TURNING TIDES

    As told to Leah Gebber

Courtesy of Family First Magazine

     Until my baby was declared brain-dead, I never knew what it meant to hope in the darkness.

     Never give up hope. It’s a rule my husband talks about, thinks about, lives by. And now it was my turn to take his lesson and make it my own.

     On the morning of August 30, 2011, I watched my breakfast cereal cascade into the bowl and wondered how long it would take for the sugar to wake up the baby. It usually happened almost instantly—within minutes I would feel the reassuring kicks that told me my pregnancy was progressing as it should. That morning, I felt nothing.

     It wasn’t a big deal, I reassured myself. Everyone says that the baby doesn’t move too much in the last few weeks. That evening, when I still had little response, I headed to the hospital. Only a precaution.

     I lay on the hospital bed and listened to the amplified sound of the baby’s heartbeat, and it was like my heartbeat—suspended in dread—could continue. The obstetrician started a stress test, to determine if the baby was struggling. He was.

     After three plus hours of watching, testing, and consulting, the doctors decided to perform and emergency Cesarean. It was 1:23 a.m., and I was in an anesthetized daze when I heard that we had a baby boy. A boy, I thought groggily. So everything was okay after all.

     I woke up two hours later, feeling fire and flat absence in my belly. “Where’s the baby?” I asked.

     “There were a few problems,” came the response. “He’s been transferred to a different hospital.” So that’s where Yossi, my husband, was. He had obviously accompanied the baby.

     Despite my weakness, I hauled myself up on my bed. “What problems?” I demanded.

     “We think he’s anemic. So we gave him a blood transfusion.”

     Anemic? How did babies become anemic? And if he had already received the blood, why did they transfer him?

     Frantic, I called our Rav. He had already heard the news. “Mazel Tov,” he told me.

     “Mazel tov? Why are you telling me mazel tov?” I said. “The baby’s not doing well.”

     “I’m wishing you mazel tov because you saved the baby’s life.”

     It hit me then, and the doctors confirmed it later. Had we waited, had I neglected to get medical treatment until the morning, the baby would not have made it. As it is, he was hanging by a thread.

     But right then, I wasn’t told that. Not yet. A dear family friend, Rabbi Boruch Ber Bender from Achiezer Community Resoruce Center, had already stepped in to help coordinate the baby’s care. He sent Zahava Farbman, a bereavement counselor and a wonderful person, to talk to me and subtly prepare me for the news.

     Yossi and Boruch Ber, in the meantime, were at the other hospital with the baby. He lay in intensive care, and doctors watched his heartbeat slow, falter, and fade.

     The baby was prepped for surgery: doctors prepared to cut open his chest and attach him to the ECMO machine—a sophisticated bypass that acts in lieu of a heart. It’s a high-risk, last-resort procedure. Many of those who undergo it do not survive, it’s attempted only when there is no hope.

     The baby was wheeled into the operating theater and, just before they raised the scalpel, the monitors beeped. His heart beat had returned. A few minutes later ,a miracle occurred: the baby’s heart rate returned to normal.

     But other complications arose. The doctors who performed the blood transfusion had neglected to monitor its effects: blood vessels popped in his brain, and he began to hemorrhage.

     In the meantime, I was sent home from the hospital, empty handed. Four days after he was born, I still had not seen my son. I knew only that he was in deathly condition. When I managed to push aside the terror, I realized how desperatae I was to see him, touch him, hold him.

     But the baby’s condition had deteriorated further. A CT scan was performed. My baby was brain-dead.

     There are times when there is so little hope that you’re sucked into confusion, not knowing what to long for—the final blow that marks the end, or to prolong the agonizing present.

     Accompanied by Boruch Ber, we rushed to the hospital—with the help of his flashing lights, we made the 40-plus minute journey in under 20 minutes. There, we met with the doctors. I didn’t understand what they were saying, my brain was numb to the words and options and possibilities discussed so earnestly by all the white-coated men. The chief of NICO was unequivocal. “According to New York State law, you can switch off the machines,” he told us.

     “What?” Yossi said. He shook his head.

     “I advise you to withdraw all treatment. There’s nothing we can do.”

     “I am a religious Jew,” Yossi told him. “We don’t do that. We don’t pull plugs. Right?” He turned to a frum doctor who was standing nearby. The doctor nodded.

   But the chief of NICO insisted. “If this was my son, I’d withdraw treatment. Brain-dead is brain-dead.” After all, he explained, it was only a matter of hours until all his systems shut down, until any signs of life slowed and the final threshold was crossed.

     Yossi shook his head. He didn’t want to hear their dire predictions. Instead, he demanded that they continue treating him with the best that medicine could offer. “Are you going to tell me how you are going to continue caring for my son?” he asked. “or am I going to end this meeting?”

