Trigger warning: this blog contains explicit and sensitive material about pregnancy loss.

Should we get pregnant?

It was a discussion whether to go off birth control. I can’t even say that we made a decision but, with time, we stopped preventing conception. Right away, and I see the blessing in that, we were pregnant. Seeing those two red lines all the doubt inside me dissipated. I was overjoyed. They would be exactly two years apart.  

Should we do the AFP test?

Ultrasounds? Definitely. Sugar test at 15 weeks because I developed gestational diabetes last pregnancy? Yes. Blood tests? Of course.  Alpha-fetoprotein screening (AFP)? Well, I had to think. It’s more than basic testing. It costs a little money. But it’s just a blood test. Ok, I guess I will do it.

And just two days later I got a call from my doctor. “Something is not right.” Don’t worry, I was told. It’s probably nothing. So I decided not to worry. In fact, I was excited to get an “emergency” detailed ultrasound because they would see if it was a boy or girl!

 Should I be angry at God?

Within seconds, I could read the doctor’s face. Something was not right. We threw questions at him but he dodged them. Is something wrong? Is it a boy or a girl? Why can’t you tell? I am already 18 weeks! He told me to walk around outside and come back in 5 minutes. We came back. He told us the news. Due to a rare syndrome called Potter Syndrome there is no amniotic fluid. Zero. The baby’s kidneys don’t produce urine and there was zero percent chance of this baby living.

The news didn’t sink in right away. I was not sure I heard him right. But then the tears came. Then the anger. And suddenly I felt furious at God. I couldn’t believe how cruel God was, how unfair, how unjust. I needed this baby. 

Go to 9 months?

That night was torture. The next morning we went to the hospital to meet my own doctor, and a specialist. They confirmed everything the doctor had said the night before. This wasn’t a case of 80% chance, nor 50%, not even 1% chance. This wasn’t a case of a child that might have special needs. This was a case of 0% chance. It was unclear if the baby could survive until 40 weeks or if it would survive the birth process, but then there was no question, it wouldn’t survive more than a few minutes in this world. I was told that this was not a baby that should be carried to 9 months and that I would need to terminate the pregnancy.

Surgical abortion or delivery?

The doctors gave me the choices. I could have a surgical abortion. But the hospital I was in would not do it so I would need to go to a different city. Or I could birth the baby. I didn’t need to think about this: I wanted to be put to sleep and wake up with it all over. I did not want to give birth without having a baby to take home afterwards. But the (very famous) doctor gave me some wise words and said: just think about it. She told me to take a few hours and do some research, talk to people, and think. Most women choose to deliver and that was her recommendation.

I went out to the gardens of the hospital and I noticed it was a beautiful day, besides for the fact that it wasn’t. My husband and I cried bitter tears and then started making calls. It was like shopping, “purchasing” wisdom, advice, opinions, halacha, information, facts, past experiences, and hard-earned knowledge. After many hours I realized that as hard as a delivery would be, the pros significantly outweigh the cons.

(If you find yourself, heaven forbid, in a position where you need to make this decision, please reach out and I am happy to explain both sides and why I made, and most people make, the decision to deliver).

It was clear. This baby had to be delivered and buried whole, and I would have to go through the difficult experience.

Push off travels?

The next decision was an especially hard one.

My 34 year old special needs sister has been sick for a while, and  I needed to go to NY to visit her and help my mom with some difficult decisions. I heard the news on Thursday, and was meant to fly on Sunday. I felt strongly that I couldn’t push off my trip, but how could I travel? How could I walk around with my protruding belly while knowing that this baby was never going to survive? How could I see friends and neighbors and hear  “Besha’ah Tova! I’m so excited for you” and answer their questions “When are you due? Do you know what you are having?”

I spoke to more people. I got medical advice, spiritual guidance and therapeutic assistance to make my decision. Weighing all the many complicated details, this was not a trip that could be pushed off. With the blessing and support of my beloved husband, I decided to go. 

Think about it or push it aside?

I discussed with professionals whether or not to tell my special needs sister and I was advised not to due to her difficult circumstances. I flew to NY with my 19 month old and the clear decision that although I wouldn’t ignore my reality (I journaled every night about it), I would also put it “aside” for a week.

I spent the next 7 days engrossed in meetings with my sister’s staff and doctors, collecting information, and seeing the situation for myself. I spent hours with my sister, and my 94 year old grandmother.  

Now what?

I got back Tuesday morning. I was at the hospital on Wednesday ready for one of the hardest days of my life. My doctor confirmed there was still a heartbeat and then explained what needed to happen before the procedure began. First, I needed to get the medical committee to agree to the termination, but it was too late to start that process for the day. I was told to go home and come back the next day at 8am. In my high-anxiety state, I decided I wanted to check myself in, like it was some beautiful hotel suite, and be at the committee by 8 am with a bracelet around my wrist showing that I would not leave the hospital until this was done. But after a few hours in the ER and speaking to yet another gynecologist, I was told they would not admit me and I needed to go home and come back the next day. After 8 hours in the hospital, emotionally spent, my husband and I crashed at my mother-in-law’s house, while she was at my house with our kids.  

