投稿者: itochan_story

What the Doctor Told Us About Her Condition

🇯🇵Read in Japanese

Throughout my pregnancy, the doctors had told us the same thing again and again.

“We’ll know more once she is born.”

There was only so much they could tell from an ultrasound, and although we already knew that her bones were shorter than expected and that there was a strong possibility of an underlying condition, no one could tell us exactly how severe her symptoms would be, how well she would be able to breathe on her own, whether she could see or hear, or what kind of treatment she might need after birth.

So somewhere inside me, I think I had come to believe that once she was born, we would finally know.

I imagined that when January 5 arrived and our daughter entered the world, the long period of uncertainty we had lived through during the pregnancy would finally come to an end and, whether the answers were good or bad, we would at least have answers.

But when she was actually born, I realized that it didn’t work that way.

Her birth did not suddenly reveal everything we had been waiting to know; instead, it made new examinations possible for the first time, and every result seemed to lead to another question, another test, another piece of her body and her future that we still needed to understand.

In the NICU, one of the doctors prepared a single A4 sheet of paper and used it to explain our daughter’s condition to us.

On that sheet was the long name we had already heard many times during the pregnancy—

congenital spondyloepiphyseal dysplasia.

Along with the name of the condition, the doctor had organized what they currently knew about our daughter, what might happen as she grew, and what kinds of examinations and treatments could become necessary.

The doctor did not say,

“There is absolutely no doubt. This is the diagnosis.”

But after considering the examinations performed after birth together with the characteristics of her body, we were told that they believed it was almost certainly congenital spondyloepiphyseal dysplasia.

It was not a new name to us.

We had heard it many times during the pregnancy, I had searched for information about it myself, and I thought I had already prepared myself for the possibility that this would be her diagnosis.

And yet, seeing those words written on a piece of paper in front of me, knowing that everything on that page was describing the little girl now sleeping in the NICU, made the same diagnosis feel completely different.

The doctor went through the page slowly, explaining each part to us.

We were told that as our daughter grew, she was likely to have short stature, and because we had been told throughout the pregnancy that her long bones were shorter than expected, this was something we had already begun to prepare ourselves for.

If she was small but healthy, I thought, then perhaps being small could simply become one part of who she was.

That was something I felt I could learn to accept.

But after she was born, we learned that her height was only one part of the story.

From the moment she entered the world, breathing on her own had not been easy for her, and depending on how her condition developed, we were told that she might need respiratory support to help her breathe.

As the doctor explained this, I kept thinking about the tiny movement of her chest that I had watched so many times in the NICU.

A small rise.

A fall.

And then another rise.

Breathing was something I had gone through my entire life without thinking about, something so automatic that I had never considered it an achievement at all, and yet from the day she was born, my daughter had been working so hard simply to keep doing it.

For the first time in my life, I began to understand that even something as basic as taking a breath was never something we should assume would come easily.

There were still questions about her eyes as well.

At that point, we did not know how much she could see, and the doctors explained that we would need to continue examining her vision as she grew.

The same was true of her hearing.

We did not yet know how much she could hear, and because hearing loss could occur with this condition, it was something that would need to be monitored carefully over time.

Whenever I looked at her face, I noticed those big eyes of hers and remembered how my husband and I had laughed at one of her ultrasound pictures during the pregnancy.

“Aren’t her eyes a little too big?”

Now those same big eyes were right in front of us, but I still didn’t know how much of our faces she could actually see.

I would say her name and speak to her, but I didn’t yet know how much of my voice was reaching her.

During the pregnancy, we had kept hearing,

“We’ll know once she is born.”

But after she was born, those words became,

“We’ll know as we continue testing.”

That was when I began to understand that giving birth had never been the day when all of our uncertainty would finally be resolved.

It was simply the beginning of truly getting to know our daughter’s body.

There were also things we could only confirm after she was born.

One of them was her cleft palate.

We had been told during the pregnancy that there was a possibility she might have one, but there had been no way to know for certain until birth.

After she arrived, we learned that she did.

Because of the opening in the roof of her mouth, creating the suction needed to drink milk was difficult, which meant that feeding by mouth would not come as naturally to her as it does for many babies; she would need to practice little by little, and a special oral appliance would also be made for her.

