There was no way my micro-preemie could survive

When I went for a routine 20-week obstetric ultrasound on a Friday afternoon, my overriding concern was that I had to hurry home to get ready for Shabbos.

But as my mazel would have it, the technician was taking a maddeningly long time.

“Do you think you can do this a little faster?” I asked, in what I hoped was a polite voice.

She gave me a funny look. “I think you should speak to the doctor,” she said evasively.

When the doctor looked at the scans, his brows furrowed. “I’m concerned about a couple of things,” he said. “One, I see some markers of Down syndrome. And two, you have placenta accreta, which means that the pregnancy has invaded the surrounding tissue. This condition is rare, but the risk increases with each caesarean delivery, and you’ve had five.

“Accreta,” he added soberly, “has a mortality rate of 7 percent. That means seven out of a hundred mothers with this condition die during pregnancy or delivery. At this point in your pregnancy, there’s nothing you can do except hope for the best. But there’s no way you’ll ever have more children after this.”

I came home to find my husband, Tzvi, fast asleep on the couch, and promptly woke him up and burst out crying.

Ever the optimist, Tzvi assured me that I’d be in the 93 percent, not the 7 percent. But still, the prognosis was a lot to handle.

I was having company that night, so I pulled myself together and tried to focus on getting ready for Shabbos. The doctor had assured me that I didn’t need to be on bed rest — yet — so I went about life as usual. First thing Monday morning, I scheduled an appointment with a high-risk specialist for two weeks later.

Two days before my scheduled appointment, I wasn’t feeling well, so I didn’t go to work. That night, I was talking to my sister on the phone about my situation, and she started telling me about a family she knew that had a preemie, and what a cute child that baby turned out to be.

“No one wants a preemie,” I said firmly. “So no thanks to that brachah.”

The next morning, as I was considering whether to take another day off work, I started feeling contractions — four months before my due date. I immediately called my doctor, who advised me to lie down and take it easy.

In the afternoon, I spoke to a friend of mine on the phone and told her what was going on. She offered to send over her teenage daughter to help out.

“Nah,” I said. “My house is too messy.”

Before I went to sleep that night, I memorized the number of the local Hatzalah. I drifted off to sleep with the thought, I’m dying tonight.

At 3 a.m., I awoke and realized that not only was I in labor, but I was experiencing a life-threatening complication.

“Call Hatzalah!” I shouted at Tzvi.

He picked up his cell phone, but it was dead. He grabbed my cell phone, but it was dead, too. As he dashed down the stairs to get the landline, I screamed Hatzalah’s number after him. By a miracle, none of the kids woke up.

Within minutes, my house was swarming with Hatzalah members. Having no experience with my condition, they did not know what to do for me, and they raced me to the nearest hospital. But that hospital refused to take me.

“We can’t handle a case like this,” they said.

Instead, Hatzalah brought me to a trauma center in a small town about half an hour away.

By the time the ambulance arrived, a team of doctors was ready and waiting for me. They gave me a blood transfusion on the spot and managed to stabilize me, but they were not equipped to handle my obstetric condition, so Tzvi worked desperately to arrange transport by helicopter to a top Manhattan hospital. But my condition was too critical for me to be transported; there was a real chance I wouldn’t survive the ride.

As the trauma doctors were working feverishly to save my life, a neonatologist entered my room. “We don’t deal with babies born before 23 weeks of gestation,” she said flatly. “These babies are not viable. And you’re at 22 weeks plus five days.”

She then proceeded to read me a long list of statistics regarding the prognosis of babies born at 23 weeks. “Even if you make it to 23 weeks,” she intoned, “your baby is likely to have cerebral palsy or other severe disabilities.”

Floating as I was between life and death, I couldn’t bear to listen to her; I knew there was no chance my baby was going to survive, and frankly, I was in no state to think about anything. I begged her to stop reading, but she refused.

“I’m required to read this to you,” she insisted.

And she continued going through three pages detailing the complications of what she called “micro-preemies.”

By the time she was finished, I was bawling. And it wasn’t just me — the doctors who were in the room attending to me were weeping, too, upon hearing the gruesome descriptions of what a micro-preemie like my baby was likely to endure. If he survived.

