She was a miniature baby with organs which begin to fail even before they had begun to work, a malfunctioning liver, an intestine cut in two, and too many copies of her 18th chromosome. She lived and died in the space of a month and passed away on her 21st day. She has no grave to call her own.
She was my cousin, a little girl with Trisomy 18. Trisomy 18: caused by an extra copy of chromosome 18, characterized by mental retardation, by a plethora of organ issues, by a deadly set of statistics. Half of the children with Trisomy 18 don’t make it past their first week. Only 10% pass their first year. Heart defects, kidney malformations, and protruding intestines abound.
For my little cousin, it was her intestine as well as her liver. She was rushed to a different hospital for surgery. My aunt, exhausted, left alone in the maternity ward, felt a double sense of loss when she saw other mothers kissing their newborns. Her own newborn spent the entire course of her short life in a sterile room at the hospital. Her siblings never saw her, because entrance was granted to few. My aunt and uncle rushed back and forth, checking on their baby and then running home to their other five children. One day a nurse told my aunt to come back the next day with a camera.
“So you’ll have memories,” the nurse said.
It was a subtle way of communicating what they’d already been told in a dozen different ways: your child will die, she’ll die soon, better start getting read
No parent wants to die after their children.
I asked my aunt, who is deeply religious, if she would have had an abortion, had she not been religious and had she found out in the first month.
“I didn’t know in the first month,” she responded quietly. “And I’m glad I didn’t know in the first month.”
When I first heard the name Batsheva, I thought my cousin had been named after Pharoah’s biblical daughter who saved baby Moshe. My aunt corrected me. Batsheva was named after a dream.
She had been urged to go to Rebbetzin Batsheva Kanievsky, a spiritual woman who was known to give meaningful blessings to pregnant women. During the seventh month of my aunt’s pregnancy, she dream that the Rabbanit’s father had died.
“I went to comfort her but instead she comforted me. She prayed over me for a long time. And the diagnosis was a month later.”
Galit described to me the day the baby died.
“I went into the bedroom to rest,” she said. “I was only half-conscious, and around four in the afternoon I had a feeling of deep sadness.” The hospital called, saying only that they “highly recommended” that Galit and Avi visit the hospital as soon as they could.
“We came and she was gone,” Galit said.
My aunt took a deep breath.
“It was a relief,” she said, tears glinting in her eyes.
Batsheva, by dint of having died less than a month old, was considered a stillborn in Judaism. A child is only considered fully alive if she lives past the age of one month; Jewish law demanded that Batsheva be born in an unmarked grave. In addition, the usual Jewish ritual of mourning, “shiva”, was denied to the family.
“What do you do to remember her by?” I asked.
My aunt sighed.
After the death of my cousin, I began to volunteer with children who have various mental and physical handicaps. A little while ago I opened a GoFundMe campaign called ‘Batsheva’s Memory’, whose goal is to raise money for children with disabilities. And just recently I returned from a trek up Mount Kilimanjaro, the highest mountain in Africa, with a group of 16 other people. Our goal was to raise funds and awareness for children with disabilities. We raised a sum of about $200,000; I would like my own campaign, ‘Batsheva’s Memory’, to do the same.
I want to keep my cousin’s memory alive.
My aunt believes that the baby came down to fulfill its destiny and then returned to Heaven in peace. “It was a kapara,” she told me. “She’s done her atonement.”
“You mean she’s made up for some sin,” I said.
“Some little sin,” my aunt said, “in some other life.
“And now she’s perfect.”