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Since the moment they got that positive pregnancy test, Phil and Kristin have been so excited to be parents.
They have the beginnings of a nursery. They’ve bought baby clothes and a crib and even a couple of cute plushies, even though it’ll be ages and ages before the baby needs them. They’re ready.
But now here they are. Sitting in a cold impersonal room in the doctor’s office, staring at the ultrasound that was supposed to tell them the baby’s gender, staring at something very different. Something terrifying.
“It’s a condition called spina bifida,” the doctor is saying. “Likely myelomeningocele- this means that part of baby’s spine hasn’t formed normally, and part of the spinal cord is exposed.”
Kristin is gripping his hand so tightly, Phil can’t feel his fingers. He doesn’t care, because he can barely breathe.
“Is-” His voice sticks in his throat. “Will the baby- be okay?”
It’s such an inane question to ask. The baby’s not okay right now- part of the spinal cord exposed, he already has a pretty good idea of what that means.
The doctor hesitates. “There are… treatments,” he says. “But the quality of life your child will have… it might not survive to term. If it does, there’s a high chance of life-threatening complications. It might be better…”
Kristin inhales sharply. Phil squeezes her hand right back.
“Better if- if what?” He feels cold. It can’t be- he can’t really be suggesting they-
“You’re both young,” the doctor says, voice dripping with sickly pity. “You could have an abortion-”
Kristin makes a sound of pure grief and pain. The doctor ignores her.
“Try again in a few months- with proper precautions, there’s a very good chance you could have a healthy, perfectly normal baby.”
Phil loses anything that was left of his composure.
He doesn’t really realize he’s been yelling, that he hit the man, until someone is hauling him back. Phil falls into silence, breathing hard and glaring harder.
They get trespassed from the hospital.
Phil doesn’t give a flying fuck. Not after what that doctor said.
“We’ll find another doctor,” he says, starting the car. “Somebody who- who specializes in spina bifida. We’ll figure this out-”
“I can’t have an abortion,” Kristin whispers, shaky and thin. “Phil, I can’t- I don’t know how the hell we’re supposed to do this but I want him, I want him so much. Even if he’s- even if-”
Her voice breaks. He reaches across the center console and takes her hand, squeezing tightly.
“Whatever it takes,” he promises. And he means it- he wants this child, he knows they both want this child, no matter how hard their lives will be. No matter how hard their son’s life will be. “We- we’re gonna be okay. We’re all gonna be okay.”
Maggie, the first doctor they book an appointment with, is immediately kind, immediately sympathetic.
“I promise,” she says, almost the first thing she says to them, “we are going to do everything we can to help your baby.”
She lays out the options quietly, calmly. They can choose not to intervene- to wait for their son to be born and immediately rushed into a surgery to close the spine. Or, Kristin- and the baby- can have a surgery now, to repair as much of the damage as they can, and then treatment so he can be born closer to his due date.
She tells them that the fetal repair surgery carries risks for both Kristin and the baby, but that it will give the baby a better outcome long-term. That it will decrease the risk of him experiencing life-threatening complications.
“What other choice do we have?” Kristin whispers that night, lying in bed with her head on Phil’s chest, both their hands resting on her belly, covering their son. “What other chance does he have?”
“Are you sure?” His voice shakes. He can’t- he doesn’t want to risk her. Even for their baby. “I- all the risks to you, I can’t-”
“Phil-” Her voice catches. “Please, I can’t- I want our baby to- to have the best chance he can. I want him to be okay.”
“I don’t want to lose you,” Phil breathes. “Please, let’s- let’s think-”
“I have thought about it. I know- I know this is risky for me, but he- he needs this surgery. Phil, our son-”
He ducks his head, kissing her hair. Tears dripping down his face.
“Okay,” he whispers into the night. “Okay.”
“The surgery went just as expected,” Maggie says, smile warm and voice just as reassuring. “The surgeons were able to repair the defect, there were no complications at all.”
Kristin’s grip on his hand is weaker- she’s still a bit groggy from the anesthesia- but no less desperate than at any point in the last few days. “Is the baby okay?” she whispers, raspy and thin.
“Your baby is doing very well.” Maggie tilts the monitor towards them. “The device on your belly is a fetal heart rate monitor. His heart rate is around one-fifty, just what we like to see.”