At some point during the day, a nurse from the NICU came into my room, having been sent by a friend of mine who had once worked in that hospital and had heard about my condition.

“Just get to 23 weeks,” she urged me. “Whatever you have to do, you have to make it to 23 weeks.”

But 23 weeks seemed like an eternity away. Would I even make it through the day?

The hospital wouldn’t let me eat anything, in case I needed emergency surgery, but fasting all day just exacerbated the labor. At some point in the late afternoon, right after a new shift of doctors and nurses had begun, I realized that something was very wrong, and I started yelling like a madwoman.

“I’m dying!” I screamed.

Within seconds, all the doctors and nurses on the floor were screaming, too, as they raced me to the operating room.

“Tell the kids I love them!” I shouted to Tzvi, who was chalk white. “And tell the whole world to daven for me!”

The operating room was teeming with dozens of doctors and nurses. In addition to a trauma team, an obstetric team, and a NICU team, a team of oncology doctors had been summoned, as they had experience with complex surgeries like the one I required. My pregnancy, it seemed, had grown right through the scar from my previous C-sections, and had spread throughout the abdominal cavity.

Looking around the operating room at all the panicky doctors from the new shift, I did not recognize a single one. I looked upward and whispered, “Hashem, I only have You, You hear?”

I started saying Vidui, but when I got up to yaatznu ra, I couldn’t remember what comes next.

“Shema Yisrael!” I screamed.

Outside the operating room, Tzvi was sitting in a state of shock. To one of the nurses, he said, “I’m not even sure what to pray for at this point.”

He knew there was little hope for the baby to live, and certainly no hope for him to be healthy. His main concern was that I should survive — and that was looking less and less likely.

Amid all that chaos, my baby was born. He weighed over a pound, which is remarkable for a baby born so early. Even more remarkably, he cried as soon as he was born — despite my not having received the steroid injections typically given to mothers at risk of premature delivery to accelerate the development of the baby’s lungs. And he did not have Down syndrome.

Standard protocol, in this hospital and many others, is not to attempt to resuscitate babies born before 23 weeks, but rather to provide only “comfort care” — which basically means leaving them to die. But because my baby was born crying, he did not require resuscitation. Right there in the operating room, while I was under anesthesia, a decision was made by the neonatal team — who were all from the new shift — to try to save him. They immediately intubated him, inserted an IV line, and whisked him to the NICU.

The neonatologist who brought the baby into the NICU told the staff there, “The baby is okay, for now. The mother, I’m not sure.”

In the meantime, the doctors in the operating room hurriedly removed a slew of nonessential internal organs, only to stuff some of them back in when they couldn’t locate the source of the problem. I awoke in the ICU a few hours later, feeling hazy and disoriented, only to be rushed back into surgery a short while later. In all, I lost nine liters of blood, almost twice my own blood volume. But somehow, they managed to keep me alive.

While I was in the ICU, a frum woman who volunteered in the NICU entered my room and showed me a picture of my baby.

“I’m going to show this picture at his bar mitzvah,” I declared.

When this volunteer left the room, she approached a nurse and said, “Someone has to tell this woman that her baby is not making it to bar mitzvah — and if he does, he’ll be severely disabled.”

From Monday through Friday, I remained in the surgical ICU, since I had water in my lungs and a host of other typical ICU trauma issues. Throughout my stay there, one nurse after another came in to give me a hug and tell me, “I can’t tell you how much I prayed for you.”

The entire hospital was praying for me. Back home, the entire community was davening for me as well. Apparently, after Hatzalah had deposited me in the hospital, they had sent out an emergency tefillah alert. One Hatzalah member who had not been at my house when it all started told Tzvi, “I don’t know what went on that night, but I was up all night saying Tehillim.”

After fighting for my life for five days in the ICU, I was finally transferred to the maternity ward. I was in no state to take care of myself, though, as I was in a great deal of pain and unable to move even from the bed to a wheelchair. In the ICU I had been pampered — a nurse was assigned to me alone 24 hours a day. But here, in the maternity ward, the staff wasn’t interested in taking care of me all day. “Go get yourself a drink of water,” they told me, when I said I was thirsty.

