with the possibility of a disability. When making a decision, one should hear both sides, and the author is only giving one.
Yeah because clearly many many children have survived and thrived with no health insurance and hearts that don’t beat. Doctors simply don’t have time to write about them. Ugh.
I am NOT the pro life Jennifer V here but am responding to her pro life inanity here. I should have been clearer as we have the same first name. I also had a miscarriage and a D and C from Trisomy 18 and I couldn’t be more in disagreement with her.
You have been poorly informed of Trisomy 18 and its complications. I have a 19-year-old with T18. She is healthy and thriving. She has had her share of medical issues, but is amazing in her ability to live joyfully and persevere. There are many, many stories of families with T18 kids that you left out of your narrative. I encourage you to visit http://www.trisomy.org at see what you missed. I am so sorry for the loss of your baby, nobody should have to go through that. However, I don’t believe aborting a baby with health issues is “protecting” him or her from anything. It is harming the child in the most basic level: killing him or her. Not to mention that many in-utero
Sorry, my tablet glitched and posted my response prematurely. I was going on to say that many in-utero tests are incorrect. There are many stories of babies being diagnosed as T18, when, at birth, they are perfectly healthy typical babies.
Just because it is not the decision you would have made doesn’t make it wrong. Do you know the odds of those tests being wrong? They are medical students, they are more informed than most. I am glad your choice worked out for you, but other people have to make the choices they do. Please don’t call people that disagree with you murderers.
She wasn’t aborting simply because of the future health defects the future baby would have. The heart of the fetus stopped. It was dead.
Abortion has been deemed legal by SCOTUS. That decision has been reaffirmed more than once. It is unlikely that decision will be overturned as the court is loath to reverse decisions made and reaffirmed by previous courts. Were they to start, it would set a dangerous precedent for future decisions. Also, if it were to be overturned, the GOP would have one less arrow in their quiver to fire at Democrats as a wedge issue dividing the country. They need that for their campaign planning. Did you know that abortion wasn’t even an issue for catholic and christian churches until the 1980s? Look up Jack Kemp, Randall Balmer, Jerry Falwell and Paul Weyrich, and how they manufactured abortion as a wedge issue.