What does a G‑d-fearing Jew do when facing a dire health crisis? He seeks medical advice, he prays for miracles, and he applies the mindset of placing his trust in his Maker.
Upon hearing that the life of their unborn son was unviable, Rabbi Elie and Chaya Rochel Estrin did just that. The authors of Of Medicine, Miracles and Mindsets (2021), a candid account of their harrowing experiences, the saga of the Estrins is one of pain and perseverance, trust and triumph that cannot fail to uplift and inspire.
Life was good for the Estrins; in fact, it was wonderful. With a strong marriage and five healthy children, Elie and Chaya Rochel were leading fulfilling lives as busy and successful Chabad-Lubavitch shluchim (“emissaries”) at the University of Washington in Seattle; Elie additionally served as a chaplain in the U.S. Air Force Reserves.
And there was another baby on the way! The Estrins looked forward to a new addition to their family with excitement and gratitude.
Their world turned upside-down when a 30-week sonogram in December, 2015, did not go as expected. While Chaya Rochel had envisioned hearing a chatty technician talk about the baby’s “cute little legs” and “adorable nose,” the sonographer was unusually sober and seemed focused on checking the baby’s heart.
Chaya Rochel felt a chill of foreboding. It had been a normal pregnancy so far; with only nine weeks left until the birth, the chance that anything had gone askew was unthinkable.
But it gave Chaya Rochel plenty to think about …
Pulling Themselves Together
Despite her misgivings, it was “business as usual.” Chaya Rochel made her way to the University campus for the student Chanukah program, but not without first apprising Elie of her apprehension.
Soon enough, they were called by Chaya Rochel’s midwife, who confirmed that there was indeed a great deal wrong. The Estrin baby was suffering from severe and complex heart defects.
“Is the baby viable?” Elie held his breath.
The midwife answered, “No, I don’t think so…”
Elie pulled himself together; he was a Chabad emissary, and the students were about to arrive. Without saying anything, he conducted the party with his usual exuberance. He “didn’t have time to be depressed.”
But after the guests had left, he shared the ominous news with Chaya Rochel, who describes her initial response as “sad, heartbroken and scared.”
Even so, Elie and Chaya Rochel were not prepared to accept they were facing a fatal diagnosis.
Elie: “We felt we were going into battle. We didn’t know if we were going to win or lose, but we were going to put up a good fight.”
Fighting spirit or not, the Estrins soon learned that their “battle” for their baby’s life was to be even more difficult than they’d thought. A week after the first tentative diagnosis, a second set of tests at a major medical center in Seattle confirmed that not only did the baby have severe cardiac defects (he had half a heart, no pulmonary valve, and pulmonary veins going into the liver instead of the heart), but he also seemed to have major issues with his trachea and esophagus, and did not appear to have a stomach.
If the Estrins had any thoughts that medical intervention could correct these deficiencies, they were immediately disabused of that notion by the medical team assigned to their case. The doctor they had approached, whom they call “Dr. Ralph,” was adamant that with the baby’s combination of cardiologic and gastroenterological issues, there was no way he could survive surgery. If he did, he would be a vegetable and die soon afterwards.
What should be their next step?
Making a Plan
To the Estrins, as Chassidim, there was only one thing to do.
Elie: “The realization that we were Chassidic Jews, schooled for years to place our faith and trust in G‑d, kicked in almost automatically. We knew we had to move on from our initial pain and create a plan to fit our situation. With all the stories and examples and teachings we’d learned in our lives, we knew at once what it had to be…
Tracht gut vet zein gut (“Think good and it will be good”) is the core of Chabad philosophy. With a positive mindset—and doing positive steps to actualize it—we would be making ourselves conduits to receive G‑d’s beneficence.
“Whatever the dangers that lay ahead, we had our marching orders,” said Elie. “We were going to think good … and (if G‑d thought fit) it would be good!”
Spiritual Boot Camp
To some, their outlook was overly optimistic, even delusional, but the Estrins were sure they were on track.
Chaya Rochel: “We were leading two parallel lives, but that was not a contradiction. Although we didn’t blind ourselves to the doctors’ prognosis, we lived with a genuine awareness that G‑d could perform a miracle, and we prepared ourselves for that eventuality. We took on extra mitzvot in honor of the baby, and my husband went to the Ohel (resting place) of the Rebbe to pray. We also checked our mezuzahs, and discovered that one contained a flaw in the word “heart” and another in “your son.” We had that mezuzah corrected and upgraded several others.”
At the same time, the couple knew that the Rebbe had been asked tens of thousands of questions about medical crises. In time, they discovered an answer that they could apply to themselves.
The Rebbe maintained that medical imaging is not always correct.
For the Estrins, this confirmed what they felt all along: The possibility that further tests could provide a different approach gave them comfort and reinforced their hopes.
Ups and Downs
Of course, it wasn’t easy. Elie and Chaya Rochel admit to having their “ups” and “downs,” and not always at the same time. While Chaya Rochel never doubted that G‑d was “there” for them, there were moments when she found it hard to see the silver lining in the cloud.
As the weeks passed, however, she arrived at a more profound understanding that enabled her to recognize that there is light even in the greatest darkness.
Chaya Rochel: “Life—the fusion of body and soul—is intrinsically valuable. Our baby would have a purpose whether he lived for only a few minutes, a few hours or 120 years. Whatever the outcome, my pregnancy would not be in vain.”
Chaya Rochel decided to name her baby “Nesanel” (“G‑d gives”) before he was born. “I wanted a name that would express the feelings I wanted to have—that this child, too, was given to us by G‑d.”
