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Facing a Possible Birth Defect: My Story

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“It’s very clear. It’s the head,” said the ultrasound technician in a thick Israeli accent. She’d been called in to consult on my ultrasound which was beginning to take much too long. She was speaking in English because not having spoken to me or even really looked at me, lying there on the table in a Jerusalem ultrasound clinic, she had no idea that I spoke that language—had no idea that I’d, in fact, grown up in Pittsburgh, Pennsylvania, or that I worked as a writer for the American nonprofit Kars for Kids.

What’s the head?” I asked, no longer willing to be quiet and compliant, with no thoughts or voice. This may have been my tenth pregnancy, with nine children waiting for me at home, but it was my baby they were talking about. I had a right to know what was wrong with his head.

I knew that’s what they were thinking. And it was my responsibility to know what it was: what they were thinking was wrong with my baby. I needed to know what to do.

But the minute I uttered that three-word sentence, everyone went mum. No one wanted to tell me what it was, what was wrong. And my heart began to sink. “It must be something really bad,” I thought.

They made calls. A very important ultrasound specialist would fit me in the next morning. Would I be able to make it at 10 AM? Of course.

They gave me a letter in a sealed envelope. It was for the specialist, not for me. But waiting outside the building for my husband to pick me up, I could not resist. I needed to see what the letter said, what it said was wrong with my baby.

Hands trembling, I slid open the envelope to read what it said. Two words jumped out at me: “Rosh tiltan.”

I knew that “rosh” was “head” and I thought “tiltan” was some kind of plant, but I had absolutely no idea what the significance of these two words put together might be.

A doctor came out of the building. Not my doctor, but a different doctor I knew by reputation only. I asked him if he could help me read the letter, because I didn’t understand what it said. Wanting to be helpful and pleased to be called on in a matter of his expertise he held out his hand for the letter. I watched him read the words and saw his face change. In some haste, he shoved the letter back into the envelope and handed it back to me. “You need to show it to your doctor,” he said, and walked away before I could respond.

I waited for my husband. It seemed to take forever for him and his car to make their way to me. An old man shuffled by, emaciated, bent over, in a thin cardigan and tweed flat cap. “Ma’am,” he said to me, pleading, his eyes like two dark holes, “When will there be bread in the stores? When?”

I was too immersed in my own anguish over my unborn child’s fate to deal with this man. He might have been a Holocaust survivor revisiting an old trauma. Or he might simply have been dealing with dementia. But I had no reserves of pity or patience for him at that time and so I pretended I didn’t see him. Didn’t hear him. (Later I was to worry and spend sleepless nights thinking that perhaps the man was Elijah the Prophet in disguise. Someone who could have magically made my baby’s birth defect disappear if only I treated him with kindness.)

The old man continued his sad way down the street. I let out a breath I hadn’t known I’d been holding in. At last my husband’s car pulled up.

I told him. His Hebrew was better than mine, but he too, could not remember the meaning of the word “tiltan.” It was enough we both knew that whatever was wrong with our baby, it was in the vicinity of his head, which meant it was most likely something to do with his brain.

Both of us were immigrants to Israel. I was from Pittsburgh, my husband from Chicago. It was hard enough navigating the ins and outs of pregnancy and the medical system in English, even harder in Hebrew.

We drove to the mall to run an errand and that’s when I saw that one of the mall gates was named “Tiltan” and there was an icon showing a sprig of clover. “Clover?” I asked puzzled. What could that mean?

We finished our errand and my husband had a brilliant idea. “Let’s go to the hospital and see if your doctor is there. We can show him the letter and see if he can tell us anything.”

That is just what we did. My doctor was a Russian immigrant, very handsome, with a shock of white hair, but a youthful face. He was always calm, always kind. We found Dr. Pinelis and handed him our letter which seemed to weigh nothing much at all, considering the weighty information it carried. Dr. Pinelis read the letter, then looked at the printout of the ultrasound.

“They are looking for something called ‘cloverleaf skull.’ I don’t see it. Everything looks fine to me. But you’ll see the specialist tomorrow morning and make sure. Then you’ll come back and tell me what he says.”

These simple words came as a huge relief to both me and my husband. Things were much less frightening now. It was a good thing we’d sought out my doctor. He didn’t see it! He didn’t see it! I thought to myself. The words sang over and over again in my heart: he didn’t see it.

Dr. Pinelis was reassuring. Still, I tossed and turned that night. The doctor had shown me photos of clover leaf skull in one of his books. It was a dreadful thing. The skull didn’t close but opened out so that it resembled a three-leaf clover. The baby wouldn’t be able to survive like that.

That is why they were rushing me to see a specialist. If cloverleaf skull were confirmed, I would be scheduled for an abortion. Though we are orthodox, it was clear no rabbi would forbid an abortion for a baby that could not live. Even so, this was a weighty matter to contemplate as a religious couple used to putting the sanctity and preservation of life above all.

