Termination For Medical Reasons Future Survival Guide
This is a piece about termination for medical reasons (TFMR).
This is a heartbreaking decision that many families go through, but it is even LESS discussed than infertility and loss in public, let alone in the Jewish community.
The very word “termination” brings up a host of strong and sometimes painful associations with abortion. Last week, I shared the personal story of someone in this community who opted (with rabbinic guidance) to end her pregnancy, because of her mental health limitations.
But TMFR is something completely different. These are pregnancies that are wanted. These are children who are often planned and their families have already been dreaming about the place this baby will have in their lives. Some even go out and purchase baby items, furniture, and clothing.
And then their world shatters.
They go in for a routine appointment and find out their baby has a genetic or terminal condition. And they make gut-wrenching decisions that often haunt them for the rest of their lives.
This is one woman’s tale.
“I’ve debated for a while if I should share our story or not, as my husband and I are not the type to share an intimate part of our lives. I saw a meme floating around the internet that said, ‘One day you will tell your story of how you’ve overcome what you’re going through now, and it will become part of someone else’s survival guide.’ This message written on the sidewalk was another push for me to share our story in the hopes it would be someone else’s ‘survival guide’ as I did not know anyone personally who went through what I went through. Nor would I wish this on anyone.
I had a miscarriage towards the end of 2019 and then a termination in April 2020.
2020 was not easy for most people due to Covid, but I would truly like to erase it from my memory.
(Thank G-d, I got pregnant again,) I went for my 8-week checkup. In pre-Covid times, my husband and I would hear the heartbeat together for the first time. But due to Covid restrictions, I had to go by myself.
When I got called in, I remember asking Dr. M if I could call my husband so that he could hear the heartbeat. She said no, and the appointment went on. Deep down I was so sad he couldn’t be there to be a part of it. It was the first time the consequences of Covid made me feel isolated and alone. All went well at this appointment, and I went home to share the ultrasound pictures I got.
Mid-May came, and I went to the hospital for my 12-week checkup. I remember again being so nervous with everything going on. I wore an N95 mask and gloves to the hospital and brought hand sanitizer, sitting in another waiting room with more signs telling you where you can and can’t sit.
I texted my husband about how nervous I was. Being here alone again didn’t help.
I was taken to the room, and the technician did her work with a straight face. The appointment finished, and as I was cleaning up, I told her I was nervous with everything going on with Covid.
She called Dr. G, who confirmed that everything looked good and to not stress as she had seen mothers who had Covid. I left with my pictures and came home to show my husband. I was relieved that everything went well, yet sad he couldn’t be there with me. Going to these appointments alone was starting to wear on me, but I felt grateful everything was okay.
My husband and I agreed to wait until after 16 weeks to share with our friends and family that we're expecting again.
Mid-June came, and it was time for my 16 week appointment. I remember the night before so clearly... I remember laying in bed and telling my husband how nervous I was for the appointment (I'm the anxious/nervous type) and how I hope everything should go well. He said, "Don't worry, have faith in Hashem (G-d) and everything will be fine."
The next day came, and I went to the hospital feeling very anxious. I remember looking for any sign of whether everything was okay or not. She kept a straight face and said she would like to have the doctor come in and look at something. I felt something wasn’t right. The technician left the room and I texted my husband to keep him in the loop. My heart was racing like crazy. A few weeks after this appointment, I found a picture on my phone that I took without realizing. I had tears coming down my face. I was alone again and felt nervous and scared.
The technician came back, sat at her desk, and started eating an apple as if nothing was wrong. Every minute I was laying on the table waiting for the doctor felt like an eternity. “Dr. F” came in, checked a few things, told me to clean up, and come to his office. I remember shaking from feeling so alone at that very moment; I so badly wished my husband was with me.
I got to the doctor's office, and he explained to me that the baby had two issues: one with its brain and one with its abdomen. He said he's never seen both at the same time like this. I sat there with my mask feeling so hot and shaking, just wishing I wasn't alone.
