Losing a Child to Tay-Sachs Tests a Mother’s Faith
In fall 2018, I gave birth to a beautiful baby girl whom my husband, Matt, and I named Havi Lev, the Hebrew words for “life” and “heart.” Fifteen months later, on a cold, snowy December day, we learned that Havi had Tay-Sachs disease. A fatal error had been made by Matt’s physician when he ordered the wrong carrier status test before we decided to have children.
Havi’s Tay-Sachs diagnosis tested my faith, the faith I had built as a child in a warm, loving home surrounded by a strong Jewish community in the suburbs of Philadelphia. Matt, a physician-scientist, and I had been screened for Tay-Sachs before Havi was even an idea. We had learned about the devastating neurodegenerative disease as young children; it was part of our education as Jews. We knew that Tay-Sachs had been historically prominent among Ashkenazi Jews, but that the success of prenatal screening for the faulty gene that causes it had reduced the number of cases to just a handful per year in the United States.
Matt and I had been relieved when Matt’s results showed that he was not a carrier. I am a carrier, but both parents need to be one for a child to be affected. Our future children, we were led to believe, would be safe from Tay-Sachs.
After Havi’s diagnosis, against all advice and norms to “move on,” or to acquiesce to people’s comments about “silver linings” and “God’s plans,” we decided to celebrate what we knew would be her short life and to show her as much of the world as possible.
We embarked on a three-week journey along the California coast, which we called our “Havimoon,” and then returned to our home in Boston, where we were surrounded by a core group of friends and family members who relocated to be in Havi’s orbit. We transformed Friday nights into birthday parties—“Shabbirthdays”—to replace all those that Havi would never have. We celebrated 57 Shabbirthdays, each one with a warm challah, a special outfit for Havi, Shabbat candles and, most importantly, family and friends who held Havi so that she only knew love and comfort.
By her 29th Shabbirthday, Havi had a beautiful younger sister named Kaia, born on June 30, 2020, who grew our family and expanded our hearts. Without ever exchanging a word, Havi and Kaia knew and felt the power of sisterhood.
The Jewish holidays the year after Havi’s diagnosis were especially difficult. “How could this happen?” played on repeat in my head. It is hard to find comfort or belief in the divine when your oldest child is diagnosed with a devastating fatal illness.
When Yom Kippur arrived in September 2020, we bristled at the idea of a day of self-introspection in synagogue away from our oldest daughter. We had watched her steadily lose everything—movement, vision and hearing—and knew her days were numbered. As we listened closely for any direction from Havi, we felt the tug to be in nature and by the sea, the place where she seemed most at peace.
While Kaia stayed home with our nanny, Matt and I grabbed a blanket, tossed Havi’s stroller in the car and headed for World’s End, a picturesque land preserve along the Atlantic in Hingham, Mass. A 24-hour fast didn’t feel right when our meals with Havi were numbered, so we decided to honor the holiday in a different way. Our picnic lunch included a few slices of cold pizza, dark-chocolate peanut butter cups and an apple. And for Havi, who could only swallow liquids at this point, a homemade smoothie with extra blueberries, her favorite, and a scoop of Madagascar vanilla ice cream.
When we arrived, we headed for the carriage pathways that traverse the rolling hills and rocky shorelines of World’s End. We found a spot overlooking Hingham Bay, with a view of the Boston skyline and, beyond that, the ocean. Matt lifted Havi out of the stroller and laid her down to get a good look at the magnificent fall foliage around us. Matt and I each held a pizza slice in one hand and one of Havi’s perfect little hands in the other. She smiled as she tracked the afternoon light playing on the orange, red and yellow leaves and breathed in the blended scent of ocean air and red cedar trees.
And when it began to rain, she’d scrunch up her nose and close her eyes each time a raindrop landed on her cheek. Just as the ominous name World’s End does not spoil its pristine beauty, Havi’s dazzling spirit was not suppressed by the ugliness of Tay-Sachs.
The following Yom Kippur, the first after Havi’s death on January 20, 2021, I wrote to her in a journal, which I continue to do every night.
It rained again this Yom Kippur. Except you are not here and we are not at World’s End in Hingham. I participated in a Zoom Yom Kippur. Rabbi Shelly led a beautiful service. So many of the prayers and readings resonate differently now. “Please let your soul be bound up with the living in the continuum of life, and may your rest be honorable. Grant you abundant joy in my presence and sweet pleasures at your right hand for eternity.” I love imagining sweet pleasures in your adorable and precious hand. I’m thinking maybe lots of blueberries. I wish I could go back to last year’s today because I’d get to tuck you in. I love you beyond and more.
As I anticipate Yom Kippur this year, nearly two years since Havi’s death, the question of forgiveness is swirling around my mind. Do I forgive Matt’s physician, who ordered the wrong confirmatory Tay-Sachs test, resulting in a misreported negative carrier status? I wonder what difference it would make in my life if I forgive him—or if I don’t. And then I consider Havi’s bright hazel-green eyes with all their wonder, awe and warmth, and I imagine her telling me:
“It’s O.K. to forgive him, Mom. I’m still with you.”
As I hear that imagined message in Havi’s voice, a voice I never heard because of that cruel disease, I want to embrace the lens through which I believe she saw the world. And the one through which I know Kaia sees it every day. The one where deep compassion can emerge from the deepest hurt. This is faith.
So, to the ordering physician, I say: You are forgiven. I hope with this forgiveness, you can continue to make the world a better place, in Havi’s name.
Myra Sack is a senior adviser at SquashBusters Inc. She is a certified Compassionate Bereavement Care facilitator and is writing a memoir about her daughter Havi. She lives in Jamaica Plain, Mass., with her family.