Before becoming a mother, I had never questioned the image I had in my mind of feeding a newborn.

A baby gets hungry and cries, the mother picks her up and gives her milk, and when her stomach is full, she falls asleep.

I had simply assumed that this was how it would begin.

But for my daughter, even something as simple as drinking milk by mouth was not something that would necessarily happen naturally from the beginning.

It was something she would have to learn.

Her feet were another concern.

Both of her feet were severely turned inward, and from the first time I was able to look carefully at her tiny body after birth, I found myself wondering whether she would someday be able to stand on those feet, and whether she would be able to walk.

The doctor explained that they would continue to watch her development and the condition of her feet as she grew, and that surgery might eventually be necessary.

She had only been alive for a few days.

She had never even been home.

She was only beginning to learn how to drink milk by mouth.

And yet the word “surgery” was already part of the conversation about her future.

That frightened me.

But the doctors in the NICU did not give us that single explanation and then leave us alone with it.

Our daughter was undergoing different examinations and assessments almost every day, and because each new result could change what they knew about her current condition and what needed to happen next, the doctors met with us roughly every three days to explain the latest results, how she was doing, what they had learned since the previous conversation, and what tests or treatments were planned next.

Something that had still been unknown during one conversation might become a little clearer by the next.

And sometimes, learning one thing simply revealed another question that needed to be answered.

Each time, we listened.

We asked questions about the things we did not understand.

And then we went back to our daughter.

Looking back now, I think it meant a great deal to us that no one tried to hand us her entire future all at once.

Instead, the doctors told us what we needed to know about our daughter at that moment, one step at a time.

Of course, every explanation brought new worries with it.

I wondered what would happen with her breathing, how much she could see, whether she could hear us, whether she would learn to drink milk by mouth, whether she would someday be able to walk, how many hospital visits would become part of her life, what treatments she would need, and how many surgeries might be waiting somewhere in her future.

The more we learned, the more I understood just how much about her life was still unknown.

And yet, strangely, I was not the same person I had been during the pregnancy.

Back then, I had imagined the future of a daughter I had never met, searched the name of her possible condition online, frightened myself with things that had not happened, and sometimes turned possibilities into realities inside my own mind before I even knew what our reality would be.

But now she was here.

She had a name.

I knew her face.

I knew that her eyes and eyebrows looked like her dad’s, and that when she slept, she somehow looked even more like him.

I knew how light she had felt the first time I held her.

I knew the warmth of her body in my arms.

And more than anything, I knew what it looked like to watch her tiny chest move as she fought to breathe and live, surrounded by machines and wires.

So even when the doctor’s explanations frightened me, part of me kept coming back to the same thought.

We have to do this.

I have to protect her.

No matter what happens, I have to raise her, and I have to become strong enough to do whatever this child needs.

At first, I truly thought,

I have to devote my life to raising this child.

But as I spent more time beside her in the NICU, looking at her face, something about that thought slowly began to change.

Of course I had to raise her.

I was her mother, and protecting her was part of being her mother.

But maybe that wasn’t the whole story.

Maybe I wasn’t going to be the only one helping her grow.

Maybe, as she grew, we would grow with her.

She had only been alive for a few days, and already she had shown me that so many things I had once considered ordinary were never guaranteed at all.

Breathing, holding your baby, drinking milk by mouth, seeing the faces of the people who love you, hearing their voices, standing on your own feet, taking your first steps—before she was born, I had never stopped to think about how extraordinary any of those things really were.

Now I found myself thinking about every one of them.

Maybe living beside this little girl would allow me to see things I had never been able to see before.

Maybe she would teach me to notice things I had once passed by without a second thought, and maybe our understanding of life itself would slowly change as she grew.

That did not mean I had suddenly accepted everything with a smile.

I was still frightened of the eye examinations and the hearing tests, still worried about her breathing and feeding, still afraid of what might happen with her feet and of the surgeries she might need someday.

There were endless things I could worry about if I allowed myself to look too far ahead.

But I was beginning to understand that I did not need to know everything today, and I did not need to accept her entire future all at once.

What we learned today, we could think about today.

When the next test gave us another answer, we could think about that then.

If she learned to do something new, we could celebrate it together.

If something did not go well, we could sit down with the doctors and nurses and figure out what to do next.

