Title: Medicine, Miracles, and Mindsets
By Elie and Chaya Rochel Estrin
In the canon of Jewish publishing, there are many books written about children or other family members with significant health issues. These stories often focus on emunah and resiliency in the face of numerous challenges regardless of the outcome. It is inspiring to read how these individuals and their family members remain steadfast in their faith while seeing how often the events are truly guided through Hashem’s hashgacha. However, as a physician, I often read these stories wishing the medical history was more precise and there were more details provided about the physician-patient relationship. Not surprisingly, most of the time, the authors do not have the medical background or understanding to convey the complex medical issues that are present. This is especially true with complex congenital heart disease given the anatomical and physiological complexities that require years of training to understand.
Of Medicine, Miracles, and Mindsets, is a first-person account of Rabbi Elie and Chaya Rochel Estrin and their child Yossi, written mostly from Rabbi Elie’s perspective. The couple were Chabad shluchim in Seattle, Washington and had been successful raising their already 5-child family and providing a positive Jewish experience and education for many of the students at University of Washington in Seattle. With the 6th child on the way, everything seemed to be going as normal, until a 3rd trimester ultrasound and subsequent higher level obstetric scan showed multiple concerning congenital anomalies, specifically one of the most severe types of congenital heart defects, and concern for a gastrointestinal abnormality.
Consultation with a fetal cardiologist was next, and a diagnosis of heterotaxy with a univentricular heart consisting of a right dominant unbalanced AV canal, pulmonary atresia, and total anomalous pulmonary venous connection (TAPVC) was made. For the layperson, what this means is that he was missing all of the major connections that would allow his blood to be oxygenated in the lungs as well as a major portion of his heart (the left ventricle which pumps oxygenated blood to the body). Before birth, there are some unique features of the fetal circulation that allow a baby to live even with such significant heart abnormalities. However, these typically close within the first week or so of life (“the closed opens and the open closes,” Niddah 30b). Surgery soon after birth is necessary to allow for blood flow to the lungs, with multiple other surgeries later in life to “redirect” blood flow, but there is no surgery besides heart transplantation that can recreate a second ventricle.
The second major concern for Nissi was concern for a gastrointestinal abnormality called esophageal atresia. This is where the esophagus does not connect to the stomach. The combination of a severe heart abnormality and gastrointestinal abnormality often leads to a very poor prognosis. In the medical literature, this constellation of findings would make a survival estimate of much less than 30%, probably closer to 10-15% in the first year of life. There would be multiple heart and GI surgeries, with long hospitalizations, and this does not include all the other complications that may develop. There are many centers that would recommend palliative care in situations where the survival is that low, since suffering of the child as well as resource allocation (in some cases) have to be considered as part of the ethics of medicine. Living in Washington State, it is likely that many medical providers were biased to palliative care, given the “death with dignity” movement that is prevalent there.
When counseling families regarding complex medical issues, especially those during fetal life, the medical team needs to not only communicate the findings effectively, but also understand the background, beliefs, and ethics of the family to recommend the best possible treatment. The team also needs to have a clear plan for any future physicians that may be involved in the care. Unfortunately for the Estrin family, there were multiple communication breakdowns from the very beginning as well as a clear disregard of the family’s wishes by a few select physicians, in particular “Dr. Ralph,” a neonatologist at the delivery hospital.
Once Nissi was born, the team should have confirmed the prenatal findings and adjusted the plan with any new information while considering both the needs and wishes of the patient and family. However, the family was pushed towards a palliative care approach by the initial hospital. The Estrins describe the deeply troubling difficulties they had with the initial medical team getting the appropriate postnatal testing, with “Dr. Ralph” claiming Seattle Children’s Hospital would not offer surgical care. Nissi was discharged home in what the family initially thought was “stable condition.” After a phone call with the cardiology team at Seattle Children’s the next morning and immediate evaluation less than an hour later, Nissi was admitted, and surgery was performed that very evening. Over the next chapters, the parents recount all the ups and downs of Nissi’s medical care, surgeries, hospitalizations, follow ups, and subsequent emergencies at home. After moving to Florida, they describe the struggles of coordinating the local medical care with future surgeries done in Boston.
Aside from the parents’ impressive knowledge of the cardiac abnormalities, physiology, and surgical treatment, what I found most impressive and unique was the focus on not just telling the story but conveying thoughtful messages and learning opportunities for all those who read the book. They incorporate these messages as the story unfolds, but also add additional sections at the end with thoughts for medical professionals, families that may be going through similar issues, and friends of families with real examples of what is helpful and what is not. I believe that this aspect of the book is what sets it apart from the others, and what makes it a must-read for essentially anyone.
Personally, I think of a few things my Rebbe taught me while I was in my training. First, the word “choleh,” sick, has the same shoresh/etymological root as “chol” meaning both secular and sand. Just as sand which has individual particles that do not connect with one another, chol or secular means disconnected from ruchniyus/spirituality. When someone is sick, he/she and the family become disconnected, whether from their own spiritual needs or from friends and communities. Bikur cholim is the mitzvah of trying to help them reconnect. However, there are times when there are no medical interventions that can help. There is a peirush of the Sulam on a Zohar in parshas Ha’azinu that discusses this task of the physician. Physical treatment may not always be possible, but spiritual healing can always be provided. Through reading about the Estrins experiences and by heeding their experiential advice, physicians and lay people can hopefully learn how to provide the support necessary for every patient and family, and we can merit a true refuah sheleima for Klal Yisrael.