Phil nods, gently pressing Kristin’s hand to his lips. Her fingers close on his briefly. “So- so he’ll be okay.”
“There’s still some damage,” Maggie says gently. “That’s unavoidable. But the surgery will keep it from getting worse, and once he’s born, he will be put under the care of an excellent team of specialists.”
“What, ah…” They’ve been avoiding the subject. Focusing on getting through just this one surgery, just this thing. Phil clears his throat. “What can we expect, after he’s born? What’s his- his prognosis?”
“It’s impossible to say anything for sure right now.” Maggie clasps her hands between her knees. “But given the location of your baby’s spinal damage, and the usual progression of this condition, you can expect him to have little to no use of his legs. He’ll need a wheelchair, or possibly crutches, but that’s far down the line. We have fantastic pediatric physical and occupational therapists who will be able to work with you and your son throughout his childhood to help him develop properly.”
“So he- he’ll have a relatively normal life?” Phil asks, chest hitching.
“It won’t be easy,” Maggie says, looking between them, meeting their gazes in turn. “Your son is going to need a lot of medical care, and a lot of care in general. But many people with spina bifida live full, happy lives, and we are going to do everything we can to make this possible for your son.”
Kristin squeezes his hand, glancing up at him with tears in her eyes. “He’s gonna be okay,” she whispers.
He’s going to be okay. They’re going to do everything they can to make everything okay.
“Now, I know we’ve already discussed this, but I’d like to go over your care plan again, okay?”
Phil nods gratefully- he hadn’t processed much of it the first time, too stressed about the surgery.
“Kristin, you’re going to stay here, on strict bed rest, for the next fifteen weeks. This will reduce the risk of complications and give your baby the best outcome.” Maggie shifts. “He’ll be delivered at thirty-seven weeks via C-section. He’ll immediately go to NICU for more treatment. He may need another surgery to repair any spinal damage they weren’t able to during this procedure, but we’ll cross that bridge when we come to it, all right?”
Kristin nods, weakly squeezing Phil’s hand again. “Thank you,” she whispers. “Thank you for fighting for him.”
“He’s fighting for himself,” Maggie says with a smile. “You have a very strong little boy.”
Sleeping on the pull-out bed in the corner of Kristin’s hospital room does absolutely nothing for Phil’s back, and almost as much for his energy levels, but he’s not leaving her side if he doesn’t have to.
So he’s there when, nearly a week after the surgery, Kristin gasps out his name.
He’s at her side in seconds, taking her hand, glancing worriedly at the monitors. “What is it, is the baby-”
“He’s moving.” She grabs his other hand, pulling it to rest on her belly. For a second Phil just waits, breathless, but then-
“Oh,” he gasps, feeling something pressing up against his hand. “Oh my god that’s our baby-”
“He’s been moving a little for- for a couple weeks now- slowed down after the surgery but they said he might-” Kristin’s breath hitches, her hand still pressed over Phil’s. “I couldn’t feel him from the outside before.”
“He’s moving,” Phil whispers. “That’s our son.”
“Wilbur,” she whispers right back. “I- I want- I want to name him Wilbur.”
“Like- like the pig from Charlotte’s Web?” Phil glances up with a breathless laugh.
Kristin shakes her head. “It means resolute,” she whispers. “He- he’s so strong, Phil. He’s so strong, he’s already survived so much, and- and he hasn’t even properly been born yet. He’s going to be something, Phil, I just know it.”
“Wilbur,” Phil murmurs, testing the name. He leans over, pressing a gentle kiss to the place where their child is still moving in there, fighting so hard to stay alive. “Hi, Wilbur,” he says, so softly. “We’re so proud of you, baby. You keep fighting for us, okay? You’re so, so strong, and I promise, we will keep fighting for you for the rest of your life, but you have to fight too, okay?”
Less than ten minutes after he’s born- before either of them has a chance to hold him- Wilbur is rushed into another surgery.
Kristin is asleep, still recovering, when a nurse brings Phil to see his son in the NICU.
He’s so, so tiny, lying in that incubator, curled on his stomach with his legs tucked up to his sides. There are so many wires and tubes on him- a thick bandage over his lower back- a far-too-big diaper on him, a thick band around his wrist.