Just as the doctors gathered the newest information and explained it to us every few days, perhaps we did not need to carry the weight of our daughter’s entire life at once.

We only needed to face what was in front of us.

One thing at a time.

The long name that had frightened me so much during the pregnancy—

congenital spondyloepiphyseal dysplasia—

was slowly beginning to mean something different to me.

It was a condition our daughter would live with, and there was no doubt that it would affect many parts of her life.

But it was not everything she was.

She had her father’s eyes and eyebrows.

She looked even more like him when she slept.

She was warm when I held her.

And inside that tiny body, she was working hard to breathe and live another day.

Beyond the name of the condition,

there was Ito-chan.

And so I began to change the words I had been telling myself.

Instead of,

“I have to devote my life to raising this child,”

I began to think,

“Let’s grow together.”

I still didn’t know what was waiting for us.

There would be tests, results, more tests, moments of relief, and probably many moments of fear.

But somewhere along the way, as we walked beside our daughter, I believed that we would begin to notice things we had never noticed before, learn things we had never known, and slowly grow alongside her.

Maybe that was enough.

Ito-chan,

at that time, we knew almost nothing about the future waiting for you.

But maybe we were never supposed to know everything from the beginning.

We could learn one thing at a time.

One day at a time.

And while you grew,

we could grow beside you.

That day in the NICU, as I looked at the single sheet of paper the doctor had prepared and listened to everything they could tell us about a future still filled with unknowns, I slowly began to believe that maybe this was how we would move forward—

not by knowing everything,

but by learning it together.

The First Time I Held You

🇯🇵Read in Japanese

The night you were born, your tiny body was surrounded by more wires, tubes, and monitors than I could understand.

Something to help you breathe.

Something to watch your heart.

An IV.

Heart-monitoring leads.

And a tube that would help you receive milk.

At the time, I could not understand exactly what every single thing was for.

All I could see was my tiny daughter, with lines and tubes extending from almost every part of her body.

And that still frightened me.

But as I stood there looking at her face, I slowly began to notice other things too.

“Her eyes and eyebrows are just like Dad’s.”

Everything else seemed to look more like me.

And when she was asleep, she looked especially like my husband.

During the pregnancy, we had looked at her ultrasound pictures and wondered,

“Who do you think she’ll look like?”

Back then, she had existed only in grainy black-and-white images on a screen.

Now she was right in front of us.

Her eyes were her dad’s.

Her eyebrows were her dad’s.

Her sleeping face was definitely her dad’s.

And maybe the rest was mine.

Thinking about those little things somehow helped me see beyond all the medical equipment.

Little by little, I began to see not just a baby in the NICU—

but our daughter.

She was cute.

I knew that now.

But “cute” was never the only feeling I had.

Fear was always right beside it.

Is she breathing okay?

Is she in pain?

Are those numbers normal?

What was that sound?

Every time one of the machines made a noise, my attention immediately snapped toward it.

Even when I was simply standing beside my daughter, part of me was always tense.

Then came the next day.

At around three in the afternoon, one of the nurses asked me,

“Would you like to hold her?”

It would be the first time.

The first person to truly hold our daughter.

The nurse wanted that person to be me.

Her mother.

I think there was a kindness in that decision—a quiet wish from the nurse that the first arms to hold this little girl would be her mother’s.

They placed her in my arms.

There were still so many things attached to her body.

I could not simply scoop her up the way I had imagined holding my newborn.

We had to be careful with the tubes and wires.

With the nurse’s help, her tiny body was gently placed into my arms.

She was light.

And warm.

I had wanted to hold her from the moment she was born.

I had touched her the day before.

I had seen her face.

But touching your baby and holding your baby are completely different things.

She was in my arms.

My daughter was finally in my arms.

And the moment that became real to me, I cried.

Finally.

I could finally hold her.

After carrying her inside me for all those months, I could finally wrap my own arms around her.

And she was breathing.

Working so hard just to breathe.

I watched her tiny chest rise and fall.

Something so ordinary.

Something most of us never even think about.

And yet my daughter was putting everything she had into doing it.

I held her and cried.

I was happy.

I was overwhelmed.

I was worried.

I was scared.

It was probably all of those things at once.

When she was born, my emotions had not been able to catch up with what was happening.