Even when I started throwing up, they weren’t interested in tending to me. They handed me a basin to vomit into and left.

In the end, it was the residents in the maternity ward who came to my aid. In this rural hospital, which rarely dealt with complex emergencies like mine, all of the hospital staff who had been involved in trying to save my life felt a personal interest in helping me — as opposed to the nurses in the maternity ward, who saw me as just another new mother, and a demanding one at that. Two residents actually sat outside my room and came in to help me as needed, connecting me to IV and insisting that the nurses give me extra attention.

From the moment I was transferred to maternity, Tzvi kept telling me, “We have a baby in the NICU. Let’s go see him.”

“How can I go?” I protested. “I’m throwing up. I feel horrible. I can’t even walk. Leave me alone!”

I was feeling so sick that I couldn’t think about anyone else, even my own baby. Besides, I didn’t know what to make of this baby. He obviously wasn’t going to survive; the neonatologist had made that abundantly clear.

Tzvi, on the other hand, had grown very attached to the baby in the meantime, and he desperately wanted me to come see him. But there was nothing he could tell me that would convince me to make the trek to the NICU.

At 3 a.m. that first night I was out of ICU, Tzvi entered my room with two sweet young nurses from the NICU. One of them sat down beside me and said, “You have a baby in the NICU, and he needs you. You’re his only mommy.”

“How can I love this baby I’m going to lose?” I asked her sadly.

“I’m going to show you pictures of very tiny babies who did survive,” she said. “I can’t promise you anything, and we’ve never had a baby survive at 22 weeks, but take a look at these photos anyway.”

And she proceeded to show me picture after picture of adorable toddlers — and how they had looked as preemies in this very hospital.

“Come with me,” she said. “Let’s go see your baby.”

She wheeled me to the NICU in a wheelchair and brought me before an incubator.

The baby inside was so tiny that at first I couldn’t even spot him in the incubator. When I finally noticed him, he didn’t even look like a baby. His skin was purple. His eyes were fused shut. His body was skeletal and misshapen. He was only 12 inches long, and in his curled up, fetal position, he looked about the size of my hand. I wasn’t allowed to touch him, and I was afraid to.

But seeing him turned out to be a very cathartic experience. I had made that initial connection with him, and now he was mine. No one had to beg me to come see him again. I kept coming back to look at him through the glass of the incubator.

During those first critical days after I emerged from ICU, the medical staff kept warning me that my baby was experiencing a “honeymoon period,” and within a day everything would probably go downhill. The biggest concern with micro-preemies is brain bleed, which can cause the whole body to fail, and the medical staff were certain that a brain bleed would happen at any moment.

Not all of the NICU staff were as kind as the nurse who had cajoled me into coming to see my baby. Sadly, some of the people who work in the NICU become hardened by the suffering and death they see in these tiny patients. One doctor in particular decided it was his obligation to explain to me just how critical my baby’s condition was.

“I know he’s in critical condition,” I said. “What are you trying to tell me?”

“You don’t understand,” he persisted. “His skin is deteriorating. At this point any germ he encounters can go straight to his bloodstream, and he can die any second.”

“So what are you telling me?” I repeated. “Should I call my husband to come?”

“I’m telling you that your baby can die at any time,” he warned.

But day after day, the baby continued to surprise everyone. It’s practically unheard of for a baby born so prematurely not to have any heart defects, but miraculously, his heart was perfectly formed. And day after day passed with no brain bleed.

“The honeymoon is going to end soon,” the medical staff kept warning me.

But it didn’t. At one point the baby ran a fever and experienced a crisis, but he weathered that crisis and kept thriving.

I, on the other hand, was suffering greatly from the fallout of my two surgeries. After finally being released from the hospital a month after giving birth, I was hospitalized a few days later with a complication that necessitated another surgery. The pain was so excruciating that I could barely breathe; the only relief I had was by screaming, because that temporarily distracted me from feeling the full extent of the agony. I remained in the hospital for another five days and then returned home, full of battle scars but on the road to recovery.

