Rabbi Elie & Chaya Estrin: A Chabad Couple’s Fight To Save Their Baby

00:03 Speaker 1 I'm Gary Wolk, and this is Lamplighters, stories from Chabad emissaries on the Jewish frontier. Life as a Chabad emissary is unpredictable, joyous, tragic, and occasionally dangerous. Chabad has become a ubiquitous presence in every corner of the world. But behind every Chabad house are regular people striving to transcend their circumstances, and a community that relies on and supports their Chabad leaders. These are their stories. Eli Estren is a Chabad rabbi and Air Force Reserve chaplain. In late 2015, Estren and his wife, Chaya Rachel, had five healthy children, but their oldest had been born prematurely and weighed just one pound four ounces at birth. He grew and thrived, but for each subsequent pregnancy, the Estrens consulted with high-risk obstetricians.

01:11 Speaker 2 My pregnancies were not calm, relaxing, enjoyable.

01:15 Speaker 3 Every step of the pregnancy is looked at with doubt and with concern in a heavy way.

01:22 Speaker 1 So in 2016, when Chaya Estren was pregnant with her sixth child, she decided to entrust the care of her baby to a midwife. By late 2016...

01:32 Speaker 2 Everything seemed to be progressing normally. There wasn't anything that seemed to be an issue.

01:37 Speaker 1 The Estrens were serving at that time in Seattle as Chabad emissaries to the University of Washington. In December of 2016, as Hanukkah approached, Chaya had her 30-week checkup, but the ultrasound technician's demeanor worried her.

01:53 Speaker 2 She wasn't the usual chatty, happy-go-lucky that they tend to be when everything looks great, where they're like, "Oh, look, there's the feet. Oh, look, there's the hands. Oh, look. Look how cute his nose is." It was very quiet, and she kept going over the heart, and then she just left the room, said, "I'm gonna go speak to the doctor," and then it was, "The doctor will call you."

02:15 Speaker 1 As Chaya made her way back to the University of Washington campus for a Hanukkah event they were running, she called her husband.

02:23 Speaker 3 She said, "Eli, there's something wrong with the baby's heart."

02:25 Speaker 1 So Eli called the midwife.

02:27 Speaker 3 The midwife did not want to tell me real information. She really wanted to speak to my wife, but I said, "Listen, you're speaking to her husband. She's gonna be here soon, and I know that there's something wrong with the heart." And she said, "That's correct. There's some severe heart defects there that are very concerning." So I said, "Is this baby viable?" And she said, "No, I don't think so."

02:48 Speaker 1 Chaya arrived for the Hanukkah event. At first, they didn't talk about the ultrasound.

02:53 Speaker 3 As a rabbi about to run a program for Hanukkah, I don't have time to be depressed or upset. I just, there's no time for it.

03:00 Speaker 1 After the party, Eli told his wife what the midwife had told him.

03:04 Speaker 2 It was sad, hard, heartbreaking, scary. At the same time, I don't think we were ready to accept that this was gonna be a fatal diagnosis.

03:18 Speaker 3 There was a feeling of almost like going into battle. We don't know whether we're going to win or lose this battle, but that's irrelevant.

03:26 Speaker 1 The Estrens looked for spiritual ammunition to use in that battle.

03:30 Speaker 2 We increased our prayer, gave charity. My husband went to visit the rabbi's grave site. We checked our mezuzahs.

03:37 Speaker 1 The Estrens learned that one of their mezuzahs had errors on the word heart, and also on the words your son. They had that one fixed and upgraded their other mezuzahs. The Estrens also knew that the correct mindset would give their baby a fighting chance.

03:54 Speaker 3 Think good creates a path for there to be goodness. And so therefore, we wanted to open up a path for goodness to be able to reach us.

04:07 Speaker 1 A week after the Hanukkah event, there was another ultrasound. A cardiologist at University of Washington Medical Center told the Estrens that their baby's heart had only one chamber. One ultrasound showed that the baby had serious issues with its trachea and esophagus. The baby seemed to have no stomach. A doctor was assigned to manage the Estrens' case. They refer to him now only as Dr. Ralph.

04:35 Speaker 3 So Dr. Ralph and the high-risk OB that we were involved with were recommending and pushing for let nature take its course, which basically meant to hold the baby until the baby died, and that was it.

04:46 Speaker 2 According to what they said, there was no real surgical option for him because of the combination of the cardiac and the GI.

04:53 Speaker 3 Dr. Ralph basically said, "You know, the chances of survival are virtually nil, and if even if he does get into surgery, he will die on the operating table. And if he somehow does not, he will be a vegetable till he dies soon afterwards."

