When Yaakov and Aliza found out that they were expecting twins, they were overwhelmed and excited. But at the end of the first trimester, their joy turned into worry. Aliza had taken some standard prenatal tests, and instead of the usual “all-clear,” the doctor asked to meet with them. One of their babies showed signs of trisomy 13—an extra copy of her thirteenth chromosome.
The condition causes severe deformities that are incompatible with life. Most babies don’t survive to term, and for those who do, the average lifespan is less than two weeks. It was essentially a death sentence.
In most cases, the parents of a trisomy 13 fetus can wait for the baby to be born. In this case, however, since Aliza was expecting twins, the doctor gave them only one option. They would have to abort one baby in order to save the other—and as soon as possible. Otherwise, the healthy baby might be affected.
Still, Aliza’s doctor was cautious. “It’s just an initial blood test, and with twins the numbers can sometimes get funny.” He recommended that she undergo chorionic villus sampling, or CVS, in which a few cells are removed from the placenta for DNA analysis.
Yaakov and Aliza researched the top maternal-fetal practices in New York and found one of the best doctors in the country, Dr. Andrei Rebarber. Dr. Rebarber had nearly 30 years of experience, offices all over the city, patients from all over the world—and a lot of experience with trisomy 13. They scheduled the test as early as they could and made the drive down from Monsey.
Yaakov was confident that the initial results had been a mistake and that everything would be fine. Aliza, though, was nervous—and for good reason. It can take weeks to get CVS test results back, but her preliminary results were available two days later. They were devastated to learn that baby B did have trisomy 13.
Yaakov and Aliza spent hours that night reading about trisomy 13 online, looking for a ray of hope, some cause for optimism. There wasn’t any. The next morning found them once again in Dr. Rebarber’s office. The preliminary results, he told them, were 99 percent accurate.
They jumped on that number—99 wasn’t 100! But even that sliver of hope was not to be their salvation.
“In less than 1 percent of cases,” the doctor explained, “the baby has a mosaic form of the condition, meaning that half the cells are healthy and half are affected. But even then the baby can’t live more than a few months. I would advise selective reduction—terminating baby B as soon as possible so that baby A isn’t affected. I’ve had Orthodox Jewish patients before, and I know that the rabbis permit it in such cases. Please consult with whomever you need to, and then call my office to schedule the procedure.”
Back in the car, a stunned Yaakov called his rav, who put them through to a rav who was an expert in these types of sh’eilos. It was late Friday afternoon, and time was of the essence. Any delay could be harmful to the other baby.
“In order to save the twin you can undergo the procedure,” the rav told them.
But it was too close to Shabbos, and Monday was a legal holiday. The soonest they could schedule the procedure was Tuesday.
It was a long, emotional weekend. They hadn’t yet shared the tragedy with anyone in their families and would have to say goodbye to their baby alone. Yaakov was in touch with his rebbe in Israel, who in turn consulted with the Amshinover Rebbe. He reminded them that “mei’ayin yavo ezri”— Hashem’s yeshuah can come from ayin, nothingness.
During their many trips between Monsey and the city, Yaahov and Aliza listened to music. One of the songs on a CD by Yosef Karduner became their anthem: "V'afilu b'hastarah sheb'sock hahastarah, b'vadai gam sham nimtza Hasham Yisbarach - Hashem is found even in extreme concealment."
By Tuesday morning they'd managed to come to terms with their loss. They reminded themselves to appreciate the great brachah of their one healthy child. They arrived at the doctor's office, and when they were called into the examination room Aliza began to cry. The enormity of what was about to happen hit her. Yaakov tried to comfort her as the sonographer tried to locate baby B. But it seemed to be taking a while.
"What's going on?" Yaakov asked. "I need to take some final pictures before we begin," she explained." But half an hour later she was still looking. She seemed to be concerned about something and called in Dr. Rebarber. They listened as the doctor and sonographer had a discussion peppered with incomprehensible technical terms and pointed to various parts of the screen. The doctor then turned to the couple.
"I don't want to give you false hope, but for now I'm going to send you home," he said. "At this point, a trisomy 13 baby would have formed abnormal growths on the spine, but I don't see any here. I did say that there was a 1 percent chance of mosaicism." Again he stressed that even if the baby did have the mosaic form, the chances of her survival were still slim.
Even though Dr. Rebarber had cautioned Yaakov and Aliza to keep their expectations low, they were unprepared for the emotional roller coaster that followed. Four days later the full report came back, confirming an extremely rare case of mosaic trisomy 13. Of the 20 DNA markers sampled by the CVS test, only three were affected; the others were completely healthy. In a typical case of mosaic trisomy 13, half the cells are normal and half are abnormal. So this was very unusual.
Dr. Rebarber then recommended another test that would sample cells from the amniotic fluid rather than the placenta. There was an extremely rare form of mosaicism in which the unhealthy cells were confined to the placenta, with one occurrence among many thousands of cases. It was their last chance.
Yaakov and Aliza scheduled the amniocentesis, not daring to hope. It was two weeks before Purim, and they davened fervently. At this point, a few close family members were aware of the situation and also stormed the heavens. At 10:30pm on Purim night the phone rang. It was Dr. Rebarber. "It's a Purim miracle," he said. "The trisomy is confined to the placenta. G-d willing, your baby will be all right. Enjoy the holiday."
Still it wasn't all smooth sailing from that point. The 1-in-100,00 diagnosis meant a high risk pregnancy, with many more scans over the next few months to ensure that the fetuses were developing properly. But Aliza eventually gave birth to two healthy girls.
At the seudas Hoda afterward, Yaakov shared the story with the crowd that had gathered, and thanked Hashem for the grace He had shown them. He added a point: "It says in chazal that even if a person has a sharp sword placed at the side of his neck, he should not consider himself removed from the possibility of rachamim from shamayim. That's true of a person's own situation, and now my wife and I have experienced how that applies to a person's child as well."