Doctors and nurses had immediately surrounded her.

I could not hold her.

And then she was taken to the NICU.

But now she was here.

In my arms.

The daughter I had carried inside me was really here.

“You’re doing so well.”

That was what I wanted to tell her as I looked down at her tiny body.

After me, my husband held her too.

Watching our daughter in his arms felt strange in the most beautiful way.

Until the day before, she had been inside my body.

My husband could only touch her through my belly.

Now he was holding her himself.

Then I held her again.

My husband stood beside us, and someone took a picture of the three of us together.

I was holding our daughter.

My husband was beside me.

And between us was tiny Ito-chan.

Our first photograph as a family of three.

It was not taken in our home.

It was not even taken in an ordinary hospital room.

It was taken in the NICU.

There were still wires and medical equipment attached to our daughter’s body.

It was probably very different from the first family photograph I had once imagined.

But none of that mattered.

That photograph was ours.

It captured the moment when the three of us truly began to feel like a family.

I was so happy.

For the first time, I think I really understood—

there are three of us now.

I remained in the hospital for about three days after giving birth.

During that time, whenever I was allowed into the NICU, I stayed with my daughter for as long as I could.

My own body was still recovering from childbirth.

I was exhausted.

But whenever I was alone in my hospital room, I wanted to see her.

What is she doing right now?

Is she sleeping?

Is she breathing okay?

Is she crying?

My mind always returned to her.

So I went back to the NICU.

Whenever visiting time began, I went to her.

At night, I stayed as long as I possibly could.

I would think,

I should probably go back now.

But then—

just a little longer.

Five more minutes.

Just a little longer.

I stayed until almost the very last moment I was allowed to be there.

I hated leaving her.

Before she was born, we had been together twenty-four hours a day.

When I slept.

When I ate.

When I took a bath.

She was always there, inside me.

And then she was born, and suddenly there were rules about when I could see her.

That felt lonely.

My husband came to the hospital every day too, even while he was working.

He would finish work, come to the hospital, see our daughter, and then go home again.

During the pregnancy, he had driven me to this hospital again and again.

Now he was making the journey to see the daughter who had finally been born.

Whenever I watched her sleeping in the NICU, I thought,

She really does look like her dad.

Especially when she slept.

She looked so much like him.

Those little discoveries made me happy.

Her eyes are Dad’s.

Her eyebrows are Dad’s.

Her sleeping face is Dad’s.

Maybe this part is mine.

In between all the conversations about illness and medical care, we were beginning to have ordinary moments as parents.

But the fear never completely disappeared.

In some ways, the more I loved looking at her, the more frightened I became.

What is going to happen to her?

Will she grow?

Will her breathing be okay?

What will happen with her feet?

When will she be able to come home?

She was precious to me.

And because she was precious, I was afraid of losing her.

Love and fear seemed to exist side by side.

There was something else I began to notice during those days in the NICU.

The nurses.

I was amazed by them.

They watched the monitors connected to these tiny babies while caring for each child with extraordinary attention.

When a baby cried, they spoke gently.

They noticed the smallest changes.

When parents looked frightened or confused, they explained things in a way we could understand.

I felt as though they were not treating our daughter only as a patient.

They were treating her as a baby.

As a little person.

Watching them care for her saved me in ways I did not fully understand at the time.

And, of course, our daughter was not the only baby in the NICU.

There were many others.

Babies who were unbelievably small.

Babies connected to machines.

Babies fighting their own battles for reasons I did not know.

And there were families who came to see them.

During my pregnancy, I had sat in the waiting room of this same large hospital and watched many different families.

I remembered seeing people crying and thinking,

Maybe one day we will be on that side too.

And now, I was.

I was inside the NICU.

But once I was actually there, I realized that “this side” was not what I had imagined.

These were not simply “poor babies.”

They were babies living with everything they had.

And around them were people doing everything they could to protect those tiny lives.

Until then, somewhere inside me, I had believed there was a normal way for life with a baby to begin.

A baby is born.

The mother holds her.

The baby drinks milk.

The family goes home together.

And then life as a family begins.

I had assumed those things were ordinary.

Almost automatic.

But in the NICU, I learned that there are many different ways for a family’s story to begin.

