Friday, July 1, 2011

All Kinds of Tests: based on a true story

Malka was the most surprised of all when her pregnancy test came out positive.

"I was sure I was going through menopause!" she exclaimed to the nurse.

The nurse read Malka’s expression of shock, excitement and concern. She immediately brought up the subject of testing.

"At forty-eight, your chances of having a Down syndrome baby are high. You need to have an amniocentesis.”
Malka groaned silently. “Here we go again,” she thought. She had been urged to do prenatal testing when she was pregnant with her last child, now a healthy ten-year-old.

She remembered the doctor assuring her that it was important to do. “You can always get a heter for an abortion if anything is wrong,” he pressed her.

Malka had given him a skeptical look. How could permission for something as serious as terminating a pregnancy be given out indiscriminately? Since then she had learned that there was no such thing. A rabbi would decide on every case, individually.

Bursting with the news, she couldn’t wait to tell her husband. Aharon reflected the same emotions she had—shock, excitement and concern. They did some math and realized how old they would be when this child graduated school. That took their breath away. And then they discussed what the nurse had said.
"I learned once,” Malka said, “that the Chazon Ish stood up for retarded people because their souls are so pure that they don't need the correction of Torah and mitzvot.  I think there are worse things in life than having a Down's syndrome baby."

Aharon opened up the computer and checked out late-in-life pregnancies. Eighty per cent of women age forty-eight who were pregnant did not carry the child to full term. Aharon and Malka looked at each other. Is that what they wanted? If Malka miscarried then they wouldn't have to worry about Down's syndrome or about being elderly parents.

"I've had six healthy pregnancies," Malka announced. “There is no reason why this shouldn't be also."

The next day, Malka and Aharon got an appointment with the obstetrician. "I recommend that you have the amniocentesis done between 16 and 20 weeks.”
"Doctor," Aharon asked, "isn’t there a risk of miscarriage with this test?”

“It’s one in two hundred,” the doctor dismissed Aharon’s concern.

“Well,” Aharon continued, “is it dangerous for my wife to be pregnant at forty-eight?"

The doctor shook his head. "She’s healthy. If she eats right and gets enough rest, she should be fine." He busily scribbled on a note pad and handed the paper to Malka. "Here are the blood tests you should have done at your local clinic."

The following day Malka found herself sitting nervously in front of her family doctor.

"The obstetrician says being pregnant at my age will not affect my health. The only real concern is problems with the baby and—"

"Malka,” the doctor interrupted her. "You're no longer young, and if you give birth to a Down syndrome child, the responsibility for its care will ultimately fall on your children. I don't believe that's the legacy you want to leave them."

Malka felt her face flush as she tried to articulate an answer that would explain her feelings without making her sound like an elderly Pollyanna.

"I know a family who has four children. Three are exceedingly bright and talented. The fourth, Avi, was born severely retarded. His mother told me that once, two of her children had a knockdown, drag-out fight about who would be allowed to care for Avi after their parents died."

Malka paused, wrung her hands, and hoped her words came out right. "If I could foster that kind of love in my children, it might be worth having a Down syndrome child."
The doctor smiled at her. She was a mother too. Malka felt herself relax. “I understand there’s a simple blood test that does not present the risks of amniocentesis…”
The doctor shook her head. “The alpha-fetoprotein, AFP, does not have the accuracy of the amino.”

Malka left the office fighting depression. Down syndrome was the bogeyman that everyone spoke about. But there were so many other things to worry about. Maybe she and Aharon were too old to raise the child properly? Would they even live to marry off this child? Are there any guarantees in life? Look at their neighbors—the father was killed in a car accident. He didn’t even make it to their first Bar Mitzvah.

Malka knew she could never abort a child because it was less than perfect, but people were making her feel that she was doing a sin by allowing her pregnancy to proceed naturally.

"As if any child is perfect!" She exclaimed to Aharon.

A few days later the two of them found themselves seated in the rabbi’s study. He heard them out patiently as if he had all the time in the world. When they were finished, he assured them that they were not the first couple with these concerns. He told them that there were several women who did the AFP test and it showed every indication of Down syndrome. However they decided to disregard the results and ended up having healthy babies.

"For us, the purpose of the amniocentesis is not to decide whether or not to have an abortion," the rabbi shook his head. "Rather it is a tool to help prepare you for the possibility of having a special child. However, if you feel you and your family are ready to love a child with Down syndrome, to make the enormous effort to give him a normal life, then you don't need to do the testing. Only you can decide that. Take some time to think it over." 
The following day Malka casually dropped by a neighbor who had given birth to a Down's syndrome child two years earlier. She was able to bring the conversation to the subject of over- forty pregnancies without revealing her own status.

"Did you have the amniocentesis?"

The neighbor shook her head adamantly.

"Didn't the doctors give you a lot of pressure?"

The neighbor smiled. "I pushed off my first prenatal visit till after it was too late to do the test."

"Have you," Malka hesitated, hoping she wasn't being tactless, "Have you regretted not doing the test?"

“Absolutely not! I had a marvelous pregnancy and a great delivery. If I had known I was carrying a Down’s syndrome baby I would have worried sick."

“Do you feel your life is better with Dovie?”

“He has added so much, and then more. Don’t think,” the neighbor laid a hand on Malka’s arm, “that it’s not hard. He’s going to be a baby a long time and I’m not as young as I used to be. But he has given so much to our family. Every day.” Her fond glance rested on her retarded son who smiled happily as he chewed his finger.

Walking home Malka remembered that she had heard one of her favorite teachers had adopted a newborn baby with Down’s syndrome. Her teacher’s voice sounded the same over the phone as it had sounded in class several years earlier. It didn’t take long, after exchanging pleasantries, to bring up the topic of the baby.

“Oh, we didn't adopt her, in the end,” the teacher explained. “In fact, we only had the baby for four months. Then the family decided they could handle her and she’s been with them ever since.”

“That’s wonderful!” Malka took a deep breath. “Tell me, I have an older friend who’s expecting and she’s getting a lot of pressure about prenatal testing. I thought you’d have an opinion because of your experience.”

If her teacher suspected Malka’s story was not one hundred per cent true, she gave no indication. “If Mindy’s mother had done amniocentesis, the family might have taken Mindy straight home from the hospital. Maybe they needed those four months just to accept their new reality.”

Malka didn't feel she needed any time to adjust. After all the dire predictions she had heard, it would be a shock if her baby was healthy.

With Aharon’s agreement, she decided to confide in her friend, Tammy, whose third daughter had been diagnosed with leukemia a year before. Malka was not shocked by the intensity of Tammy’s reaction.

“Some doctors think they can run the world with their statistics and tests. Only one in two hundred will have a miscarriage? Well, you may be that one. And suppose you do the test and everything is fine. Then what? I gave birth to a healthy child. No one predicted my daughter’s cancer. And believe me, I would never have picked this test in a million years. But this is what HaShem sent us and we’re going to grow from it.”
It was Tammy’s words that gave Malka the strength to decline the test.

“At my age, the chances of carrying this baby to term are small. If HaShem wants us to have this baby then we’ll have it. If it has Down syndrome then we’ll deal with it. HaShem never gives us a test we can’t handle.”
“Every soul has a purpose in this world,” Aharon agreed.

In the end, Malka had a miscarriage at eight weeks and the rabbi helped Aharon bury the fetus.

"It's almost as if HaShem didn't find us worthy of meeting the challenge," Aharon told his wife when he returned home from the cemetery.

Malka nodded. Her tears would come with time. In the meantime she looked at her six children and knew that blessings -- and tests -- come in all types of packages.

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