Indefinite Hiatus

Spina Bifida is a congenital condition that effects every 1 in 2,000 births.

And no one thinks it will be them

The clinic room is dim, lit only by the soft blue glow of the ultrasound screen.

Kathy is smiling before the wand even touches her stomach.

Sid’s already leaning forward in his chair, elbows on his knees, like he’s watching a Game 7 overtime—except this time, his hands aren’t clenched from nerves. They’re open, resting on Kathy’s thigh, thumb brushing slow, absent circles.

They’ve done this before. Once at twelve weeks and once at sixteen weeks. Just quick checks. Everything perfect both times.

But twenty weeks is different.

This is the one where they get to see their baby.

“Ready?” the tech asks gently.

Kathy nods immediately. “Yeah—yeah, we’ve been ready for weeks.”

Sid huffs out a quiet laugh. “Months.”

The gel is cold, but Kathy barely reacts. Her eyes are locked on the screen the second the image flickers into view.

There.

Their baby.

You can see her head, her tiny spine, the curve of her body. She shifts, just slightly, like she knows she’s being watched.

“Oh my God,” Kathy breathes.

Sid doesn’t say anything at first. He just stares.

Then, softer than Kathy’s ever heard him, “That’s… that’s our baby?”

The tech smiles. “That’s your baby.”

Kathy’s hand finds his instantly, squeezing so tight it almost hurts. He squeezes back harder.

They’re both grinning now, completely gone, completely in it.

“Do you—is it too early to tell the gender?” Kathy asks, already half-laughing.

The tech tilts the wand, adjusts the angle.

A pause.

And then—

“Well… looks like you’re having a girl.”

Kathy gasps, a hand flying to her mouth. “A girl?”

Sid actually laughs out loud this time, full and bright and disbelieving. “No way.”

“A girl,” the tech confirms.

Kathy turns her head toward him, eyes already glassy. “We’re having a daughter.”

He leans in, presses his lips to her hand for just a second. “Our girl,” he murmurs.

Everything feels perfect. Everything feels full. Like the room can barely hold them.

The tech keeps moving the wand.

Clicking. Measuring. Pausing.

Her smile stays in place—but something about it changes.

It’s subtle. Almost nothing.

But Kathy feels it.

“Is everything okay?” she asks, trying to keep her voice light.

The tech doesn’t look at her right away. She adjusts the screen again, takes another measurement.

Then, in that same bright, practiced tone—

“Oh, I'm just the tech, so I can’t discuss any results, but the doctor will be in shortly!”

It’s too quick.

Too rehearsed.

Too cheerful.

Kathy’s stomach drops.

Sid straightens in his chair. His hand tightens around hers again, but this time it’s not soft. It’s firm. Grounding.

“What does that mean?” he asks, calm—but there’s an edge under it.

The tech just smiles again. “The doctor will go over everything with you.”

And then she leaves.

The room feels colder without her.

The screen is still on, their daughter frozen mid-frame, but neither of them is looking at it now.

Kathy’s heart is pounding so loud she swears it’s echoing.

Sid’s jaw is tight.

“This is normal, right?” Kathy says, too fast. “They just—double check things sometimes.”

“Yeah,” Sid says immediately. “Yeah, of course.”

But he doesn’t sound convinced.

He doesn’t look convinced.

Minutes pass.

Too many.

And then the door opens again.

This time, it’s the doctor.

She sits down slowly.

That’s the first thing Kathy notices.

Slow.

Careful.

Not rushed.

Not casual.

“I’m so sorry to keep you waiting,” she says gently, smiling softly. “And first—congratulations. Your baby girl looks very loved already.”

Kathy nods quickly. “Thank you. Is—everything okay?”

The doctor takes a breath.

And everything changes.

“There are some findings on the ultrasound that we need to talk about.”

Sid’s hand is gripping Kathy’s now. Hard.

The doctor turns the screen slightly, pointing.

“This is your baby’s spine,” she says. “And here—around the lower back, at about the L2 level—we’re seeing an opening.”

Kathy stares at the screen, not understanding.

“An opening?” Sid asks, voice tight.

“It’s a condition called myelomeningocele, which is the most severe form of spina bifida.”

The words don’t land all at once. They kind of scatter.

“What does that mean?” Kathy whispers.

The doctor’s voice stays calm. Steady.

“It means that part of your baby’s spinal cord and nerves haven’t developed properly and are exposed through an opening in the spine.”

Kathy’s breath catches.

The doctor continues, gently but clearly.

“Because of where it’s located—at L2, in the lumbar region—your daughter will not have normal movement or sensation below that level. She will not be able to walk independently, and it’s very likely she won’t be able to stand without significant support.”

