Posted on 01/17/26
What They Don’t Tell You After “Your Baby Has Spina Bifida”
Keep Climbing: A Story of Turning Struggle into Strength
In the waiting area of the Alyn Hospital clinic, the air was cool and overly clean, laced with the sharp sting of antiseptic. Fluorescent lights hummed overhead. A child’s braces clicked with each uneven step. His mother sat just beyond reach, spine rigid, watching as if every step led to a cliff’s edge.
Her eyes traced the uneven sway of her son’s gait as the therapist whispered encouragement. It was not the child’s effort that pained her, it was her own heart, straining under all she couldn’t fix.
Beside her, another woman held a bottle and a blanket, her daughter lying on the mat in front of her. The two women glanced at each other—just enough to recognize the same worry behind each other’s eyes.
The babies would not remember the moment. But their mothers would. The tentative conversation. The relief of finding someone else on the same uncharted road. Parents watching children work harder than others ever have to. Tiny legs bearing weight. Small hands gripping parallel bars. Progress measured in millimeters.
A Full Circle
Twenty years later, those two babies, Naftoli and Simi Rabinowitz, would meet again as adults. This time, they would marry and build a life together. And eventually, they would come to understand what their own parents felt in that waiting room: the burden of carrying questions no one should face alone.
Years before, they had whispered dreams about someday helping other families with the same diagnosis. But it took their own season of struggle to transform someday into now.
They were driving home when it clicked.
“We should do this,” Simi said suddenly. Not later. Now.
By the time they pulled into their driveway, they were already making phone calls.
First to a friend who had helped their shul navigate the maze of nonprofit paperwork.
The second call was to another couple they thought would be perfect partners—people who understood the struggle, who had the energy to build something from nothing. The couple agreed immediately. Yes, this was needed. Yes, they wanted to be involved.
Within days, they had a lawyer, incorporation papers, bank accounts. What had been a dream conversation was becoming something real.
“We’re sitting around at our dining room table and doing this,” Simi says. “It’s not like we’re sitting in an office getting a paycheck.”
But even as they waded through paperwork, they knew the real work would be different.
They reached out to families from old Shabbatons, to parents they’d met through medical networks. Some embraced the idea immediately. Others had moved on; fifteen years changes people’s lives, their priorities, their capacity for taking on new projects.
It didn’t matter. They would start with whoever was ready to climb, because they understood firsthand the struggles those families were experiencing.
The Barbecue
The scent of sizzling hot dogs drifted through the backyard, mingling with the hum of conversation and the occasional burst of children’s laughter. Folding tables lined with foil pans, ketchup bottles, and tissue boxes sat under the early evening sky.
A toddler in ankle braces toddled unevenly between lawn chairs. A mother reached to steady him, then let go—just in time for him to find his footing.
Naftoli chatted with one family while keeping an eye out for new arrivals. Simi moved between groups, greeting each one by name, remembering details. How did her surgery go? Did the new therapist start yet?
For the families who had spent years isolated by diagnosis, hospital corridors, and waiting rooms, there was something rare in the air: belonging.
At the edge of the lawn, one mother stood watching her five-year-old daughter laugh—really laugh—for the first time in months.
“She doesn’t relate to kids her age,” the mother told Simi, tears in her eyes. “She doesn’t really have friends. At school, when the other kids talk about fire trucks and superheroes, she’s dealing with procedures they’ve never heard of. But here…”
Here, at Keep Climbing’s barbecue, her daughter had found children who understood. Kids who knew what it meant to walk differently, to face surgeries most children couldn’t imagine.
Across the yard, Naftoli watched and smiled, remembering the friends who had once made space for him.
“In school, the class went ice skating,” he recalled. “I thought I’d just go along and sit it out. But my friends asked around and got me a special walker for the ice. I still fell—but it was fun. I was included.”
Later, when the class went skiing in high school, he joked, “I’ll sit in the lodge and watch everyone fall.” But his friends wouldn’t let him sit on the sidelines.
When he asked one of the instructors if someone with his condition could ski, they introduced him to adaptive skiing—something he hadn’t even known existed.
“They put me on skis,” Naftoli said. “And I had a blast.”
The Pizza Shop
Naftoli still remembers the father who stood up during one of their early Shabbatons and shared a story many parents could relate to.
“I was at a pizza shop with my son,” he began, his voice calm but candid. “He’s in a wheelchair, and you know how it is—people were staring.”
The room had gone quiet. Every parent there knew that feeling, the curious eyes, the way a simple outing could become an ordeal.
“My son was getting upset, understandably,” the father continued. “So I decided to make a joke out of it. I turned to the people staring and said, ‘This is my son. He has spina bifida. He’s in a wheelchair, and we charge twenty-five cents a stare.’“
Laughter rippled through the Keep Climbing audience.
“At that point, people just turned away,” the father said, grinning. “But they got the message.”
It was exactly the kind of practical wisdom that families shared at these gatherings—not from medical textbooks or therapy sessions, but from someone who had walked the same path and found a way to navigate it with dignity and even humor.