“Oh my god,” Phil breathes, hands reaching for his son before he stops himself, pulling them back. “He’s so- so little.”
“The surgery went very well,” the nurse says gently. “The surgeons are confident they’ve repaired the damage as well as it can be for the time being. There’s some concern about hydrocephalus, but we’ll monitor him carefully and let you know if he needs any kind of intervention.”
“So- so he’s okay? Right now?”
“He’s very small, and very fragile, but he’s doing very well. Your little boy is a fighter.” The nurse nods towards the incubator. “Would you like to touch him?”
Wilbur’s skin is so soft, so fragile. Phil can barely breathe, just staring at his son. Thumb stroking over the bit of brown fuzz on his head, fingers resting lightly on his back, feeling each quick, short breath.
“Hi, Wilbur.” Phil blinks away tears as Wilbur reacts, eyes blinking and mouth opening and closing and one tiny fist flailing out to the side. “It’s me, your dad. Look at you, oh, baby. You’re so strong. You’ve been so, so strong.”
Phil knows- they’ve known for a long time that Wilbur’s life won’t be easy. He’ll need a lot of care, more surgeries and procedures and a lot of careful monitoring. Even if he does learn to walk, he’ll probably always need support in that, in many other ways.
But right now, staring at him, Phil knows it’s worth it. Everything they’ve been through, all the worry and the pain and the stress, it’s all been worth it.
“Your mum and I love you so, so much, Wilbur.” Phil leans as close as he can, stroking his thumb gently along Wilbur’s cheek, under the tape holding his feeding tube in place. “We’ve been waiting for you, little love. We’ve been fighting so, so hard for you, and I swear, on everything I am, you are going to be okay.”
~~~
Wilbur is fourteen years old, and learning to walk, and Kristin is placing a little piece of plastic in Phil’s hands.
He just stares at the blue plus sign, struggling to process it.
“What are we going to do?” Kristin whispers, sinking down on the couch beside him. “Phil, what if-”
“No- no, just-” Phil looks away briefly, covering his mouth with one hand. “Just- a second.”
He feels like the worst fucking husband on the planet for saying it. She needs him, she needs him to be strong right now, and he can’t. He doesn’t know how. He suspects she’s thinking the same things as he is.
What if this baby has spina bifida too?
Wilbur is worth it, he has always been worth it, but Phil doesn’t know if they could do it a second time.
Finally he takes a deep breath, closing his eyes for a second, steadying himself.
“It’s going to be okay,” Phil says, dropping the test on the coffee table and taking Kristin’s hands. “We- we’ll figure it out.”
“What if- Phil, I don’t know if-” Her breath hitches, and she looks down, gripping his hands. “I can’t go through that again,” Kristin whimpers. “I just can’t. I love Wilbur, I adore him with my whole heart and you know that, but I can’t go through another pregnancy like that.”
“We’ll figure it out,” he promises, tears filling his own eyes as he pulls her into his arms. “It’s- this baby probably won’t have spina bifida too, it’s so rare-”
“I can’t go through it again,” she sobs, breathless and shaky. “I just can’t.”
“You won’t have to. We- we can figure it out. It’s gonna be okay.”
“What about Wilbur?”
Phil runs his fingers through his hair. He knows- he knows what she means, before she’s even said it. They’ve been having this conversation, or variations of it, for a long time now.
“I think… it’s time.” Time to stop pushing for the next treatment, the next potential improvement. “He’s- he’s walking, he’s as healthy as he’s ever been… he’s not gonna be normal but we- we knew he never would be.”
Kristin nods, staring at the floor. They’re waiting, both trembling and silent, to be taken back for the twenty-week scan that will tell them, for sure, if this baby has spina bifida too. The other tests have been negative, but as Maggie has gently reminded them multiple times, that doesn’t mean for sure that this baby is going to be healthy.
“He’s still… I mean, he’s always going to need care, but that-” Kristin shakes her head slightly. “Just… getting him to treatments, and staying with him in the hospital, and taking care of a new baby at the same time… I don’t see how we could manage it.”
“Yeah,” Phil says softly. “Just- god, I thought…”
They’ve been clinging to that hope for so, so long. Saying someday, someday they’ll find another treatment. Hoping for a miracle that could fix Wilbur’s back, let him walk and live a normal life. Hoping that each surgery and treatment would be the one to produce even the smallest improvement.
