A Story of Hope
April 27, 2023
I sat beside Nechama’s hospital bed, my head in my hands. I wasn’t sad, scared, or upset. I was numb. There was a surrealism to the situation that my mind couldn’t process. Doctors and nurses buzzed in and out of the room, hovered over my daughter, and conferred with bent heads and hushed tones, but I barely noticed any of it. The array of machines surrounding my daughter’s tiny frame beeped and squawked; the lines and numbers on the sensors and monitors alongside her jumped and flashed, but I felt nothing. Our precious 18-month-old, Nechama, had just been handed a dismal prognosis.
I glanced up at my husband. Boruch’s ashen, pallid face and his thousand-mile stare told me in no uncertain terms that he was in no position to handle this situation either.
We needed help, and we needed it fast. We had 10 children at home, a newborn in the NICU, and little Nechama here at a Regional Hospital in New Jersey.
Only one name came to mind: Rabbi Yehoshua Brodsky. He was a friend of my husband’s from back in their yeshivah days, and I knew he was well versed in the medical field. He was working for Chai Lifeline and his days were filled exclusively with helping cancer patients, I wrongly presumed. Still, perhaps he could help guide us to the right place.
With shaking hands—I couldn’t help but notice how pale they were—I pulled up and dialed his number. The phone rang and rang again.
“Please pick up,” I whispered. We were holding on by a thread; we needed something to go our way.
It was a win. A tiny one, but at this point I was ready to celebrate anything.
My words came out in a torrent.
“I know this isn’t your field, but our daughter is dying. The doctors said it’s over, but it can’t be; we can’t just give up on her.” My voice broke. “We’re not ready to bury a child.”
“Mrs. Segal,” Yehoshua’s calming voice answered, “we will be with you every step of the way. Please start from the beginning.”
I took a deep breath.
The world goes black
It was a gorgeous spring day; the weather was perfect. The world smiled, and so did we.
Our rambunctious rabble danced their way through their morning routines, their parents chasing after them with a mixture of pride and agita as we tried to get the day off the ground.
We had just 11 at home; our 12th child, who was born two months early, was in the NICU at Hackensack University Medical Center, but she was gaining strength and weight each day. A few more weeks and she would be ready for her much-awaited homecoming.
As we did each morning, my husband took the older children to their bus stops and the younger ones to their playgroups. I packed up a bag with supplies and headed off to Hackensack, where I would spend a few hours with the baby before returning home at the same time the kids did.
While making my way on that fateful morning to the see the little bundle of joy waiting for me in the hospital, I received a concerned call from my 18-month-old’s playgroup morah.
“Nechama’s not acting regular. Is she okay?”
“Oh, she’s fine,” I answered. A slight grin curled my lips upward as I remembered her practically bouncing off the walls the night before. “Maybe try giving her an early nap.”
I was in the hospital roughly 30 minutes later and was just settling in with the newborn when I received another call. This one was far more concerning.
“Please come now,” Nechama’s morah begged. “You need to come now.”
A few minutes earlier, Nechama had inexplicably collapsed. Hatzolah had rushed to her aid and swiftly determined that she had suffered a hemorrhagic stroke—a devastating condition in which a blood vessel ruptures and bleeds into the surrounding brain.
Paramedics were rushing her to the closest regional trauma center, and I had to get there. Now.
As I hurried to the hospital, a million questions raced through my mind. A stroke in a young child? Is that a thing? It had to be a mistake. I phoned my husband; he was on his way too. We were too stunned to make sense of what was happening and could only daven that everything would be okay.
My husband and I entered the hospital at nearly the same time, and we were immediately ushered into the wing where my Nechama was being treated. Seeing her like that was heartbreaking, but I was too concerned to take more than a moment’s notice.
A somber-looking doctor approached us and laid out the situation. It wasn’t good. The rupture had caused blood to literally drown her brain in its own life source. Nechama was still here, but her odds of survival would need nothing short of a miracle, he solemnly told us.
My world had gone black.
Chai Lifeline steps in
“Okay, I think I have the picture,” Rabbi Brodsky said after I’d finished my story.
And with that, the wheels of the colossal Chai Lifeline machine were put into motion. Over the next few days, as the medical team heroically worked to stabilize Nechama, Rabbi Brodsky collaborated closely with his friend Shlomo Ingber of Lakewood Bikur Cholim to guide us in tactfully and effectively advocating for our daughter with the medical team. Most importantly, they helped facilitate a safe and responsible transfer to the nearest tertiary-care children’s hospital, which was CHOP, where world-renowned specialists could attempt to save her life.
But we had a dilemma. We had children at home who required our love and attention, and without family nearby to step in, we had to get back immediately. At the same time, how could we leave our critically ill child alone in the hospital?
“Mrs. Segal, I urge you to remain where you are,” Rabbi Brodsky said softly but firmly. “Rest assured that everything will be taken of.”
And as if by enchantment, all matters were tended to. As we sat with Nechama davening for a miracle, Chai Lifeline was in a flurry of activity. Its staff had sprung into action.