A Life Plan
While the Estrins did not expect Dr. Ralph and the hospital staff to share their optimism, they were horrified by their brutal response. Repeatedly, they urged the couple to abandon their hopes. Even as Chaya Rochel went into labor on Feb. 8, 2016, they continued to pressure the Estrins to call the chevra kadisha (“burial society”) to make the necessary funeral preparations in advance.
Elie: “They were planning for his death. We were planning for his life.”
Elie played Chassidic niggunim (“tunes”) on his iPad as he waited for the baby to be born.
With the pensive melody “Shamil’s song” in the background—a niggun that represents the entry of the soul into the body—Nesanel Estrin came into the world.
And he came out crying. He was very much alive!
The baby was suctioned, X-rayed and returned to his parents’ arms with the advice that they should enjoy him for the next few hours because he would not live past the end of the day.
Chaya Rochel: “Our baby looked so perfect! He was breathing on his own, sucking a pacifier and drinking sugar water. There had to be some mistake!”
The nurses looked at Chaya Rochel with pity.
Meanwhile, Nesanel held on … one hour and then the next. As sunset drew near, Elie says the baby looked “phenomenal, considering what we’d been told would happen.” Elie adds with a smile that although he wasn’t yet a day old, their tiny baby was busy proving to the medical world that “doctors are not G‑d.”
And so began Nesanel’s extraordinary life.
Moving Forward
Nissi (“my miracle,” as they nicknamed the baby), had already beaten the odds, but in spite of this, Dr. Ralph stood firm that surgery was not an option. He refused to bring in other doctors for their opinions and urged the Estrins to place the baby in hospice care and to stand by until Nissi’s life came to a “merciful” end.
Even Boston Pediatric Hospital—one of the leading pediatric hospitals in the world—told them it would be “futile” to operate on Nissi.
The word “futile” still grates on Elie. The notion that trying to save a baby’s life was futile sounded “barbaric.”
Even so, because the couple was exhausted, confused and traumatized, they spent the next few days in limbo. But they remained firm in their resolve: Even if there was no one else advocating for Nissi, they would continue to do it themselves.
After leaving the hospital where their son had been born, a desperate Elie called the Children’s Hospital in Seattle and described their dilemma to the receptionist. Soon enough, the cardiologist who had given Nissi his original diagnosis called back.
The doctor was baffled. She’d been told that the Estrins were opposed to invasive care and were waiting for “nature” to take its course. What were they asking for now?
Ellie was naturally taken aback; he’d been told by Dr. Ralph that Seattle Children’s Hospital was opposed to accepting Nissi as a patient due to the complexity of his case!
The cardiologist interjected through the confusion, saying, “Seattle Children's would NEVER turn down a child. How quickly can you get here?"
To Elie, these two lines “were among the most beautiful things I’ve ever heard a person say.”
They were an embrace from G‑d.
The Road Home
They’d reached a turning point. The doctors at Seattle Children’s made clear that the tests had not been read correctly. The team had completely misdiagnosed the GI issues, thinking them far more severe than they were. And this meant that the urgently needed heart surgery was very much an option.
The Estrins were introduced to Dr. McMullen, a leading pediatric cardiac surgeon, who told them that whenever there’s a chance to save a baby’s life, he never hesitates to try.
Elie wanted to hug him.
Dr. McMullen performed a five-hour open-heart surgery on Nissi. His vitals stabilized, but when he was not even a month old he went into cardiac arrest. He was given 50 minutes of CPR as they worked to put him on life support, but neither the Estrins nor the CICU team were ready to give up.
Over the next few days, Nissi had one medical crisis after another, but each time he bounced back. Seeing the baby overcome even the unsurmountable, Dr. McMullen quipped, “This kid is indestructible!”
Miracle after miracle …
Five months later, on June 14th, Nissi was discharged from the hospital, his one-ventricle heart stable enough for real life. It had been a rocky road and their journey was far from over, but thank G‑d, he’d come home!
A New Life
A new baby, a new life. Apart from the usual difficulties of looking after an infant, feeding tubes, therapies and constant vigilance were the new “normal” in the Estrin home, especially in Nissi’s first year when pediatric cardiac patients are at most risk.
Nevertheless, surrounded by his devoted parents and siblings, Nissi grew and thrived. On his first birthday on Feb. 8, 2017, Chaya Rochel’s posting on Facebook says it all:
“It is Nissi’s first birthday, one which we were told countless times we would not celebrate. Yet here I am holding a warm, smiling and happy baby, whose heart may be broken and patched, but it is beating strong. He has tightened our bond of love and given so much to our family. … I am thankful for the gift of life, for him and for the blessings he has brought into our home.”
This isn’t to say that Nissi’s challenges are over. There remains much work ahead for his family and caregivers. The Estrins now live in Florida because they feel that Nissi and the rest of the family benefit from the support system the community provides.
Nissi has just celebrated his sixth birthday, and his attainments defy all expectations. The cardiac arrest he suffered as an infant caused cerebral palsy; Nissi is still unable to walk without his walker and goes to therapy three days a week. But he is intelligent and perceptive, and is able to speak and understand beyond his years. At check-ups, his doctors continuously express their amazement when they see how well he’s progressing.
Elie: “He’s an incredibly happy child. I feel so grateful for the gift that we’ve been given.”
Chaya Rochel reiterates that he is a wonderfully funny, social and lively child, whose constant smile brings joy and hope to everyone who sees him, despite the hardships he suffers on a daily basis. “In his few short years, he has done so much good; he has brought people to believe in the power of prayer, in miracles and in something bigger than ourselves. He is truly a ‘gift from G‑d’ and ‘a miracle.’ We considered ourselves truly blessed.”
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