Things I had always thought were ordinary were not ordinary at all.

Breathing.

Crying.

Holding your baby.

Taking a photograph together as a family.

Simply being alive.

Maybe every one of those things was extraordinary.

Only a few days had passed since my daughter was born.

And yet I already felt as though something inside me had begun to change.

My idea of what was “normal” was slowly breaking apart.

And strangely, that was not only a sad thing.

It felt more like I was beginning to see things that had always existed but that I had never noticed before.

My tiny daughter, working so hard to breathe.

Me, crying as I held her for the first time.

My husband standing beside us.

And our first photograph as a family of three.

Whenever I look at that photograph, I still think about that day.

Maybe that was the moment we truly became

a family with a baby.

It was not the beginning I had imagined.

But it was our beginning.

Ito-chan.

The day I held your tiny body for the first time, I still knew almost nothing about your condition.

I did not know what would happen next.

I was still carrying so much fear.

But as I held you in my arms and watched you work so hard just to breathe,

I slowly began to understand one thing.

This is our daughter.

And from here,

we are going to live this life with her.

The Day You Were Born

🇯🇵Read in Japanese

She was born.

After what felt like an endless series of pushes, our daughter finally came out with the help of vacuum-assisted delivery and the doctors.

The first thing that caught my attention was the shape of her head.

Because of the vacuum-assisted delivery, her head looked incredibly long and stretched.

She looked very different from the baby I had imagined all those months while staring at her ultrasound pictures.

And then—

she cried.

I heard her voice.

How many times had I wished for that during the pregnancy?

Please breathe.

If you can, please let me hear your voice.

The daughter I had spent months making those wishes for was right there in front of me, crying.

“She cried.”

That alone gave me some relief.

But her breathing looked difficult.

Almost immediately, doctors and nurses gathered around her.

One thing after another was attached to her tiny body.

I lay there watching everything happen.

She had cried.

She had made it into the world.

And yet, the moment looked nothing like the image I had carried in my mind of what it would be like when my baby was born.

I had imagined someone placing her on my chest.

I would hold her tiny body against mine.

My husband and I would look at her face together and say,

“She’s so cute.”

Somewhere inside me, I think I had assumed that was simply what happened after a baby was born.

But we did not have that moment.

We were able to take a photograph.

But I could not hold her.

And then our daughter was taken straight to the NICU.

This was not something that had come as a sudden surprise.

Before the birth, we had already been told that she would likely need to stay in the hospital for more than a month after she was born.

I knew that.

I understood, at least in my head, that she probably would not return to the hospital room with me.

I knew that the three of us would not simply leave the hospital together and immediately begin our life as a family at home.

It had all been explained to us beforehand.

But knowing something is going to happen and actually watching it happen are two very different things.

She was born.

She was really here.

And before I could even hold her, she was taken somewhere else.

I had waited so long to meet her.

And yet our first meeting lasted only a moment.

When my husband first saw her, he later told me that she looked exactly as he had imagined from the ultrasound.

During the pregnancy, there had been one ultrasound image where the doctor showed us her face from the front.

Her eyes had looked unbelievably large compared with the rest of her tiny face.

I had looked at the screen and thought,

Are her eyes really that big?

And now, seeing her for the first time, my husband thought they really were.

Big, round eyes.

Exactly like the ultrasound.

He thought she was cute.

She had cried.

She had made it here.

For him, it was an emotional moment.

For me, it was a little different.

I hesitated about whether I should write this.

But it is part of what I truly felt that day, so I want to leave it here.

When I first saw my daughter after she was born, I did not immediately think,

She’s so cute.

Of course I was happy that she had been born.

I was relieved that she had cried.

She was the daughter I had wanted to meet for so long.

But the first emotion that came over me was not something as simple as “she’s cute.”

Her head was long and stretched from the vacuum delivery.

Her breathing looked difficult.

Medical equipment was being attached to her body almost as soon as she entered the world.

Doctors and nurses were moving quickly around her.

And before I could hold her, she was taken to the NICU.

There was simply too much happening.

I do not think my emotions had caught up with reality yet.

Throughout the pregnancy, I had heard the same words again and again.

“We won’t know for sure until she’s born.”

Would she be able to breathe?

What would her body actually be like?

How severe would her condition be?

What symptoms would she have?