With our permission, a dedicated group of Chai Lifeline volunteers swiftly arrived at our doorstep, providing meals, tidying up, and restoring order. Additional volunteers stood by to greet our children upon their return home from school; engaged them in activities, homework, and supper; and even tended to their exact bedtime routines. Furthermore, Chai Lifeline’s experts in crisis management advised us how to speak to our children, allowing them to safely adjust to our new reality.
Little pink shoes
After conducting a comprehensive examination of Nechama, the doctors at CHOP sat us down for a meeting.
“To be frank, it’s very serious. But there’s some hope. Keep praying,” the doctors told us.
Hope. That’s all we wanted. A chance that our Nechama would survive.
At this point, Chai Lifeline suggested that we go home. It had been four full days since we had last seen our other children, and the kids needed us in their lives. “Take a break, freshen up, connect with the kids, and then come back,” they said. “We’ll be on top of everything while you’re there. There’s nothing to worry about.”
As we approached our home in a Chai Lifeline volunteer’s vehicle, we were met by the children. Their eyes were sparkling, their clothes neat and fresh. The contrast between us and them was almost comical. By anyone’s guess, my sheitel had been through a hurricane; my clothes had more creases than an elephant’s skin. My husband’s pants and jacket weren’t in any better shape.
We managed to put on a brave and happy face as we were ushered inside to see the arts and crafts the younger children had made—provided and guided by Chai Lifeline and its volunteers—while we were gone.
After some time together in the family room, I excused myself. I went up to the master bedroom and was struck by an unexpected sight. Lying on my dresser were Nechama’s little pink shoes. We had bought them barely a month before, and she would strut around proudly, showing off its fur linings to anyone she could.
I practically lunged at them. Clutching the shoes close to me, I collapsed on the floor, tears streaming down my face as I finally allowed the anguish of the past few days to wash over me. Those tiny shoes weren’t just a little girl’s shoes. In that moment, they were Nechama’s stand-in; they represented the precious, adorable little girl whom l had just left unconscious and near death in a cold hospital room.
No stone left unturned
After several white-knuckle days, doctors had positive news to share: Nechama wasn’t quite out of the woods, but the medical interventions were working, and she was making progress. The bleeding had receded, though it would take time to learn how severe the permanent damage was. But she was alive.
We breathed a sigh of relief, but only for a few minutes. Shavuos was rapidly approaching, and we were at a loss as to how to approach it. My husband and I were constantly on the move, and putting together Yom Tov quite simply didn’t seem possible.
But we quickly learned that when we moved, so did Chai Lifeline.
When we had to be at home, Chai Lifeline had people checking in on both our hospitalized children, at Hackensack and CHOP. When we were in the hospital, a cavalcade of volunteers was with the kids, keeping them busy and ensuring that our house remained a home.
One volunteer noticed that our oven wasn’t working properly. Within a day, it was fixed. We weren’t home when the repairman came by, but we told our son to ask for an invoice. The repairman wouldn’t hear of it—Chai Lifeline had already settled the bill.
The same thing played out when our sink suddenly stopped working and no amount of attempts by myself or my husband would bring it back to working condition. We didn’t mention anything to them, yet somehow Chai Lifeline had a new one installed—no bill included.
Chai Lifeline’s capability to address any emergent requirement was exemplified by this unforgettable incident: One day, as my husband and I drove westbound on Route 70 on our way to CHOP, we were involved in an accident. It wasn’t serious, nor was it our fault, but the other driver was irate. Fuming that his vehicle was damaged, he called the police and threw a tantrum, trying to convince the officers that the accident report should indicate that my husband was at fault.
We didn’t have the time to sit around and fight. Nechama was scheduled to undergo an important procedure, and we were intent on being there. We called Chai Lifeline and asked for advice.
Within a few minutes, another police cruiser rode up to the scene, lights flashing. The officer spoke briefly with the one writing the accident report and then approached us.
“The accident report will be sent to you in the mail,” he said. “For now, follow me.”
Then he gave us an escort directly to CHOP.
Later, we found out that Yehuda Fryer, who worked at Chai Lifeline at the time, had used his vast connections to get us out of a jam and to the hospital in record time—and most importantly, in time for the procedure. The immensity of that chessed alone is one I still can’t wrap my mind around.
After excruciating months of hospitalization and additional months of rehabilitation, our Nechama was ready to come home. The little girl whom doctors had written off as a lost cause was still with us. She still needed years of therapy, but she was here. We couldn’t ask for anything more.
Her little baby sister, no longer a newborn, was waiting at home for her. So were the rest of our children. And yes, Chai Lifeline was there as well. Their volunteers had strung up streamers and balloons, and a huge sign adorned our front door.
In an unofficial ceremony of sorts, Nechama was brought inside amid singing, dancing, and a lot of happy tears. The kids immediately wanted to play with her and show her all that she had missed, but there was something I had to do first.
Clutching her tightly in my arms, I carried Nechama upstairs and into my room. Placing her on my bed, I grabbed those little pink shoes with the fur and placed them gently on her tiny feet. I looked at her; she smiled. And once again, I cried.