I didn't cry. I was clutching my jacket, feeling numb. I was in shock. My brain was trying to process everything I was hearing and trying to ask questions at the same time. It was so difficult to focus because of the shock. My worst fears from the night before had come true.
Something was wrong.
He told me he was more concerned with the brain and how it was measuring smaller than it should be. I asked him to write down everything as I knew I would forget. I just wasn't able to process what was going on. He recommended that I go for an amniocentesis the following day and a fetal MRI in a week.
I left and called my husband from the parking lot with the news. Nothing seemed real at that moment. He asked me if I was okay driving. Deep down I wasn't okay. I was a mess.
I went for my amnio the next day and was a nervous mess from Covid, the news, and having this test done. Being alone again did not help. I was in a room with two frum (religious) women who were very nice and reassured me that the test was going to be okay. I hated being alone during this procedure and wished I had my husband to hold my hand for comfort.
I tried so hard to stay perfectly still and be calm. I remember seeing the picture of the baby on the big screen in front of me as they did everything. I was thinking how perfect the baby looked and wondered how anything could be wrong? But things were wrong and not going in the right direction. The amnio ended, and I spoke with “Dr. G” about what my options would be if things didn't turn out wellWe spoke for a while and she handed me her card. This was a blessing in disguise, as I’d find out later.
At the end of June I went for my fetal MRI with one of the top doctors who specialized in pediatrics. This time my husband drove me as I was even more anxious than all the other visits. I had to go in alone, and my husband waited for me in the car. I remember they told me to stay perfectly still so they could get a good image of the baby's brain. Throughout this process, they told me to hold my breath and breathe, and breathe, hold my breath, and breathe, etc. Each time my brain wandered with so many thoughts. Then I felt the baby kick, and I prayed they would get a good image.
After the MRI, they went into another room for further testing on the baby's heart. I was so drained from the long MRI that I just didn't want to do another test. This time it was a regular ultrasound focusing on the heart. At this point, the baby wasn't cooperating, and they gave me some juice and granola to make the baby move from its one spot.
When the test was finished, the Fetal MRI doctor came in to check himself on a few things. I was laying on my side, and the screen was in front of me, with the doctor looking at his own screen. I looked at the baby, and the last thing I saw was its little hand “waving.”
I had tears rolling down my face. I still get very emotional just thinking of this image; it's ingrained in my mind as the last image I saw. I prayed whatever was to come, that we would get a definitive answer on what to do instead of something we need to decide on.
The doctor said to meet him in a room. I begged for my husband at this point to be with me, as I was told when I got there that he wasn't allowed in.
Thank G-d, the doctor said yes.
He told us that the brain was measuring below normal and that its survival and outcome would not be good.
At this point, my heart was rapidly beating.
I had no tears.
Again, more numbness with my husband holding my hand this time.
He advised us to terminate the pregnancy.
Deep down, I somehow knew but I was trying to stay as positive as possible in the hopes the MRI was different than the sonogram at 16 weeks.
Everything stood still.
I was utterly devastated and heartbroken but somehow thankful for the definitive answer.
We thanked the doctor and left. “Dr. F” from the hospital (who recommended I go for the MRI) called me in the car on our way home. He said he was sorry and that he agreed about terminating this pregnancy, but it was up to us to decide.
We drove home in silence. I felt exhausted emotionally and physically. Two days later was our 10-year anniversary, and I stayed in bed miserable and crying over everything going on. There was nothing to celebrate…
I spoke with my gynecologist, who also said she was sorry. She said everything was up to us but also advised that we terminate the pregnancy based on the MRI results. I asked about the steps for termination, but she wouldn't give me details. She only told me that the secretary would give me a list of abortion clinics.
I kept asking for details as I wanted to know what the steps were, but she dodged the question and brushed me off. The secretary called with a list of clinics for me to call and to set up an appointment. It wasn't real… I had to set up an appointment to terminate a pregnancy that we wanted. Where was the middleman to deal with this? I had to rush to get this done because I was in my second trimester.