Whenever I wanted answers, there was always a limit to what anyone could tell me before birth.

We would know more once she was born.

So while I desperately wanted to meet my daughter, part of me had also been afraid of the day she would arrive.

Her birth would be the moment I finally met her.

But it would also be the moment when all the things we had been unable to know during pregnancy began to become real.

And now that reality was right in front of me.

Maybe that was why.

“Cute.”

“Happy.”

“Moved to tears.”

None of those words alone could describe what I felt.

After our daughter was taken to the NICU, I remained behind while the medical team continued taking care of me after the delivery.

Only moments earlier, she had been there.

She had spent all those months inside my body, appeared in front of me for just a brief moment, and then disappeared into another part of the hospital.

It was a strange feeling.

My belly was empty now.

But my arms were empty too.

I had given birth, and yet the reality of having a baby still had not fully reached me.

About four hours later, I was finally able to enter the NICU.

I was going to see my daughter again.

This time, I would not just catch a glimpse of her from the delivery bed.

This time, I could go to where she was.

I entered the NICU and found her.

There she was.

The same baby I had given birth to only hours earlier.

She was small.

So incredibly small.

And there were things attached all over her body.

Heart-monitoring leads and other equipment surrounded her, some of which I did not even understand at the time.

Seeing her like that made me worry all over again.

Then I looked at her feet.

Both of them turned sharply inward.

We had already been told during pregnancy that there was something unusual about her feet, but seeing them with my own eyes was different from hearing about them or seeing them on an ultrasound.

Is she going to be okay?

Will she be able to walk?

Can this be treated?

What is going to happen to her body as she grows?

Once again, my mind rushed toward the future.

I had spent so much of the pregnancy doing exactly that.

And on the very day she was born, I was already doing it again.

But something was different this time.

I was finally beside her.

And I could touch her.

At last, I could touch the child who had lived inside me for all those months.

The moment my hand touched her tiny body, reality slowly began to settle in.

This is my daughter.

The baby I had watched on ultrasound screens again and again.

The baby whose movements I had felt inside my belly.

The baby whose short bones had frightened me so much.

The baby whose possible diagnosis I had searched for late at night, imagining futures that had not even happened yet and crying over them.

The baby I had spent months asking,

Please be born safely.

And now she was right in front of me.

There were still wires and medical equipment attached to her tiny body.

I was worried about her feet.

I was worried about her breathing.

She would remain in the hospital for more than a month.

There was still so much we did not know about her condition or what the future would bring.

But as I touched her, one thought finally came from somewhere deeper than all the fear.

Thank you for being born.

In the delivery room, my emotions had not caught up with me.

I had not been able to look at her and immediately think she was cute.

But standing beside her in the NICU, touching her tiny body, none of that seemed important anymore.

Cute.

Normal.

What will happen to her?

For that moment, I was finally able to stop thinking about the future.

She was here.

Right now.

Alive in front of me.

And for that moment, that was enough.

With my hand resting gently against my daughter, I said it once more in my heart.

Thank you for being born.

Ito-chan.

We finally met.

🇯🇵Read in Japanese

Born.

January 5.

This was the day I was going to give birth to our daughter.

The night before, I had rested my hand on my large belly in the hospital room and whispered to her again and again,

“We’ll meet soon.”

Please breathe.

If you can, let me hear your voice.

And please, let us see your face.

Those were the wishes I carried with me as morning came.

At around seven in the morning, the medication to induce labor was started.

Because this was my first delivery, I had been told that labor probably would not begin immediately.

I believed that too.

I even told my husband,

“You don’t have to come that early. It probably won’t happen so quickly.”

I thought it might be a long day.

There was even a part of me that wondered whether our daughter would actually be born that day.

So when the induction began, I was still relatively calm.

This is just the beginning.

Things will probably move slowly from here.

At least, that was what I thought.

But my body responded much faster than anyone had expected.

About two hours after the induction began, the pain started to grow stronger.

At first, I wondered,

Is this labor?

But I did not have much time to wonder.

Soon, the pain became impossible to ignore.

It hurt.

That was almost the only thought left in my mind.

The pain came in waves unlike anything I had ever experienced.

One wave would finally begin to fade, and just when I thought I could breathe again, another would come.

