“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.
Our daughter has Trisomy 18r. She will be 44 years old March 14. She didn’t have genetic testing until she was age 13. Her tests were done in Portland, Oregon. She is basically healthy with no heart or kidney issues. Imagine our shock when we got the tests results & learned most babies die in utero or shortly after birth.
First and foremost I would like to send out my condolences to all the parents who have lost their child to trisomy 18 or any other abnormality I am 34 years old and I am 13 weeks 3 days pregnant I have 4 living children that I love and care for so much and thank God for every day I have been wanting another child and I finally am pregnant I had the genetic testing done about 2 weeks ago and it came back that my baby may have trisomy 13 and 8 I really never did any research on trisomy and what it is and when I did it broke my heart I have been crying everyday because of the fact that I may lose my child I just had a CVS done where are they stuck a needle in my abdomen and also cut a piece of my placenta to further test it to get the most accurate results and I pray that my child do not have trisomy anything but I am also preparing myself to this is very sad upsetting and seeing that I’m not the only one who’s going through this it really does make me feel a little bit at ease that it’s ok to make that decision if it comes down to it for my child not to suffer this is so heartbreaking I’m in tears now while I’m writing this comment I’m constantly up at night I cannot sleep all I do is rub my belly and pray this is so hard for me for anyone I will definitely keep everybody posted once I get my results in the next two weeks my prayers definitely goes out to all the mothers and fathers who have lost their children to this disease or to anything having to make a decision like that is really hard and I pray for everyone strength who has to go through this blessing to you all
Go on the SOFT website (Support Organization for Trisomy). http://www.trisomy.org You will see many Trisomy 18 kids. There are some in their 20’s and 30’s. Please don’t be scared of kids like us. Can you make the decision to just love us every day of our life? It will be worth it.
Hi I’m one of these parents that just today 2/10/2020 has Received the results that are baby girl has t18 I have been crying I’m non stop I’m due on March 22 2020 . I have 3 kids this was going to be my 4 child my Hasben and I are heartbroken with all this. For hem this was going to be he’s first baby and he wished for a girl and know this is happening to us I have no words to explain
Allison,
What you wrote hit very close to home with me, as my husband (a dentist) and I (an ortho OR RN) had to also make the heart wrenching, horrible decision with a T18 baby. Like you, the baby had peacefully passed away by the day of surgery. Never in my life, did I ever think I would be praying to God, asking Him to please, please take my baby into His arms, away from this earth. I agree, stay humble-one will never think they will end up in a circumstance where they have to choose…and it’s a horrible choice to have to make. Hugs to you, and your husband. We have been there, and we understand!
Been there as a physician AND a husband/father. ALWAYS a TOUGH call for EVERYONE involved!!!
Allison,
I thank you for writing this article. I am 17 weeks pregnant and my husband and I have found out that our baby has Trisomy 13 and Alobar holoprosencephaly. We have made the decision to not continue on with the pregnancy, however we reside in Missouri like your friend and my doctor has referred us to an abortion clinic in Illinois. We want a private and personal hospital experience for this just like any other couple but it seems to do that we would have to carry our boy full term. I am wondering if it is possible if you could find out the name of the clinic your friend went to. I would like to make sure we don’t go there.
Thank you!
Hilary
Oh Hilary, I am so very sorry to hear this. I know this is probably too late, but the clinic in the article was Hope in Granite City. I was treated well and with respect for the majority of our day there – they actually provided us a separate waiting room at no extra charge (typically $200+) as they knew we were there for a medical termination. I don’t know if you’ll get the same level of treatment that Allison was able to regardless of where you go/have gone – you’ll have protesters following you no matter where. I do hope that everything is well with you.
Our daughter was born May 16, 2018 and she passed peacefully in my arms on May 22, 2018 from Hypoplastic Left Heart Syndrome a complication from Trisomy 18. We found out after our genetic blood work. We was so happy that we had finally gotten a girl we prayed for that the Trisomy diagnosis was like second thought. We was like what, what’s wrong with our baby girl ? We did the amino, and it was confirmed she did have Trisomy 18. She was so active, she couldnt have been sick I kept saying to my self. We traveled to MUSC in Charleston to see the lead cardiologist that was going to see if it was something they could do Greenville couldn’t. That drive was so long but only took us 2 1/2 hours seem like 12. She was going to be too small to operate so we decided to come and allow our time with her either inside of me or out but we wanted to be arounded by family. We told our 9 and 11 year old and they just hugged me so hard and said Lyric is going to be fine as they placed their hands over my belly. They had to decide to induce me at week 38 on my mom’s birthday as I requested and at 5:45 am she was here. She came in singing as her name Lyric was so fitting. We got her christening, she got memories made with their hand prints and her foot prints, we also got to do one. The doctors said other than the sound of that malfunctioning heart she was fine and we could take her home. With hospice on speed dial, we as able to sit and hold and kiss her for 6 days. It was an amazing experience and I pray that she didnt suffer nor hurt through any of the days that lead up to her passing. I kissed her for the last time as I was able to ride with her in my lap as I road in the hearse to the funeral home. She now rest in a music box where she can sing forever in out hearts.
We made the difficult decision 2 weeks ago to abort our pregnancy (22w6d). Due to the gestation I then had to go through an induction and birth. Our beautiful boy had the most severe of all the symptoms. Spina bifida, heart, brain and bladder defects, club feet, cysts. It was a shopping list! Our decision was based on our son’s best interests. IF he survived his life would be very short and painful. I just couldn’t do that to him.
We know we have done the right thing but the pain is still very teal and raw. I have been comforted to read finally (here) stories of families expecting a T18 baby that have chosen to terminate. It seems that people are ashamed of it and struggle with talking about it. Its not easy.
I just gave birth last Sept. 22, 2019 and thats just when my son was diagnosed of having Trisomy 18. It was so devastating. He had clabfoot,hernia,low birth weight, a mass on his waist, small mouth, small chest, unusual size of the head, unusual shape of the ears, his hands steady closed and difficulty from breathing and so he has been dependent to an oxygen supply. He had these lots of unusuals! It was crazy. And the doctors said that it looked like his heart was not in a good shape as well. I didnt felt anything unusual all throughout my pregnancy except for experiencing hypertension 2 weeks before giving birth. He lived only for 2 days. It was so painful see your newborn slowly fading as his vital signs all flattens. We had an option to get him revived but as doctors explained Trisomy 18 has no cure to date and so it will only prolong his agony being hooked to medical machines and all which made us decide not to choose it. Heaven gained another angel last Sept. 24, 2019 at 11:57PM. I feel for every mother who lost their precious one to this disease. I pray that we will all be healed and be consoled in knowing that losing them is sparing them from sufferings and that they are in a better place now with our creator.
Sorry to hear that! As today my unborn girl just 13 weeks into pregnancy was aborted and joined heaven. She was diagnosed with trisomy 18. I work in healthcare and see babies with devastating conditions. Some babies are lucky to only have a few issues where the bigger percentage lands in the range outlined by “not compatible with life” my heart goes out to you!!
Baby Doni, I am so very sorry for the loss of your son. I am sure it was very hard to go through. I am sad that you weren’t told that there are some children who have Trisomy 18 and are in their 20’s and 30’s. I hope that each day will bring you healing.