By the time the baby reached his due date, he was breathing on his own. A few weeks later, when he was five months old, he was discharged, after undergoing two eye surgeries to correct a condition called retinopathy of prematurity. When we first brought him home, it was terrifying; in a way this was the hardest time of all. He was plugged in to so many machines and needed so many doctor appointments that there was no way to go about regular life. My two-year-old daughter would put syringes in her doll’s mouth as she played, because that’s what she was seeing at home all the time.

I had a tremendous amount of support from family, friends, the local Bikur Cholim, and a frum organization called WeeCare that provides support for families of preemies. Their help with this transition is what kept me sane and allowed me to get back onto my own two feet. EMDR therapy was also crucial in helping me to process all the trauma I had been through and to make peace with the body that had almost failed me and was no longer whole and vibrant.

The baby came home still attached to a nasogastric tube for feeding, but once he came home we were able to wean him off that within a couple of weeks, and later we weaned him off the apnea monitor as well. Then, finally, we were able to give him a bris and a name: Boruch.

For many months, I shlepped Boruch to endless therapy appointments, always with the crushing worry of Will he be normal? But he surprised everyone by developing at a pace similar to that of a typical newborn, albeit proportionally late.

As for me, a new normal has emerged, one in which I’m continuously aware that death is real and everyone’s time eventually runs out, often without warning. But this only sharpens my appreciation for life and helps me focus on my true priorities.

A year and a half after Boruch’s birth, I’m still suffering from my brush with death, as the surgeries that saved my life left me with chronic pain and nausea, as well as internal scarring that necessitates regular visits to an oncologist and CT scans every couple of months. Yet I feel grateful to Hashem to be alive, and to have a healthy baby.

Today, Boruch is a normal toddler in every respect. He climbs on anything and everything and can empty an entire cabinet faster than you can say “preemie.”

He is lucky. Following standard medical protocol, nearly all babies born before the 23-week cutoff will be left to die, even though the age of viability is a gray area and the decision of which babies should be given a chance at life typically depends on the attending doctor and his or her personal bias. And most doctors don’t believe that a 22-weeker can survive, let alone thrive.

The legislation surrounding all this is murky, too. In a world where the age of viability is significant primarily with regard to a mother’s right to snuff out her baby’s life, far too little attention is paid to the rights of the babies themselves, or to the rights of parents who actually want to save their preterm babies. Many parents thrust into this situation — which often happens very quickly and without warning — are not knowledgeable enough to make an informed decision, so they rely on the doctors and the information they provide. Parents of preemies have more of a say than they realize, but they typically feel powerless to fight for their babies in the face of the doctors’ bleak prognoses.

To a large extent, whether or not a very premature baby will be given a chance at survival depends on the policy of the hospital she happens to be born in. And that policy varies significantly from one hospital to another. I know of a woman who gave birth to two 22-weekers — the first was born in a hospital that routinely leaves these babies to die, while the second was born in a hospital that was prepared to resuscitate and care for a baby that young. That second baby is alive and thriving today.

Perhaps the biggest miracle in my story is the change of shifts, and the fact that a new neonatologist was present in the operating room when my son was born. The neonatologist from the previous shift — the one who read me the three-page manifesto of possible complications — probably would not have given him a chance.

I am very well aware that most micro-preemies do not end up like Boruch. I am also well aware that resuscitation of these tiniest babies is not always the correct course of action, from both medical and halachic standpoints. While we were spared the wrenching dilemma of whether to resuscitate our baby, because he was clearly viable from the start, each family obviously needs to consult with their own rav and receive the psak appropriate for their circumstances.

Yet I do feel it’s important for people to be aware that it’s theoretically possible for some of these babies to survive. Then, instead of dooming them from the outset, each case can be weighed individually — with the knowledge that there are kids like Boruch out there who are laughing, walking, and saying, “Ma-ma.”

To have your story retold by C. Saphir, e-mail a brief synopsis to

lifelines@mishpacha.com or call +1.718.686.9339 extension 87204 and leave a message. Details will be changed to assure confidentiality.

(Originally featured in Mishpacha, Issue 795)