Sid closes his eyes for a second.

Kathy just stares.

Not blinking.

Not moving.

“There are also other things that often come with this,” the doctor says. “Many children with myelomeningocele develop hydrocephalus—fluid buildup in the brain. To treat that, they usually need something called a VP shunt.”

Kathy swallows. “What’s that?”

“It’s a small device that’s surgically placed to drain excess fluid from the brain into the abdomen, where the body can absorb it. It helps relieve pressure and protects the brain.”

Sid nods slowly, like he’s forcing himself to understand every word.

“There can also be bladder and bowel challenges,” the doctor continues. “Your daughter will likely need lifelong support with those functions.”

Kathy’s hand drifts down to her stomach.

Instinct.

Protective.

“There may be orthopedic issues as she grows—things like scoliosis, which is a curvature of the spine, hip dislocations, tightness in her joints, and clubbed feet.”

The list feels endless.

Heavy.

“But,” the doctor says softly, “there’s more.”

Kathy’s eyes flick up.

“We also see signs of something called a Chiari II malformation.”

Sid exhales sharply. “What is that?”

“It’s when part of the brain—the cerebellum and brainstem—are positioned lower than usual, extending into the spinal canal. It can affect things like swallowing, coordination, and sometimes vision. Some children have a reduced gag reflex, difficulty feeding early on, or shaky eye movement issues like nystagmus.”

Kathy feels like she’s sinking.

Like the chair is disappearing beneath her.

Like she can’t get enough air.

“But I need you to hear this too,” the doctor says, leaning forward slightly.

And something in her tone shifts.

Warmer.

Stronger.

“Many children with spina bifida—especially with the right support—have normal cognitive development. Your daughter has a very high chance of being intellectually typical.”

Kathy blinks.

“That means she can learn, think, communicate, form opinions—be independent in her own ways.”

Sid looks at her then.

Really looks.

“She can have a full, meaningful life,” the doctor says gently. “She will face challenges, yes. Significant ones. But she can also be strong, capable, and completely herself.”

The room is quiet.

Too quiet.

Kathy finally looks back at the screen.

At their daughter.

Still.

Small.

Perfect.

Her voice breaks when she speaks.

“She’s still… our girl.”

Sid nods immediately, his hand coming up to cradle the back of her head.

“Yeah,” he says, rough. “Yeah, she is.”

He looks at the screen too now.

At his daughter.

His voice is quieter when he adds—

“Nothing about that changes.”

Kathy leans into him, tears slipping silently down her cheeks.

“But everything else does,” she whispers.

Sid presses his lips to her hair.

And for the first time since they walked in, he doesn’t have an answer. He just holds her tighter.

And stares at their little girl, already loving her more than anything in the world.

Months later, the delivery room is loud in a way Kathy didn’t expect.

Not chaotic—just full.

Voices, movement, the steady rhythm of machines. A team already in place before she’s even fully aware of them. Neonatology. Neurosurgery on standby. Nurses moving with quiet efficiency.

Everything is prepared.

Because they already know.

Sid never lets go of her hand.

Not once.

“You’re doing so good,” he keeps saying, over and over, his voice low and steady against her ear. “You’ve got her. We’ve got her.”

Kathy nods, breath shaky, body exhausted—but her mind is locked on one thing.

Her daughter.

“Is she okay?” she asks between contractions, again and again. “When she comes out—is she going to be okay?”

No one lies to her.

But no one leaves her alone in it either.

“We’re ready for her,” one of the doctors says gently. “The second she’s born, we’ll take care of her.”

When it finally happens, it’s fast.

A rush of movement.

One last push—

And then—

A cry.

High. Sharp. Immediate.

Kathy sobs the second she hears it. “That’s her—that’s her—”

Sid’s head drops forward for a second, relief crashing through him so hard his knees almost give out.

“She’s crying,” he says, voice breaking. “She’s crying, Kath—she’s—”

But he doesn’t finish.

Because the room shifts.

Not panic.

Not exactly.

But urgency.

Controlled. Focused.

Their daughter is only briefly lifted—just enough for Kathy to see a glimpse of her face, red and scrunched and alive—

—and then she’s turned carefully, very carefully, onto her stomach.

“Why—why are they—?” Kathy’s voice spikes.

The doctor is already speaking, calm but quick. “She has an exposed spinal lesion on her lower back. We need to protect it.”

Sid’s chest tightens.

He can’t see it clearly from where he’s standing, but he sees enough.

A small, fragile sac at her lower spine.

Uncovered.

Vulnerable.