I immediately contacted my husband.

“The contractions started. Hurry.”

Only a short time earlier, I had told him there was no need to come early.

Now, none of that mattered.

I just wanted him there.

Suddenly, facing the pain alone felt frightening.

After that, I was given anesthesia for the epidural delivery.

I thought,

This should make it easier.

But for me, it did not work as well as I had expected.

The pain remained.

Every time another contraction came, my entire body tensed.

Perhaps I had imagined that the word “epidural” meant the pain would almost disappear.

But in that moment, it still hurt.

A lot.

Then my husband arrived.

The moment I saw his face, I felt a little safer.

Throughout the pregnancy, we had traveled to this hospital together again and again.

We had listened to unfamiliar medical terms together.

We had heard frightening possibilities.

I had cried many times.

And now, on the day our daughter was finally going to be born, he had come to stand beside me again.

We both thought labor might take a long time from there.

But around three hours after the induction had begun, the contractions had already become intense, and the atmosphere in the room began to change.

I was being prepared to give birth.

Everything was moving much faster than I had expected.

That morning, I had only just begun the induction.

I had told my husband not to hurry.

And now, suddenly, it felt as though we were already approaching the moment when our daughter would be born.

When the contractions became stronger again, my husband was asked to move temporarily to another room while the medical staff performed the necessary procedures.

The pain continued while he was gone.

My sense of time gradually disappeared.

I did not know how many minutes had passed.

I stopped caring what time it was.

I had no idea how much longer it would take.

There was only the next contraction.

And then the next.

When the doctors thought the birth might be getting close, my husband was allowed back into the delivery room.

Until then, everything had progressed smoothly.

My body had responded quickly to the induction.

The contractions had started.

I was ready to push.

So I thought,

Maybe it won’t take much longer.

But that was when time began to feel unbearably long.

Push.

Rest.

Another contraction.

Push again.

Again.

And again.

But she did not come.

Every time, I thought,

Maybe this time.

But she still did not come.

Another contraction would arrive, and I would gather every bit of strength I had and push harder than I thought my body was capable of pushing.

Still, she did not come.

My husband stayed near my head the entire time.

There was not much he could physically do to help me.

So he kept gently stroking my head.

Again and again.

It hurts.

I can’t do this anymore.

I’m exhausted.

Those thoughts came into my mind, but every time another contraction arrived, I had no choice but to try again.

The medical team explained that for a baby to be born, it was not only the mother’s pushing that mattered—the baby also needed some strength of her own to move through the birth canal.

They thought our daughter’s strength might be a little weak.

The moment I heard that, all the fears I had carried throughout the pregnancy briefly returned.

Is she okay?

Can she make it out?

But there was no time to disappear into those thoughts.

All I could think was,

Come on.

Please come out.

We’re doing this together.

Just a little more.

Come to us.

One hour passed.

Then two.

Still, our daughter was not born.

My own strength was fading, but the doctors were also concerned about how long the baby could continue.

Eventually, we were told that if she could not be delivered, a cesarean section might become necessary.

After coming this far, I might still need a C-section.

But strangely, when I heard that, I did not think,

I have to give birth naturally.

I did not care how she came into the world anymore.

I only wanted her to be safe.

For months, I had worried about her diagnosis.

Her breathing.

Possible complications.

Her future.

But now, before any of those things mattered, there was only one thing I wanted.

Please make it here safely.

Eventually, the decision was made to use vacuum-assisted delivery.

By that point, I suddenly realized how many people were in the delivery room.

Doctors.

Midwives.

And others who may have been residents or observers—I did not know.

In my memory, there were around fifteen adults in the room.

Even in the middle of labor, part of me wondered,

Are there usually this many people at a birth?

Is our daughter’s birth unusual?

Is everyone here because there is something special about her case?

It was a strange thought to have at that moment.

But then another contraction came, and there was no room left in my mind for anything else.

It was time for the vacuum-assisted delivery.

I pushed again.

Then a very tall, large male doctor stepped in.

At the time, I had no idea who he was.

Only later did I learn that he was the most senior doctor there.

He positioned himself above me and pressed down on my abdomen with tremendous force, pushing from the upper part of my belly downward as though he were helping guide our daughter toward the outside world.

The vacuum.

My pushing.