“I know.” Kristin squeezes his hand. “There’s not… he’s not going to get any better.”
And oh, how it hurts. How it breaks his heart to finally accept it, that Wilbur is never going to get much better than he is now. He’s learning to walk with crutches; he has as much mobility and independence as he ever will, probably. He’s relatively healthy, or as healthy as he can be at any rate.
It’s not the life they hoped Wilbur would have. It’s not the life they tried to give him.
It’s the life they managed to build for him. It’s the best life he can have.
“He’s happy, I think,” Phil whispers. “He’s happy, and he’s healthy, so he- he’ll be okay.”
An hour and a half later, they’re sitting in Wilbur’s hospital room while he sleeps off the sedation from his last procedure, just clinging to each other and crying.
The baby’s okay. He’s okay. Maggie had told them with a glowing smile- there’s no indications of any spinal damage, no indications of any abnormalities at all.
Their baby is okay. He’s healthy. He’s going to be okay.
“He’s okay,” Phil breathes, one arm around Kristin’s shoulders and his other hand resting on her belly. “He’s okay. He’s okay.”
“He’s okay,” she repeats, soft and whimpering, pressing her face into his shoulder. “He’s going to be okay.”
It’s not going to be like with Wilbur. They’re not going to have a baby who has to spend weeks in the NICU, who needs surgery after surgery after surgery just to stay alive, just to have a chance at any kind of a life.
And they both love Wilbur, of course they do. They fought to give him a good life, they love him and they would never trade him away for anything, but it’s still a relief that they won’t have to go through it again.
They sit there, crying in sheer relief, until there’s a soft murmur from the bed. Phil wipes his face dry, squeezes Kristin’s hand, and moves to go to Wilbur.
“’ad,” Wilbur mumbles, grabbing at his hand. “S’okay… m’okay…”
Kristin laughs tearfully, coming over to take his other hand. “Oh, sweet boy,” she murmurs, smiling, brushing Wilbur’s hair back. “You’re okay, baby. Everything is okay.”
He blinks between them, bleary-eyed and so sleepy and still with that look of worry plastered across his face. “Y’re cryin’,” he whispers. “’s the baby…”
“Your little brother is just fine,” Phil says soothingly. “Everything’s okay, Wil.”
A slow, sleepy smile spreads over Wilbur’s face. “’s Tommy.”
“Yeah,” Phil says with a bit of a breathless laugh. Wilbur has been so excited about having a little sibling, so they told him he could pick the first name. He’d told them his ideas a few weeks ago, so shyly- Tommy, or Tallulah. “Yeah, Wil, it’s Tommy.”
“An’ he’s not…” Wilbur blinks slowly, frowning a bit. “S’he… okay? ‘is spine…”
“His spine is okay,” Kristin says soothingly. “He’s just fine.”
“Good.” Another long, slow blink. “Don’ wan’ him to hafta… be like me.”
Phil meets his wife’s gaze over Wilbur’s head. That’s a conversation they’ll have to have at some point- but not now, not when Wilbur is still half asleep and groggy from the meds.
“Tommy is just fine,” Kristin repeats, leaning down to kiss Wilbur’s forehead. “Why don’t you get some more sleep, sweetheart?”
“Wilbur,” Phil asks softly, late the next day, “are you… how do you feel about all this?”
Wilbur presses his thumb on the edge of the tape holding his IV in place, pressing the curling edge back down. “You mean about having spina bifida?” he asks, not meeting Phil’s gaze.
“Yeah.” Phil hesitates. “And… and all the surgeries and shit.”
He shrugs one shoulder. “I mean, it’s not a fuckin’ picnic.”
Phil separates Wilbur’s hands, squeezing them gently, gently. “Wilbur, sweetheart-” He doesn’t know what he means to say next. I’m sorry. I love you. Please tell me the truth. Do you wish you hadn’t been born.
“I don’t…” Wilbur speaks slowly, quietly. Still not looking at him. He’s so small. So small, sitting in his hospital bed, bandages around his head and on his stomach, still resting after a routine shunt replacement.