Everything in him wants to move closer, to do something, but there’s already a team surrounding her.

They place her prone—on her stomach—so there’s no pressure on the lesion.

A nurse immediately covers it with sterile, saline-soaked dressings and a clear protective wrap.

“Is she okay?” Kathy asks again, voice shaking harder now. “Why aren’t they bringing her to me?”

“They need to stabilize her first,” someone says gently.

But Kathy’s already crying.

Sid leans down, pressing his forehead to hers. “She’s here,” he whispers. “She’s here, okay? She’s fighting.”

Minutes later, they bring Sid over.

“Dad, you can come see her.”

He hesitates for half a second—just enough to look back at Kathy.

“Go,” she says immediately. “Go with her.”

He crosses the room slow.

And then he stops.

Because there she is.

So small.

So real.

Wrapped carefully—but not like a typical newborn.

She’s still on her stomach, her lower back covered in that protective dressing. There's tubes and monitors everywhere. But he can see her tiny chest rising and falling.

Her legs are still.

Completely still.

Sid swallows hard.

“Hey,” he whispers, crouching down beside her. “Hey, baby girl…”

His hand hovers for a second before he gently touches her shoulder—one of the only safe places.

She reacts.

Just slightly.

But it’s enough.

His throat closes.

“She’s strong,” one of the nurses says softly. “She came out crying, which is a great sign.”

He nods, eyes burning. “Yeah. Yeah, she is.”

Within the first hour, things move quickly.

They don’t wait with myelomeningocele.

“In the next 24 to 48 hours, she’ll need surgery to close the opening on her spine,” the neurosurgeon explains to both of them once Kathy is able to see her.

Kathy’s still in bed, pale and exhausted, but she refuses to rest until she knows everything.

“They’ll cover the exposed nerves, protect the spinal cord, and reduce the risk of infection,” he continues. “It’s the first step.”

Kathy nods, clutching the blanket. “And the fluid in her brain?”

“We’ll monitor closely,” he says. “Many babies develop hydrocephalus in the first days or weeks. If that happens, we’ll place a VP shunt.”

Sid glances at Kathy.

They both remember.

A tube.

Draining fluid from her brain to her little tummy.

Later, in the NICU, Kathy finally gets to see her up close.

Really see her.

Their daughter’s eyes flutter open briefly.

Dark.

Unfocused.

Perfect.

Kathy reaches out carefully, her hand trembling as it brushes her tiny arm.

“Hi,” she whispers, tears slipping down her temples into her hair. “Hi, my girl…”

Sid stands beside her, one hand on Kathy, the other resting gently near their daughter.

“She’s so little,” Kathy says.

“And so stubborn already,” Sid murmurs. “Came out yelling.”

Kathy lets out a soft, broken laugh.

But then her eyes drift.

To the monitors.

To the careful positioning.

To the reality of everything they were told.

“She’s not moving her legs,” she whispers.

Sid’s jaw tightens.

“I know.”

A long pause.

“But she’s here,” he says quietly. “She’s here, Kath.”

Their daughter makes a small sound.

Not a full cry.

Just a soft, protesting noise.

And Kathy smiles through her tears.

“Yeah,” she says, voice shaking. “Yeah, she is.”

That night, neither of them leaves.

Not really.

Even when the nurses insist on rest, on sleep, on taking turns—

they always come back to her bedside.

Watching.

Listening.

Learning her.

The wires.

The dressings.

The careful way she has to be handled.

It’s overwhelming.

Terrifying.

Nothing like what they imagined.

But somewhere in the middle of it—

Sid leans down close to her, voice soft enough that only she could hear if she understood.

“You’ve got a whole team already, kid,” he murmurs. “And you’ve got us.”

Kathy reaches over, resting her hand beside his.

“We’re not going anywhere,” she whispers.

And their daughter, their tiny, stubborn, incredibly here daughter breathes steadily.

A month later, the discharge doesn’t feel real.

Not at first.

There are too many papers. Too many instructions. Too many pauses where someone looks at them just a second longer than normal and says, “Call us if anything feels off. Even if you’re not sure.”

Kathy’s holding the baby when the nurse starts going over it all again.

“So—her shunt,” the nurse says gently, nodding toward their daughter’s head. “She had the VP shunt placed to manage the fluid in her brain. It’s working well right now, but you need to watch for signs that it might not be.”

Sid is already nodding.

He’s been listening to every word like it’s game film.

“What kind of signs?” he asks.

“In a baby this young—vomiting, especially repeated. Extreme sleepiness or difficulty waking her. A high-pitched cry that’s different from her normal. Bulging of the soft spot on her head. Rapid head growth. Irritability that you can’t settle.”

