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Edward’s Syndrome – The Story of Zoe Jane

trisomy 18 edwards syndrome tfmr

We interrupted my pregnancy of Zoe Jane who had Trisomy 18 (T18) or Edward’s syndrome.

This is technically a late-term abortion. We even had to go out of state to do it, but I don’t have any regrets and I’ll write the whole story for you.

I’ve learned to not be so judgmental going through this loss.

I believe abortion is not a political issue, but one between a woman and her doctor and husband or significant other.

Beyond all that, I hope that you are never in the position to even think about this situation.

Also, I’ll say that I didn’t even know or think I would make this decision until I was put in this situation.

I hope you read my whole story

Our path to parenthood has not been easy.

Once I got put on thyroid medication I got pregnant on the 2nd cycle. I had some spotting and went in at 6 weeks and there was a little grain of rice with a flicker of a heartbeat.

We went to the 8-week appointment on December 24th, 2017 and there was no longer a heartbeat. I was sad, but I dealt okay with it, I know several women who had a miscarriage in their first pregnancy and went on to have healthy pregnancies and children.

A few cycles later and I found myself pregnant again. I was more hopeful this time around., however, spotting started at 6 weeks and I went in to again see a little embryo with a heartbeat.

This time a sub-chorionic hemorrhage (a small collection of blood between the placenta and the uterine wall) was also found. So, at least there was a reason for the spotting.

Two weeks later at the 8-week appointment, there was no heartbeat again.

This 2nd miscarriage was rough on me. It took me months to heal emotionally. I started meditating to help me get back to a positive me.

My third pregnancy was a bundle of nerves. Spotting started at what I thought was 7 weeks. I had been tracking using ovulation predictor kits (OPKs), so I was pretty sure of the dates.

An ultrasound showed a little grain of rice again with a flickering of a heartbeat. Measuring a week behind, but they didn’t see any problem with that.

I pushed my worry about the dates away. I went in at 8 weeks and there was still a heartbeat. Our little baby was growing big and had a healthy heartbeat. 

Around 11 weeks I was able to hear the heartbeat at home on a doppler. I bought the doppler to calm my nerves. I loved hearing the train sound of our baby’s heartbeat.

The 12 week and 16 week appointment were full of nerves, but everything sounded okay.

I started really being able to feel Zoe Jane move at 20 weeks. I didn’t think anything of this since this was my 1st pregnancy to make it this far. At 20 weeks 2 days we had our anatomy scan (January 4th, 2019).

trisomy 18 edwards syndrome tfmr

I had pretty much gotten over all my fears, at this point, of there being something wrong, because I prayed every night for a healthy, viable baby, and there was a baby with a strong heartbeat.  

The ultrasound tech didn’t seem concerned during the scan and we looked away for a bit, since, at the time, we didn’t want to know gender.

We met with the doctor afterwards, where we were told there were some things that showed up that they were worried about.

The baby had bilateral choroid plexus cysts, micrognathia (small jaw), left clubbed hand, and slight strawberry shaped skull.

She let us know that it was likely a trisomy, probably 13 or 18.

I decided that our baby was uncooperative that day and it was all nothing. Of course, I cried after leaving the appointment and I started doing research to be prepared. 

We got an appointment set up for the maternal fetal medicine (high risk OB) for the next Tuesday. I was 20 weeks 6days at that appointment on January 8th.

We had an hour-long ultrasound, where the doctor came into the ultrasound room to tell us what was all wrong.

By this time, I knew it was most likely T18, but was still holding onto hope. We also decided at this point to find out gender since there was most likely something wrong.

We found out at this appointment that our baby girl had all the things previously seen, but she had bilateral clubbed hands plus a congenital heart defect (specifically ventricular septal defect with overriding aorta).

We debated having an amniocentesis done then or just non-invasive prenatal testing (NIPT).

The doctor asked if termination was an option, I said no, because at this point I didn’t think it was. We did the NIPT.

The results came back on January 17th as positive for high risk of Trisomy 18. We opted for the amniocentesis the same day, because we wanted to make sure what form our daughter had, as mosaic or partial have less symptoms and better outcomes.

At the amnio appointment I asked the doctor about our options including termination. The doctor explained that Trisomy 18 is incompatible with life.

If I continued the pregnancy, Zoe Jane would likely die in utero.

If she made it to full-term they would arrange palliative care with prenatal hospice, but typically labor is too hard on their bodies and they pass during childbirth.

If I opted for a c-section, our baby girl might live for a couple of hours. A COUPLE OF HOURS! Not days, weeks, months, or years, but hours, minutes, seconds, or not at all.

If we opted for termination we had 2 choices: a D&E (which I was against) or labor and delivery by induction.

The doctor sat there with tears in her eyes and said “I’m giving you 2 shitty options,” which was true because neither were what we envisioned for our baby.

The amnio confirmed what the doctors expected, that it was full trisomy 18. 

Ultimately, we chose to interrupt the pregnancy by induction.

trisomy 18 edwards syndrome tfmr

I don’t think I would have been able to handle it all mentally to carry to term.

Each day would bring worry that she passed in utero that day. If I didn’t feel her move as much, etc.

I would have felt like I was waiting for my womb to turn into a tomb, yet again.

I wouldn’t have been able to get a nursery ready, as she would never use it.

Strangers would have asked me as I got bigger if it was our first, are we excited, do we have the nursery ready, etc.

All these things would have taken a toll on my mental health, relationships, my life.  

I did enough research, and with my background of being a biological scientist, I knew that I would be watching my daughter suffocate to death. It may look peaceful, but I would know it for what it was. And that’s just if there was only the heart defect.

Esophageal atresia is also common in T18 babies, where the esophagus doesn’t connect to the stomach, so the babies starve to death.

Additionally, 50% of babies born living with T18 can’t hear.

There is also a risk to the mother, as the placenta is made up of the cells with the extra chromosome. The risks of pre-eclampsia and excessive hemorrhage were risks to me carrying Zoe Jane to term.

Thinking of our future family, we could start our journey of grieving and healing sooner.

I’m young and age is something I have to worry about while trying to have a family.

I don’t judge mothers that made the decision to carry longer, but I couldn’t handle that. The choice to induce didn’t change the outcome- Zoe Jane was marked for heaven the day God let her have Trisomy 18. 

We had to go to the University of Minnesota for induction, as we were too late to do anything in Iowa.

By the time we found out something was wrong, it was too late to interrupt the pregnancy in Iowa.

Even in the hotel the night before, I went over the reasons it was the right decision again. I still wasn’t sure I could go through with it. 

Ultimately, we (I) chose to suffer, so Zoe Jane never had to.

She was 23 weeks 2 days gestation when she was stillborn on January 25th, 2019.

Cathi Clark

Guest Author: Cathi Clark

I’m a 34 year old biochemist and molecular biologist. I’ve been struggling with recurrent pregnancy loss as well as a termination for medical reasons. I hope to inspire others to keep moving forward to find the light after the darkness.

Read Cathi’s full journey at her blog:

Read April’s full story by clicking above.

Read stories of terminations for medical reasons by clicking above.

Share your story by clicking above.

Add your angel to the remembrance page by clicking above.

trisomy 18 edwards syndrome tfmr