“I’m okay with… being disabled,” Wilbur says. “I’ve been okay with it for a while. I was resigned to, like, the wheelchair, and all that. With that being my normal. And I like doing the stuff that Puffy’s teaching me. Walking, and all that. But I…”
Phil waits, holding his hands. Glad that for right now, it’s just the two of them, in the quiet; that Wilbur loves and trusts them, that he has never felt like he needs to hide anything from them.
Finally Wilbur looks at him, brown eyes swimming with tears. “I don’t want the baby to be like me,” he whispers. “I wouldn’t wish this on anybody. I don’t want Tommy to have to go through surgeries and hospital stays, I don’t want him to ever hurt like this.”
Phil understands that. He feels sick, though, at Wilbur’s words.
“Wil, have we…” He swallows harshly, looking away for a second. “Has it been too much?” he whispers, guilt pooling in the pit of his stomach. “Have we pushed too hard for- for all the surgeries and treatments?”
They never stopped to really ask what Wilbur wanted. He’s never protested against a treatment, he’s never asked not to have a surgery, he’s never tried to get out of physical therapy appointments or- or any appointments. But they just took it for granted that he would be okay with it, that he would want to take these chances on more mobility and less pain.
“I… I don’t…”
“It’s okay if- if you feel that way.” Phil’s chest hitches with a near sob. “I promise, whatever you feel is- it’s okay.”
I’m sorry. I love you. Please tell me the truth.
“Sometimes,” Wilbur breathes, staring away again, “sometimes, I…”
“I’m so sorry.” Phil buckles under the weight of it, putting his head down on the bed beside his son. Fighting away tears, not wanting to cry in front of Wilbur, who is so young. So hurt. “Wilbur, I’m so sorry, baby, we didn’t- I’m so sorry.”
“It’s okay. It’s okay, Daddy.” Wilbur’s hand touches his head after a second, fingers running almost hesitantly through Phil’s hair. A sweet, gentle imitation of the way that Phil comforts him. “I know you just wanted to help me. I know you and Mom have always just been trying to do what’s best for me. I’m not upset with you, Dad, I never have been. It’s just…”
Phil lifts his head, taking Wilbur’s hands again. Clasping them in one of his, cupping his son’s cheek with the other. Wilbur tilts into the contact, eyes closing.
“It hurts, sometimes,” he breathes out. “I just get so tired. Of all of it.”
Phil exhales shakily, leaning closer to kiss Wilbur’s forehead. “What do you want, Wil? Going from here, what… what do you want?”
Wilbur sniffles, looking away. “I want… I want this all to stop,” he whispers, and oh, Phil’s heart just breaks. “I don’t want any more surgeries unless I need them. Like to fix the shunt. I just… I just want to live, Dad. I don’t want to be a hospital kid anymore.”
“Okay.” Phil kisses his forehead again. “Okay, sweetheart. You can have it,” he promises. “You can have anything, Wil.”
Wilbur glances back at him, a fragile kind of smile on his face. “Even ice cream for dinner?”
Phil chuckles softly. “Okay, maybe not anything.”
Wilbur giggles, shaky and small. Phil smiles with him, resting their foreheads together.
“I’m sorry we hurt you, Wil,” he murmurs after a minute, when the quiet joy has faded back into solemnity. “We never wanted that.”
“I know.” Wilbur just smiles again, his expression so peaceful. “I’m not upset with you or Mom. I know you were only ever trying to help me.”
Tommy is born at thirty-seven weeks- this more for Kristin’s health and safety than for his- big and strong and absolutely perfect.
Everything is so much less complicated this time- and yet, a bit more, at the same time. Tommy is healthy, Tommy hasn’t been sent to the NICU for even a minute, but Phil can’t spend all his time with them, because there’s Wilbur to be thought of. Wilbur, who still needs so much care at home, and whom Phil trusts to no hands but his wife’s, or his own.
Tommy is only a few hours old when Phil brings Wilbur in to meet him.
Wilbur goes to his mom first, slow and shambling and awkward on his crutches. “Are you okay?” he asks, leaning heavily on the bed.
“Oh, sweetheart- Phil, help him up here.”
He hesitates, coming over to support Wilbur. “You’re sure-”
Kristin rolls her eyes at him. “This bed is big enough for three people- not that that’s an invitation,” she adds, glaring at Phil.
He smiles, lifts Wilbur up beside Kristin. Wilbur leans back against the bed, huddling against her side.