Kathy instinctively adjusts the blanket around her daughter, like she can protect her from all of it just by holding her tighter.

The nurse continues.

“And because of her Chiari II malformation, watch for any changes in her breathing—pauses, noisy breathing, trouble feeding, choking, anything like that.”

Kathy nods, eyes fixed on her baby’s face.

“Okay.”

“There’s more,” another nurse adds softly, stepping in with a small stack of supplies.

A stack is an understatement.

It’s bags.

Boxes.

Care kits.

“You’ll need to continue her catheterizations as instructed,” she says. “That helps her bladder empty safely. We’ve included everything you’ll need to start.”

Kathy’s throat tightens, but she nods again.

“And for her bowel program—your care team will help you build a routine as she grows.”

Sid glances at the supplies, then back at their daughter.

It’s a lot.

It’s so much.

But he doesn’t hesitate.

“Okay,” he says. “We’ll figure it out.”

The nurse smiles at him. “You will.”

By the time they’re actually walking out, Kathy feels like she’s carrying something made of glass and gravity at the same time.

Their daughter is strapped into the car seat—carefully positioned, extra padding to keep pressure off her back.

Sid checks the straps three times.

Then a fourth.

“Sid,” Kathy says softly, exhausted but amused.

“I know,” he mutters. “I just—yeah. Okay.”

He closes the car door like it might shatter.

The drive home is quiet.

Every little sound from the back seat makes Kathy turn her head.

Every breath.

Every shift.

“She’s okay,” Sid says gently, glancing at her.

“I know,” Kathy whispers. “I just… I want to see her.”

“Two minutes,” he says. “We’re almost there.”

When they pull into the driveway, neither of them moves right away.

Home.

It looks the same.

Exactly the same.

But it doesn’t feel the same.

Sid exhales slowly. “Okay.”

Kathy nods.

“Okay.”

Inside, everything is ready.

The bassinet.

The changing station.

The impossibly tiny clothes.

All of it set up weeks ago with excitement.

Now it feels different.

Heavier.

More real.

Kathy settles onto the couch carefully, cradling their daughter against her chest.

“She’s home,” she whispers, almost like she doesn’t believe it.

Sid stands there for a second, just looking at them.

Then he moves.

Not toward the couch.

Toward the hallway.

Kathy blinks. “Sid?”

“I’ll be right back,” he says, already halfway down.

She hears doors opening.

Closing.

Footsteps.

Then—

“…we’re gonna have to widen that.”

Kathy frowns. “What?”

Sid reappears, gesturing vaguely toward the front of the house. “The doorway—it’s not wide enough for a wheelchair.”

Kathy just stares at him.

He keeps going.

“And the front steps—we’ll need a ramp. Same with the back patio. And the yard—there are dips back there, we should probably level it out so nothing gets caught—”

“Sid.”

He stops.

Finally looks at her.

Their daughter is curled against Kathy’s chest, fast asleep, tiny hand tucked under her chin.

“She is one month old,” Kathy says gently.

Sid blinks.

“…I know.”

“She is not using a wheelchair tomorrow.”

“I know,” he repeats, softer this time.

There’s a pause.

And then Kathy smiles.

Because she sees it.

What this actually is.

“You’re already planning how she’s going to move through the world,” she says.

Sid’s shoulders drop just slightly.

“Yeah,” he admits.

Kathy’s smile widens, eyes shining.

“That’s… really sweet.”

He huffs out a quiet breath, rubbing the back of his neck. “I just—I don’t want anything in her way.”

Kathy looks down at their daughter.

At how small she is.

How new.

How completely unaware of every obstacle being mapped out ahead of her.

“She’s got time,” Kathy says softly. “We’ve got time.”

Sid nods.

Then walks back over, dropping down beside her on the couch.

He reaches out, brushing a finger gently over their daughter’s cheek.

“She’s still gonna run the place,” he murmurs.

Kathy laughs quietly. “Oh, absolutely.”

A small sound escapes the baby—just a sleepy little sigh.

And both of them freeze for a second.

Watching.

Waiting.

She settles again.

Kathy leans her head against Sid’s shoulder.

“We’ll learn everything,” she says. “All of it. The shunt, the routines, everything they told us.”

Sid nods, resting his head lightly against hers.

“Yeah.”

“And when she’s ready,” Kathy adds, glancing toward the hallway he disappeared down earlier, “we’ll figure out ramps and doorways and all of that.”

Sid smiles faintly.

“Deal.”

They sit there for a while.

Quiet.

No monitors.

No hospital noise.

Just the soft, steady breathing of their daughter between them.