05:06 Speaker 1 But the Estrens continued to look for ways to think good, and here's where that led them.

05:12 Speaker 3 As long as a body and soul are together, that's of infinite value because God put them together. And so protecting that child means to allow this child to express their godly purpose in this world for as long as that needs to be. For four hours, for six hours, for twelve hours, or for a day, for a week, or God willing, many, many years. That was the approach that we wanted to take.

05:43 Speaker 1 Eli and Chaya Estren knew that the Lubavitcher Rebbe had answered tens of thousands of letters with requests for blessings and medical advice. In looking over some of the Rebbe's responses, they discovered one crucial bit of guidance: sometimes medical imaging can be wrong. The Estrins applied that to their own medical challenge.

06:06 Speaker 2 Sometimes scans are not the same prenatally and postnatally. If they're different, we're gonna reassess the situation and get him the care that can hopefully help him.

06:20 Speaker 1 On February 8th, 2016, the Estrins awaited the birth of their baby in a University of Washington Medical Center delivery room. They maintained a positive outlook about their baby's chances, but doctors and hospital staffers didn't share that view.

06:36 Speaker 2 They were already asking us if we had contacted the Chevra Kadisha, and they wanted us to have everything almost like a death plan, you know? And my husband definitely at that point was like, "He's not even born yet. You know, this is not what we're all about. Jewish people celebrate life."

06:51 Speaker 1 When Chaya went into labor, Eli began to play niggunim, Hasidic melodies, on his iPad. At 12:47 PM, the Estrins' baby boy emerged into the world.

07:10 Speaker 3 The tune that was playing was Shlomo Carlebach. The tune represents the soul coming into the body. That was the song that was playing when he was born. But as soon as he was born, he began to cry. They suctioned him, they took some X-rays, and they brought the baby back over to me. And the doctor said, "This baby will not survive to see sunset tonight."

07:49 Speaker 2 And you're just looking at him and seeing, like, he looks so perfect. He looks like a normal baby. Are you sure that his insides are so messed up the way they're telling us they are? And I remember saying that to the doctor as well, like, "He looks like a normal baby. Are you sure?"

08:05 Speaker 1 I'd think that there'd be someone on the medical staff at that point recommending surgery. Was that happening at that time?

08:12 Speaker 3 That was not happening, and it was quite surprising to us. We were actually asking for a cardiologist, and nobody was coming, and we couldn't figure out why.

08:20 Speaker 2 There should have been a team of doctors, and they should have been making a group decision about what to do and weighing in different opinions. But really, there was one person who took over the case.

08:33 Speaker 1 That was Dr. Ralph.

08:35 Speaker 3 Dr. Ralph wasn't allowing any other medical staff to get involved, and he was trying to mercifully end this life as fast as possible. I remember the words going through my head, "Come on, kid. Show this doctor that he's not God. At least make it past sunset."

08:54 Speaker 1 And how was he looking at sunset?

08:57 Speaker 3 At sunset, he actually was looking great. He wasn't in any pain. He was breathing nicely. He was chewing on a pacifier as if he had no care in the world. So, you know, at that point we thought, "Okay, maybe they've made a mistake here."

09:09 Speaker 1 Before the baby was born, Chaya Estrin had decided to name her son Nessonel, which is Hebrew for God gives.

09:18 Speaker 3 And then once he was born, we nicknamed him Nissi, which means my miracle, and that was really a request more than anything else.

09:27 Speaker 1 Nissi was placed in the newborn intensive care unit. Over the next few days, he ate sugar water and formula, but even that didn't change the medical team's plan not to operate.

09:39 Speaker 3 We kept on asking, "Why is it not?" We weren't getting straight answers. And I kept on telling the nurses, "He looks phenomenal, and so therefore, there's gotta be some way to be able to help him out." You know, you just got these kinda like little smiles. "We understand. You know, it's, it's tough."

09:56 Speaker 1 The Estrins reached out to Boston Children's Hospital, home of one of the top pediatric cardiac programs in the country, for another diagnosis. But doctors there agreed with the original assessment.

10:08 Speaker 3 They used the word futile in that conversation, and so that word still grates at me. And the doctors were quite adamant that there was no way for this baby to be able to survive, and they tried to push us into hospice care. Um, you know, "Have you spoken to the Jewish Burial Society?" Those questions again and again and again and again, it seemed barbaric.

10:33 Speaker 1 But the Estrins continued on with their plan to save Nissi. A desperate phone call was the turning point. Eli called Seattle Children's Hospital and described the situation to a cardiologist. She just happened to be the doctor who had originally diagnosed Nissi.