My restless night left me groggy and still fearful. I was glad and worried when it was finally time for me to go see Dr. Kreisberg: glad that I would soon know what we were dealing with, and worried my worst nightmare would be confirmed. I placed my two hands over the slight swell of my pregnant belly as if I could shield my child from the truth.

When we got there, there were at least 9 women in various stages of pregnancy awaiting their appointments with Kreisberg, the big deal ultrasound specialist. But I was waved in ahead of all of them, which made them snarl at me while worrying me all the more. Clearly, I was an emergency. Which is exactly what you don’t want to be when you’re pregnant.

Dr. Kreisberg performed an internal ultrasound. Or tried to. But my bladder was too full to see the baby. I’d drunk many cups of water before my appointment, thinking the doctor would want my bladder full, as is usually the case during early pregnancy ultrasounds. As it turns out, my bladder was so full it was obscuring the fetus. Dr. Kreisberg sent me out to use the ladies room, telling me to come back when I was done.

I did what had to be done and returned to the doctor, earning glares from the nine women waiting to see him, all of them with bladders as full as mine formerly had been. But when the doctor tried to see the fetus, again, he found my bladder still too full. He sent me back to the bathroom, and even once more after that. It seems that I’d already hit my fourth month and at that stage, there was no need for a full bladder during ultrasound exams. Those women waiting in the waiting room—if looks could kill I’d have been dead three times over by now.

This time Dr. Kreisberg could see the baby. “I don’t see a cloverleaf skull, but I do see something else.”

Oh my God. So there was to be no reprieve from worry and alarm? What now??

“The back of your baby’s neck is thicker than usual. You see, there’s this short window of opportunity where the skinfold at the back of the baby’s neck is transparent. We call it ‘nuchal translucency.’

“When more than the usual amount of fluid collects there, it thickens. This is a risk factor for Down syndrome.”

I sucked in my breath.

He continued, “It doesn’t mean your baby has Down syndrome. But his risk for Down syndrome is higher. You’ll want to speak to your doctor about amniocentesis.”

We’d gone from aborting a baby with no chance to live, to having a baby with Down syndrome. I couldn’t even imagine how we’d cope with such a challenge considering we had nine more children at home. But amnio! Didn’t that cause contractions and miscarriages?

My head was frantically trying to switch gears. And not doing a great job of it.

My husband and I went with the ultrasound results to Dr. Pinelis. Once again he was reassuring. “There are other tests we can do as your pregnancy progresses. We can measure the femur, for instance. Of course, you can do amniocentesis if you want to be sure.”

“But doesn’t that come with a risk of miscarriage?”

“There is some risk, yes,” said Dr. Pinelis. “Look, you’re orthodox. So even if you knew your baby had Down syndrome, you wouldn’t abort. There really isn’t much point in your doing amniocentesis, this being the case.”

He was right. What if the test proved positive for Down syndrome? Would it change much in the way I’d handle my pregnancy and its aftermath? And what if it proved negative for Down syndrome but sent me into labor and subsequent miscarriage? This was not a risk we were willing to take.

I’d just have to wait and see. And that is how it was for the next five months. I didn’t know whether my baby would be born with Down syndrome. I worried and waited and worried some more.

Subsequent ultrasounds showed the various measurements that might suggest Down syndrome were all within normal range. Still, there was no knowing which way things would go until the baby made his long-awaited appearance. It seemed like the longest pregnancy ever.

The birth was almost beside the point on the day it finally happened. It was as long and as painful as any birth, but the main thing was that I would finally learn the truth. I just had to know.

The baby was born. “Does he have Down syndrome?” I asked.

“Nope,” said the midwife. “He looks just fine to me!”

“Let me see him,” I said, and with that, she laid my new baby in my arms.

I looked at him carefully. He had almond eyes. Like me. Like ALL my children. But were they almond eyes or the eyes of a child with Down syndrome? “Look at his eyes,” I demanded of the midwife. “Are you sure he doesn’t have Down syndrome?”

“Absolutely positive,” she said.

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I would have loved my child, Down syndrome or not. I know Down syndrome children to be loving. I know they bring joy to their families.

But I don’t know that I could have managed with my large family. I don’t know that I could have cared for a Down syndrome child as he would have deserved. And so I accepted with great relief the knowledge that my baby would have only the usual struggles and obstacles of growing up to overcome, and the same familiar milestones to achieve as any other.

Today Moshe is 20. He’s perfect in every way except that he’s short. Way short. But he doesn’t mind it one bit. He’s too self-assured to be bothered by something like his height.

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He has eclectic taste in music listening to everything from Lana Del Rey to Frank Sinatra to Bruno Mars. He’s not afraid to cry and self-describes as “metrosexual.”

I look at him and think how glad I am that I didn’t risk amniocentesis.

He was more than worth the worry.

Varda Meyers Epstein is the mother of 12 children and a parenting expert and writer at Kars4Kids, a Guidestar gold medal charity. When not doing laundry, Varda maintains the Kars4Kids educational blog for parents. Find her on Facebook, Pinterest, Instagram, and Twitter.

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