Different Mountains to Climb
While Naftoli’s childhood was cushioned by supportive friends, Simi’s journey was hewn from different stone. “I had more of a struggle fitting in,” she recalls. “I experienced a lot more bullying.”
The memory that stays with her is specific and sharp. A classmate trailing behind her in the hallway, mimicking her gait, “walking like a chicken” to mock the way Simi moved.
“School could be really difficult,” she says. “It’s not an easy place for a lot of kids, but especially when you’re dealing with medical procedures while other kids are talking about police cars and fire trucks.”
The turning point came after high school. “I had to look back and say, ‘Fine. I can either live my life the way I have until now, or I can see this as an opportunity. I’m not in school anymore. I’m not being bullied anymore. I want a job. I want to have a life. I want to get married.’“
It was a conscious decision. “I decided Im going to do whatever I can to get these treatments under control so I can live an independent life.”
Meeting Again
Those therapy buddies from Alyn Hospital reconnected twenty years later in their early twenties. They dated briefly, but it wasn’t yet bashert. Five years later, they found each other again. “That’s when my life really began,” Simi says.
Their shared understanding became the foundation for both marriage and mission. When they looked at struggling families, they didn’t see statistics or case studies, they saw themselves.
The Calling
Naftoli found his professional calling in the corridors of Johns Hopkins Hospital, where he works as a chaplain. “I discovered how much I enjoyed giving back, just being there for other people going through a hard time,” he explains.
His position connects him to the medical community. At conferences, he speaks with neurologists and pediatricians about Keep Climbing. “If you have a patient with spina bifida,” he tells them, “this is a resource worth knowing.”
Word spreads organically. Doctors refer families, families share with others, and the network continues to grow, one human connection at a time.
The Reality They Face
The words always arrive like a verdict: “Your baby has spina bifida.” In the silence that follows, parents hear the sound of their imagined future cracking apart. Will she walk? Will he be independent? Can we handle this?
The statistics are stark: in America, sixty percent of babies diagnosed with spina bifida are never born.
“What runs through people’s minds is ten times worse than the actual reality,” Naftoli explains. “They think vegetative state. They think tragedy.”
Modern medicine offers in-utero surgery—closing the spine while the baby is still developing to minimize nerve damage. But that breakthrough brings its own confusion. “A lot of families think their child is cured,” Simi says. “They say, ‘We’ll do the surgery and the child will be fine.’ Then when the child turns two or three and still has major challenges, they’re shocked.”
The surgery helps prevent further harm, but it doesn’t reverse what’s already affected. It’s a shield, not a cure. “They call it the snowflake disease,” Naftoli explains. “Just like no two snowflakes are the same, no two cases of spina bifida are alike.”
Naftoli mentions his own surgeries, over thirty operations throughout his life. “I have a friend who walks with crutches who only had one or two surgeries,” he says matter-of-factly. “It really is different for everyone.”
That unpredictability is precisely why Keep Climbing exists. There’s no standard roadmap, no one-size-fits-all prognosis—which makes connection, support, and community all the more essential.
Doctors, even the kind ones, often speak in statistics and worst-case scenarios.
“Your child will never walk.”
“They’ll never be able to marry.”
“They’ll never live independently.”
Some parents are even told their child might as well be “brain dead.”
A Different First Response
But what if the first words parents heard were different? What if, instead of a litany of limitations, they heard “Mazel tov—you had a baby”?
Naftoli remembers the story his mother always told. When he was born, well-meaning visitors came with condolences disguised as comfort. Then, finally, a family friend came holding a small package. “This is so you have something nice to take the baby home with,” the friend said. It was a simple baby jumper, but it was the first actual gift anyone had brought.
“My mother said, ‘Wait a second. Yeah, you’re right. I had a baby. I’m bringing home a baby.’”
That moment stuck. And it shaped how Keep Climbing approaches every new family.
“I always try to start with Mazel Tov, b’sha’ah tovah,” Naftoli explains. “Then we can talk about what comes next.”
The difference is profound. Instead of being introduced to fear, families are welcomed into life. Instead of limitation, they’re offered possibility.
The Work That Matters
Last December, one of Keep Climbing’s biggest dreams came true. They held a national Shabbaton bringing families together from across the country.
Parents came from as far as Mexico and various U.S. cities to meet Dr. John Gerhardt, head of pediatric urology at Johns Hopkins and a member of Keep Climbing’s medical board.
“It was supposed to be a one-hour Q&A session,” Naftoli says. “It ended up being two. He told me there wasn’t a single dumb question. People came prepared because we’ve all struggled to find the right doctors. All of a sudden, here was someone like him at their fingertips.”
Dr. Gerhardt also met privately with families throughout the day. “Everyone who came said it was very worth their time. They got a lot of chizuk from it. They connected with families they didn’t even know lived a few blocks away.”