“Are you okay?” he repeats, insistent and soft. “You look tired, Mom.”
“I’m okay, sweet boy.” She leans over a bit to kiss the top of his head, wincing slightly. “How are you?”
“You’re the one who just had surgery this time.” Wilbur takes the hand she offers him, playing with her fingers almost absently.
“Well, I’m just fine.” Kristin meets Phil’s gaze for a second, nodding towards the warmer where Tommy is just starting to stir. “Would you like to meet your baby brother?”
Phil lifts Tommy so gently, so carefully. It’s almost strange, how much sturdier Tommy feels in his hands, despite still being so small and fragile. Wilbur was so delicate- with Wilbur, they were always afraid to hold him wrong, move him wrong, afraid to make something worse.
Wilbur gasps as Phil gently sets Tommy into his lap. “He’s so little,” he breathes.
“He’s a bit bigger than you were, when you were born,” Kristin says. She strokes one finger over the dark fuzz of Tommy’s hair.
“And he- he’s okay?” Wilbur hovers his hands over Tommy, as if he’s afraid to touch him. “His spine-”
“There’s nothing wrong with Tommy’s spine,” Phil promises, sitting on the bed beside Wilbur’s legs and gently guiding Wilbur’s hands down to rest on Tommy’s tiny body. “He’s okay, Wil.”
Tommy’s eyes open, legs kicking as he whines out little disgruntled noises. Wilbur gasps again, eyes swimming with tears.
“Oh- oh, hi, Tommy,” he breathes. “Hi, I’m Wilbur, I’m your big brother.”
Tommy wails, utterly unimpressed, apparently. Kristin laughs softly, rubbing his head. “Sounds like someone is hungry,” she murmurs.
“Aw, Tommy.” Wilbur pouts at him. “Do you not like me?”
“He’s a baby, mate,” Phil says, chuckling softly. “Right now all he really knows is Mom.”
Wilbur tilts his head, staring at Tommy’s little face. “No,” he says after a minute, “he’s definitely got a grudge. He’s decided already.”
Phil laughs. Just the concept of it is ridiculous- a newborn, hours old, quite literally cannot have a grudge against someone- but it eases the last lingering tensions.
Both of his boys are okay.
~~~
four years later
While Niki checks out Techno in the med bay, Phil sits down with his wife.
“Techno was born with myelomeningocele,” he says. “We don’t know how much care he’s going to need, what his mobility level is-”
“We’re taking him,” Kristin says immediately.
He exhales shakily- he’s gotten attached, during the time he’s spent watching over Techno. “You’re sure?”
“We’re the only people on this base who are really equipped to take care of him. Of course we’re taking him.” She frowns. “Why wouldn’t I say yes?”
“I- I dunno, just-” Phil rests his head in his hands. “Before Tommy, you said- you couldn’t do it again-”
Kristin takes a deep breath, lets it out slowly. “Phil, I… I meant that I couldn’t… I couldn’t go through another pregnancy like that. All that fear and stress… Carrying another baby I knew would be born sick and in pain. Feeling like it was somehow my fault-”
Phil’s heart just cracks. “Oh, Kris-”
She shakes her head. “That’s- we don’t need to talk about that right now. The point is, this isn’t like that. Techno’s here, now, and he needs us.”
“Okay.” He takes her hands, squeezing them gently. “Just… we probably should talk about that at some point, you know-”
“Sometime. Just… not now.”
“Not now,” Phil agrees, voice soft.
“Right now,” Kristin says, stronger, “we should go clear out the spare room and set it up for Techno. He’s never had a proper bedroom before, you said?”
Phil nods. “Yeah. Yeah, we should probably get him some stuff.”
“Mm, right. I’ll take the boys out shopping at some point, maybe if Techno needs space to settle in at some point-?”
“Yeah- yeah, that might be good. He’s never… I think I was one of the first people he met besides his parents and one other doctor.”
Kristin gasps softly. “Oh, the poor thing, he must be so overwhelmed.”
“It’s a lot, for sure.” Phil scrubs his hands over his face. “Just… I don’t know how the hell he’s supposed to adjust to this. People, and- and the entire world.”
“He’ll have you. All of us.” Kristin takes his hands, squeezing them gently. “Techno is going to be okay.”