Fight or accept?

Again, with a heavy heart and the need for mental strength, we left for the hospital and were in the office at 8am. However, the secretary didn’t show up until 9. And when she did, she told me to sit and wait for my name to be called. The only way to describe the next few hours is psychological torture. First I needed to fill out a million forms with the nurse. Then I needed to wait to see the doctor. Then I had to sign forms. Then I had to wait to see the social worker. Then I had to sign forms. Then I had to wait until 3 doctors from the committee signed off on the termination. By the time this was all done it was 3pm and I was told that not only could I not start the process of delivery that day, but because it was Thursday, and the following Sunday was Rosh Hashanah, I would need to come back the following Wednesday, after the holiday.

No more choices 

At this point I decided that until now I had been trying to take a situation that was completely out of my hands and dominate every aspect of it that I could. But at this moment I realized clearly that none of this, not even the when, was in my hands, and that God was going to decide when this baby was going to come out and how. I suddenly understood the words Besha’ah Tova and  honestly, during Rosh Hashana davening, I felt strongly that my baby was meant to be “in this world” for Rosh Hashana. Once I let go, everything became so much easier. We went home, had Shabbat and Rosh Hashana, and Wednesday morning, made our way to the hospital yet again. 

We checked in, got our room and waited for the anesthesiologist to give me an epidural. I was grateful that I didn’t need to make that decision; they told me the quantity of drugs to induce labor was so tremendous, that I really would need an epidural. After waiting a few hours for someone to arrive, the process didn’t go very well. After two failed attempts and a lot of pain, she left and we waited another few hours for another anesthesiologist. This time, the doctor had magical hands and it went smoothly. As soon as I was lying in bed, starting to feel the tingle of numbness, I thought: from the belly down, my body represents everything I feel right now. I am not in control at all, I can’t stand on my own two feet any longer, and I am completely in the hands of God and the medical staff. 

After 7 hours of throwing up, stomach issues which we will not discuss, chills and chattering teeth, boiling hot with fever and severe cramping, I delivered a baby boy. A baby boy who wouldn’t even breathe in this world for one day. 

The hardest decision of all

They had told me to think about two things before we got to the hospital: did we want to do genetic testing on the baby and did I want to hold the baby? I had not made a decision about either one. When I saw the nurse take the baby away to wash him off and wrap him up, I heard wailing and screaming and crying and knew it was me, but it was such an out-of-body experience. They asked me if I wanted to hold or see the baby and all I could say was “I don’t know…I don’t know…”. My husband, the love of my life and my rock, decided he did want to hold the baby. So behind the curtain he held our baby and caressed his skin. Only when I felt a tremendous pain of jealousy did I yell, “I want to see my baby!” I held him on my stomach and as I breathed, it looked like he was breathing. He was so small, so purple, so similar to the face of my toddler at home. He looked like he was sleeping but his eyes would never open. For 40 minutes we sat there with our baby, crying, talking to him and memorizing his every crease. When they finally told us it was time to take the baby, I felt it was a good idea…before I became even more attached to this baby I would never bring home. We said goodbye and then just stared into space with an eerie silence. 

I still had the added trauma of a D&C, but my husband and I walked out of the hospital 16 hours after I delivered my baby that never lived. 

Decisions, Decisions, Decisions….

Let’s face it. It was not my decision to nest a baby for 21 weeks and then let it go. It was not my decision that this baby would be buried and would never see the light of day. It was not my decision to terminate this pregnancy. But I did have to make some decisions in the process and I have zero regrets about any of them. As I am home now recovering I keep thinking about this pure little neshama, and his face, and with my tears and my pain I know at the end of days he will be mine again. I am still drowning in sadness. But with that sadness, I still see so much chesed. There were many small cheseds along the way and some very big ones. Even in the hardship, we saw the hand of God very clearly again and again and again. I am also so grateful to have the most incredible friends and family who were an amazing support system. I am grateful for the fantastic staff at the hospital.  It is also comforting to know that I am not alone and that so many people have gone through similar and even more difficult experiences than this – there is no lack of company when it comes to pain around children and bearing children. I also feel some comfort in knowing that my baby was buried in one piece, and in Eretz Yisrael, and that I was able to do that chesed for him, even though I was robbed of the  privilege of doing a lifetime of chesed for him as his mother. 

I walk away from this experience feeling proud that I did something I never thought I could do, happy that I walked through the process every step of the way, thankful to my incredible husband who is my everything, and excited to (please God) be given the opportunity to have another healthy child who we can hold and cherish and love forever. In the meantime, this baby will live on in my memory, my writing, my mother’s painting that she drew in honor of the baby, the additional candle I will light every week before Shabbat, and in our minds and hearts. He will live forever in our souls.