"You have that glow," my husband said, as he so often notes when I am pregnant. I love being pregnant. The joy of being continually creative, even while I sleep, permeates every part of me.
This was my third pregnancy and it was going blissfully well, with my typical nausea and inability to eat meat, but not much worse. My past pregnancies had been easy, low risk, and just wonderful, and I wasn't expecting anything different. I suppose nobody does.
How things can change in an instant. My kids woke up early one morning and were crying in their cribs. Lying in bed bemoaning my early risers, I suddenly felt a huge gush of blood; then came several more. I stumbled out of bed and got dressed just as my husband was returning from shul. "I'm bleeding. I think we need to go to the hospital." Once the kids were up and dressed, we decided instead to go to the local clinic where we were squeezed in to see a doctor.
As we waited for an ultrasound, I mentally prepared myself to hear that the fetus was not alive. "There is a heartbeat," the doctor said. She explained that there was no cause for the bleeding that she could see on the ultrasound. Her advice was to rest, pray and schedule a follow up ultrasound for the next week.
We came back home and made preparations so I could rest up as much as possible. My husband would do the laundry and grocery shopping, and I got cleaning help and looked into afternoon babysitters. We discussed going back to the States to be near our parents. I was only in my 10th week; 30 more to go. But we would do whatever was necessary to ensure a healthy baby and a healthy birth.
After a long week of sitting on the couch, we went for the follow up ultrasound, expecting everything would be fine. It wasn't. "There's some fluid around the sac that isn't supposed to be there," the technician told us. She arranged for us to come back the next day to see the ultrasound doctor. I noticed she had written in Hebrew something about the structure of the head not being proper.
"Did you see this?" I asked my husband.
"She just means she can't see the shape because of the extra fluid," was his answer. I nervously accepted his reply.
We arrived the next day to see the doctor. I studied the poster on the wall with pictures of the fetus at different weeks of a pregnancy. At 11 weeks, the fetus already looks like a baby. It's less than five inches long, and has a face, hands, and legs. I rubbed my own tummy thinking that's what my baby looked like.
Just like that. I had been carrying life, and now I was carrying death.
The doctor spent a while examining the ultrasound and then said abruptly, "There is a problem." The words no pregnant woman ever wants to hear. "There is a hole in the skull, and the brain is not in the skull. This baby is not going to live, and you should terminate your pregnancy."
Just like that. I had been carrying life, and now I was carrying death. The tears started to pour.
"How sure are you?" my husband asked.
"Ninety percent," he answered.
He told us to schedule a D&C. I waited outside while they finished up some paperwork, trying to make sense of everything, but nothing made sense. All I wanted to do was to get it over and done with. The thought of carrying death was too overwhelming for me to handle. I sat there crying and rubbing my tummy, agonizing over the fact that this baby, whose heart was beating and was clinging to life, was going to die. At the same time, I was dealing with my not-yet-one-year-old in the stroller, who was whining and wanting attention.
We consulted with our rabbi who said we should wait with the D&C and get a second opinion from an expert. We had to wait until Monday to see my ob-gyn (it was Thursday.) This was going to be a long weekend.
When we got home, I noticed that the doctor had written "encephalocele" on the printout of the ultrasound as the diagnosis. Encephalocele is one of three neural tube defects, the best known of which is spina bifida. The neural tube in a fetus is what eventually develops into the central nervous system, with the brain at the top descending into the spinal cord. Spina bifida is a condition which occurs when there is an incomplete closure of the spinal cord, and a sac develops at the point of closure outside of the body. This is one of the reasons pregnant women are instructed to take high doses of folic acid, which has been shown to help prevent this terrible birth defect.
The second neural tube defect is called anencephaly and occurs when the skull fails to close, and the brain doesn't develop properly. These babies die within hours or days of birth.
An encephalocele is when the skull doesn't close completely, and a sac develops outside of the head containing fluid and often brain tissue. Depending on how much brain tissue is in the sac, the baby may or may not live, or will be retarded at birth.
The next few days were very difficult as we began to envision giving birth to this baby that would probably die in my arms. What would we tell people when I started to show? "B'sha'a tova, that is so exciting!" they would say. How would I answer? I just kept thinking that if this is what the Almighty wants from us, then this is what we are going to do. It was comforting to know that it was all in God's hands.
I was very weak and tired, more so than I usually am while pregnant, and I realized that it was probably because the baby was taking everything out of me in order to survive.
We finally met Dr. Nagari, a leading physician, who had a 3-d ultrasound machine. As he examined the baby, I watched its little body all curled up, moving around. The doctor sat down with my husband and me, and I was trembling with anxiety. "This baby has anencephaly," the doctor began. "He is not going to live."
I couldn't believe my ears. "How sure are you that he is not going to live past 30 days?" we asked.
"100% sure. This baby can not live."
When faced with this terrible prognosis, some courageous women choose to carry the baby in spite of what they know the outcome will be. I am not one of them.
As odd as it may sound, a tremendous relief washed over me. Apparently the baby had a form of this birth defect where the brain is not in the skull and was therefore disintegrating in the amniotic fluid.
When faced with this terrible prognosis, some courageous women choose to carry the baby in spite of what they know the outcome will be. I am not one of them. With counsel from our rabbi, we chose to save my limited strength to care for my children who are living, who depend on me, who need me to be capable and loving, who need me to help them develop to reach their highest potential.
We don't know why we were chosen for this test. But there have been obvious results. I feel tremendous compassion for all people in difficult situations. I view my children, more than ever before, as an amazing gift from God. I realize how much we are not in control of what happens in this world, and that the only thing in our power is to choose to be good. Nothing in life is a given, and we must be so thankful for all the good that the Almighty, who wants the best for us, bestows upon us. The good far outweighs the hardships that are minuscule in comparison.
We will not forget this baby, and I will forever carry its memory with me. I know that the soul of my baby will come back to me when the Mashiach comes, and we will bask together in the glow of God's absolute warmth and love.