     Yossi clung to the future, but I simply wanted to say goodbye. With Zahava at my side, encouraging me, I made myself comfortable in a chair, and received my son into my arms. I held him gingerly at first, conscious of the tubes and monitors, but then I relaxed and allowed myself to stroke his cheek and touch his tiny fingers. I talked to him, told him that I loved him. And then I closed my eyes, and slowly, lovingly said Shema with him.

     We were in the eye of the storm. The whipped fury of the wind, the twisted column of dust, was outside of us. We were in a place of calm.

     “I love you,” I whispered and brushed a gentle kiss on his forehead. I set him down in his crib. I had said goodbye.

     When it was my husband’s turn, though, he cradled the baby in his arms and talked to him as though he had a life ahead of him. I was aghast. “Why are you doing this? Why?” I said.

     Yossi lifted his tortured face and met my eye. “I’m going to hope. I’m not giving up. I’m going to hope and pray that my child is going to live.”

     And pray. He was going to pray.

     I nodded. I had no strength for formal tefillah, but I, too, could talk to Hashem. And I did.

     The baby survived the night. The next day, I went back to the hospital and took photos. I wanted to remember him. When the camera flashed, the baby blinked. I pointed it out to the nurses. “Neurological,” they said, dismissing my hopes. “An instinctive reaction to light.” But a little later, when I tickled the baby’s toes, he responded. Surely that wasn’t just another neurological reaction?

     Two days later, the baby was still fighting for life. The doctors performed another CT scan. The result was both wonderful and terrible in its implications. Brain-dead was changed to brain –damaged.

     Experts were called in, Achiezer swung into action, our Rav was present to answer halachic questions I never dreamed existed. A whole table of people—adults who had once been babies themselves, who had grown and developed until they could deliberate on a life other than their own. Probabilities, chances, possibilities—it was endlessly complicated. And yet, it was so simple: life. The preciousness of a soul. The gift of every breath.

     Then Yossi’s sister passed away. She had been sick for a ling time, and suffering. Still, I buckled under the added blow. Yossi flew to Massachusetts for the levaya, he returned home to sit shiva. How much pain could a heart hold?

     At a time that I felt that I could walk no longer, HaKadosh Baruch Hu took us by the hands and led us forward. One day, the ventilating tube fell out. When the doctor reinserted it, the baby—little T, short for little tinok (baby), as he had now been named—gagged. The next day, to everyone’s amazement, Little T went off the ventilator, breathing alone. A swallow study showed that he might be able to swallow. The feeding tube was removed. Soon enough, Little T was transferred from the critical section of the NICU to the non-critical. We rejoiced.

     But the road ahead was—is—a long one. There are setbacks, times when new twisters whirl above my head, breathing terror into my reality. We learned that fluid was amassing around Little T’s brain, and a neurosurgeon performed two operation in one week, inserting a shunt that would drain the excess fluid. But event then, were moments of calm; the look in the surgeon’s eyes as he took Little T into his arms; his assurance, “I will take care of your baby as if he’s my own son.”

     As summer faded into golden browns of fall, and the shofar trumpeted Hashem’s majesty, we brought Little T home. “I don’t know what will be with the baby,” the doctor told us as he signed the release forms. “It’s all up to the Guy upstairs.”

     It was a lesson we were learning—and I think the doctors were learning, too. After all, how can a child with “a brain nothing more than mush” roll over? Eat with a spoon? Smile? Beam so much love at us?

     The day after Yom Kippur, we were finally able to give Little T his bris. Caught up with the endless medical consultations—talking to the neurosurgeon and ensuring that our pediatrician was in attendance—I had no idea how to begin making preparations. Achiezer once again stepped in, organizing a hall for 200. The place was mobbed.

     We called our baby Efraim Simcha—for he is our precious son, and he is the source of our joy.  At the seudah, my husband stood up to speak. He grasped the microphone in his hand, looked at all those faces who had helped and prayed and supported us. He saw me, sitting by the leafy foliage of the mechitzah, Efraim Simcha in my arms. He swallowed, squeezed his eyes closed. But he couldn’t stop the tears and his silent, grateful weeping was more eloquent that any speech.

     The furious winds have abated, I have emerged from the storm cellar to face the world. I divide my day between my part time job at the office and my full time job of giving Effy every therapy and intervention that will help him. His vision is impaired; we still don’t know about his hearing. He is periodically hospitalized, wheeled into surgical suites, followed up, wondered over.

     Because Effy is a source of light and laugher. He’s a baby with tangible chein. He’s a baby who makes me fall in love with life again and again. And he’s a baby who reminds me that even when everything seems desperate, even when the only option is despair, there’s always a place for hope.

Please daven for Efraim Simcha ben Shepsi Rachel