I remember calling the clinic on a Friday and asked if my husband could come with me. The secretary said no due to Covid. I asked for the details on what the steps would be. The lady was nasty. I hung up the phone and SCREAMED and CRIED like I never cried before.
How could I do this on my own?! I did everything else on my own, and for this major procedure, I couldn't have my husband with me?! I lost it. At that very moment, I felt for all the Covid patients in the hospital without anyone by their side. Everything was a mess, and nothing seemed real. I cried and cried. I didn't know how to do this on my own. No one told me what the procedure entailed. I remember “Dr. G,” who did my amnio in the hospital, giving me her card, and I called her out of desperation for some guidance. She picked up the phone. Thank G-d she did! I told her everything that happened, and she gave me contact info for “Dr. F,” who does these procedures in a different hospital. “Dr. G” was my only miracle. She spoke to me like a human and did not brush me off. She answered my questions and was so caring. I thanked her profusely.
I cried some more as I was an emotional mess from hormones, stress, and the unknown. Shabbat was getting closer and closer and I called “Dr. F”. We spoke briefly and I set up an appointment for the following week. There was no time to “shop around” for someone else.
Again because of Covid restrictions, I went to my appointment with “Dr F” alone. She spoke to me with my husband on speakerphone and describe what the next steps would be for the next few days. She asked me if I wanted to proceed. I didn't want to. I was a mess but knew it had to get done. I took a pill to start the process and the next day had to go to the hospital for another procedure.
The following day I had an x-ray, blood work, and a Covid test to prepare for surgery. The night before surgery, I felt the baby kick and move. I also had cramping from everything that was done. I prayed so hard that I was doing the right thing and that everything would go well in surgery.
I had surgery the following day, which was the first week in July.
Surgery was an emotional and physical roller coaster.
Right before surgery, Dr. F asked what we would like to do with the baby's remains. Totally caught off guard, my husband called the rabbi and asked, as we had no idea what to do. The rabbi said we should bury the baby based on how far along we were.
At this point of recovery, we both cried.
It felt even more real.
Paperwork had to be filled out, and phone calls had to be made. What should have been an easy process after everything we went through was nothing like that at all. We were told by the funeral home that Dr. F never signed the paperwork and left for the July 4th weekend.
It took over a week to get everything resolved to have a burial.
My husband, the funeral director, and the rabbi met at the cemetery with masks and read Tehillim (Psalms).
My milk came in over the following day or two. I was so engorged and in pain. I was shocked this was all happening. I called the lactation consultant I used in the past, and she helped me so much. She was sorry for what I was going through and told me if I needed someone to call her. She was everything to me in a time I was so lost and in pain. She called me a few times to check on me to see how I was doing. I thank G-d for her.
No one knew what I went through besides our parents and a rebbetzin who has been absolutely amazing. She was there when I needed her and talked me through a lot of feelings on multiple occasions. I was in bed for days and didn't want to speak to anyone, but she was so supportive and helpful. Life went on very slowly; there were good days and bad days where I would just cry. I finally spoke to a few people and shared my story with them, hoping it would give me some relief. It helped a little, but I was still processing everything I went through, alone, both physically and emotionally. People asked how I was. I lied. While it didn't feel right, I had no idea what to say at the time.
Thanksgiving would have been our due date... it's been really hard seeing people who were due around the same time I was. I've heard people say this before, but obviously, no one can really understand what a person went through and will never know, as everyone deals with it differently and in their own way. But until you go through something like this, you won't fully understand the impact of seeing other women have a baby around the same time you would have.
My hope in sharing our story is to support other women who have to deal with this and to break the stigma of talking about termination for medical reasons (TFMR). For many people, it is a very touchy subject for personal, political, and religious reasons. I feel that as people have been opening up about infertility, so too should women be able to talk safely and openly about TFMR.
I don't know anyone who has experienced a similar trauma like this, and I hope this story will help other women feel less alone, like I did and still do. I'll end with a quote I saw that resonated with me about going through this during Covid that said, 'We're all in the same storm, but we are not in the same boat. Some of us are in canoes, and some are drowning. Just be kind and help whoever you can.'"