10:50 Speaker 3 And she sounded very, very confused, and she said, "We were told that you refused invasive care." I said, "That's ridiculous. We were told that Seattle Children's refused his case." And she says, "Seattle Children's would never turn down a child. How quickly can you get here?" And that is one of the most beautiful two sentences I have ever heard in my life.

11:11 Speaker 1 The Estrins arrived at Children's Hospital as quickly as they could. There they learned that the original diagnoses had not told the entire story.

11:20 Speaker 3 They misdiagnosed the situation, the GI situation in particular, and they didn't read it properly.

11:27 Speaker 1 And then they met a surgeon willing to operate and even share the Estrins' positive outlook.

11:33 Speaker 3 Dr. McMullan was phenomenal. His attitude was, "If there's a chance that a child can survive, I'm gonna do whatever I can for him." And I was ready to hug him when I heard that, because that's really what we had been arguing.

11:47 Speaker 2 We felt like we had a team player, that someone was on our side finally.

11:50 Speaker 1 In early March 2016, Nissi Estrin, not even a month old, had a five-hour open heart surgery. In the ICU, he began to eat normally and his vital signs stabilized. But on March 4th, he went into cardiac arrest. Doctors administered CPR for 50 minutes, after which Nissy was put on a life support device. Over the following days, Nissy had his appendix removed, a liver issue corrected, and another risky open-heart surgery, and he bounced back every time. How does Eli Estrin account for Nissy's resilience?

12:29 Speaker 3 I don't know. I, I don't know, and I don't think anybody, uh, really knows. Dr. McMullan made the comment at one time, he goes, "That kid's indestructible."

12:38 Speaker 1 Nissy's heart, or half a heart, was completely repaired. On June 14th, the Estrins returned home, more than four months after Nissy was born.

12:50 Speaker 3 We were thrilled. We were also utterly exhausted.

12:55 Speaker 1 Aside from the usual difficulties with the care of an infant, there were feeding tubes to deal with, various therapies, and constant vigilance.

13:04 Speaker 3 We'd been told that for these cardiac kids, the first year is the most dangerous year.

13:09 Speaker 1 But Nissy grew and thrived over the following months. On February 8th, 2017, Chaya Rachel Estrin posted a message on Facebook.

13:20 Speaker 2 It's Nissy's birthday, his first, one we were told countless times, drilled into our hearts so we couldn't forget, that we wouldn't celebrate. Yet here I sit, holding a breathing, smiling, warm, and happy baby. His heart may be broken and patched, but it's beating strong. His heart and being have tightened our family bond, making us all love deeper and stronger. He has brought us a raw joy, a happiness that spreads from his little smile across the room. I feel so blessed and grateful for his gift of life, the gift of him, and the gift he's given our family.

13:55 Speaker 1 Eli Estrin's Facebook post that day, addressed to Dear Dr. So-and-so, wasn't nearly as poetic. These days, the Estrins live in Florida with their six children. Nissy's cardiac arrest when he was still an infant caused cerebral palsy, and he's so far been unable to walk. He goes to therapy three days a week, but-

14:20 Speaker 2 Every time we go to the cardiologist, he is amazed by how well he's doing. He's doing great. He speaks. He understands. He's incredibly happy and funny and social. He speaks in way more than full sentences. He sings songs.

14:44 Speaker 1 That's Nissy joyfully singing the blessings over the menorah with his father during Hanukkah last year. He's surrounded by family and grinning ear to ear.

14:54 Speaker 3 Yeah, he's, he's an incredibly happy kid. He's really kind of beyond the average happy kid.

15:00 Speaker 1 Nissy Estrin celebrated his fifth birthday this past February. There's a lot more hard work to do for Nissy and his caregivers, but-

15:10 Speaker 3 This is the challenge we've been given, but I'm so appreciative of what we've been given

15:14 Speaker 1 According to Chaya, one of the things the Estrins have been given is a hasid in the truest sense of the word.

15:22 Speaker 2 Everyone he meets is like, his smile is amazing. He relates to people. He connects to people, even on the street, even through a picture. Just seeing how joyful and happy he is despite everything he has been through and has to go through every day, it's so amazing. You know, that's really why I, I feel like it's our duty to share his story so we can give others some hope and some faith that things do work out. He has done so much good in this world. He has caused people to believe in prayer, to believe in miracles, to believe in, you know, something bigger than themselves.

16:05 Speaker 1 The Estrins' book, Of Medicine, Miracles, and Mindsets, is available for pre-order. It's expected to be in stores this summer. I'm Gary Wolek. Thanks for listening to Lamplighters: Stories from Chabad Emissaries on the Jewish Frontier.