But the work didn’t stop at the Shabbaton. Keep Climbing continues to build practical, lasting support: medical supply exchanges in different cities, support groups for parents, connections for isolated teenagers. “I once went to the hospital and miscounted my supplies,” Naftoli explains. “It’s important to have that network.”
The Teenagers Who Don’t Fit
Much of their work involves the emotional landscape that medical care can’t address. Naftoli and Simi strongly advocate for mental health support as part of the healing process.
“A lot of kids don’t connect with kids their age,” Naftoli explains. “While their friends worry about summer camp, these kids are thinking, ‘When will I recover from surgery? What physical therapy will I need?’ It’s a different mindset.”
For teenagers, that emotional divide can feel like a chasm. While peers stress over exams or drama with friends, these teens are juggling wheelchairs, wound care, and recovery timelines. The loneliness can be overwhelming.
Simi works closely with these teens, drawing from her own painful memories. “The pattern is usually the same,” she says. “Depression, isolation, the feeling that the world is ending, when really, it’s only beginning.”
Even in the world of shidduchim, the challenges persist. They’ve seen how people with disabilities can sometimes find deeper connection with others who understand, but they’re also cautious not to turn that into a formula. “It’s not ‘problem plus problem equals match,’” Naftoli says. “It’s deeper than that.”
Simi puts it this way, “Sometimes Hashem gives you challenges so you’ll meet the person who’s meant for you. If I hadn’t gone through my struggles, I would never have married my husband.”
Fighting the Stigma
One of the hardest battles families face isn’t medical, it’s emotional. It’s the decision of whether to be open about their child’s condition. They’re afraid. Will it affect shidduchim? What will the neighbors say? Will their child be treated differently?
“The truth is,” Naftoli says gently, “what I can’t hide, I might as well be honest about. Whether it’s braces, a limp, ongoing treatments or appointments. There are certain things we just can’t really keep hidden.”
He’s seen the damage secrecy causes. Sometimes even siblings are left in the dark. They only get to hear the truth from neighbors or classmates because parents kept it so secret. “You think no one knows,” he says, “but everyone knows.”
Simi agrees. “We don’t push anyone who’s not ready,” she explains. “But when people are struggling with how open to be, we just share our experience. “Most people you talk to are going to be supportive and kind.”
What Success Looks Like
Sometimes the impact is immediate, like the mother at the barbecue, watching her daughter laugh with other children for the first time in years. Sometimes it’s a phone call from England, where a family tried a technique Naftoli had mentioned and found it worked better than anything they’d tried before.
And sometimes, it’s even more understated. It’s simply being visible proof that the future isn’t always what the doctors predicted.
When families meet Naftoli and Simi, married, independent, living full lives, it changes everything they thought they knew about their child’s future.
“It’s not always what you say,” Naftoli reflects. “Sometimes it’s just being there. People get strength just from seeing there are others.”
A mother from Arizona was moved to tears when she met them. “She was so relieved to meet an adult,” Naftoli says. “Just to see that the future isn’t necessarily as bleak as she feared.”
The Vision
What began as a dining room table conversation has grown into a lifeline for nearly 170 families across the U.S. and beyond. Keep Climbing now organizes Shabbatons and support groups, maintains medical supply exchanges, and offers proof that the words “Your baby has spina bifida” don’t have to be a death sentence.
“We hope Mashiach comes and we don’t need it,” they say. “But until then, we’re here.”
Their vision is national, even global, especially focused on reaching families outside the tri-state area, who are more isolated.
As the organization grows, so does the need for help—photography, graphic design, fundraising, event planning. “Right now, we wear every hat,” Naftoli says. “Directors, graphic designers, financial officers, secretaries rolled into one. We come home from work, exhausted, and sit down to start our second job.”
They hope to host another Shabbaton soon, and in the meantime, they’re planning smaller, local gatherings to help families connect more often and more meaningfully.
Keep Climbing
“I think that’s what life is,” Simi reflects. “All the struggles we go through are meant to be turned into something purposeful. They’re supposed to be turned into good, to help others.”
The same stubbornness that pushed them through countless surgeries and made them refuse to give up when walking was harder, when treatments were exhausting, when others said “you can't,” that same determination now fuels their mission to help other families. They use what they've learned about how to live with limits and still belong to support those facing similar challenges. And the strength they found in each other inspires their commitment to ensure no one needs to walk this path alone.
“I did not have it easy,” Simi admits. “But that personality of keep going, of not stopping, really helps me in other ways in life. My life was very challenging, but being able to channel that and say, ‘Fine, I’m going to use my stubbornness this way—we got to do something. We got to get it done.’”
From worried mothers in a clinic, to barbecues where children finally feel they belong, Keep Climbing is a story about grit and grace. About turning pain into purpose, and limitation into strength, not just for themselves, but for a growing community.
A story about falling, rising, and never giving up. A story about strength, hope, and the resilience to keep climbing.
Keep Climbing provides support, resources, and community for families affected by spina bifida. For more information or to connect with other families: Naftoli Rabinowitz at 443-415-1857 or visit keepclimbingsb.org.