And the doctor’s powerful push.

Everything happened together.

And then—

she was born.

After all those hours that had felt endless, the actual moment happened in an instant.

The daughter who had lived inside me for all those months was suddenly outside my body.

The daughter I had only ever seen through an ultrasound screen.

The daughter whose bones we had been told were short.

The daughter who might have congenital spondyloepiphyseal dysplasia.

The daughter we had been told might have difficulty breathing after birth.

She was here.

In the same world as us.

Born.

That was the only word that came into my mind.

I could not immediately think beyond it.

She had really been born.

And almost immediately after her birth, our daughter was taken to the NICU.

We had waited so long to meet her, but our time together did not begin in the way I had imagined.

I remained in the delivery room.

Our daughter went to the NICU.

For months, I had imagined what life would be like after she was born.

The beginning we were given was a little different from the one I had pictured.

But one thing was certain.

She had been born.

January 5.

The daughter we had planned to meet on this day had truly made it to us.

The night before, I had repeated the same wishes over and over.

Please be born safely.

Please breathe.

If you can, let me hear your voice.

And please, let us see your face.

I still did not know all the answers.

I did not know what was waiting for her in the NICU.

I did not yet know exactly what was happening inside her tiny body.

I did not know how our lives were about to change.

There was still so much we did not know.

But on that day, one thing finally became certain.

After all the months we had spent fearing the future,

you were born.

— End of Chapter One —

Chapter Two — The First Three Months

Our daughter went straight to the NICU after she was born.

We began to learn about her body in ways we never had before.

There were days spent in the hospital, unfamiliar experiences, and the beginning of a family life that looked different from the one we had imagined.

And little by little, beyond the diagnosis and beyond the fear, we began to discover who our daughter really was.

Ito-chan’s story continues—

into the first three months of her life.

We Still Knew Nothing About Your Future

🇯🇵 Read in Japanese

The hospital visits every two weeks gradually became part of our lives.

The long drive with my husband, the familiar hospital entrance, the waiting room, and the ultrasound examination all became routines that I knew well.

But becoming familiar with them did not make them less frightening.

Every time we went to the hospital, I carried a small hope with me.

Maybe this time, her bones will have grown more.

Maybe she will have caught up a little.

Maybe the doctor will look at the measurements and say,

“She’s growing well.”

I knew I should not expect those words.

But every time I lay down for another ultrasound, part of me still waited for them.

Her head continued to grow.

Her body continued to grow.

Her heart kept beating.

Her blood flow looked fine.

But the long bones remained short, and as the weeks passed, the difference became more noticeable.

Every time another measurement appeared on the screen, I found myself holding my breath.

As the doctors examined her more closely, they began to notice other characteristics as well.

Her long bones were short.

The pubic bone was difficult to identify clearly.

There were also characteristic findings involving the cervical spine.

At first, there had been many possible explanations.

Gradually, those possibilities began to narrow.

Then one day, the doctor said something we would never forget.

“We believe there is a high possibility of congenital spondyloepiphyseal dysplasia.”

The name was so long that I could not immediately process it.

Congenital.

Spondyloepiphyseal.

Dysplasia.

I repeated it silently in my head, trying to hold onto the words.

Congenital spondyloepiphyseal dysplasia.

Until then, there had been many unfamiliar disease names.

Possibilities.

Search results.

Medical terms I had never heard before.

Now, one particular name seemed to be moving closer and closer to our daughter.

The doctors explained that children with this condition could have short stature and that the symptoms varied from person to person.

They also explained that there could be other complications.

Problems with vision.

Difficulty hearing.

Cleft palate.

Breathing difficulties.

I remember thinking that if being short was the main difference, perhaps I could accept that as part of who she was.

People are born with different bodies.

Different appearances.

Different characteristics.

Maybe being small could simply become one part of our daughter.

But as the doctor continued talking about the other possible complications, my fear returned.

What if she cannot see properly?

What if she cannot hear well?

What if she cannot breathe on her own?

She had not even been born yet.

Nothing had happened.

And still, once again, my mind began traveling years into a future that did not yet exist.

Around that time, however, there was one ultrasound picture that always made me smile.

During one of the examinations, the doctor managed to capture our daughter’s face from the front.

The moment I saw it, I thought,

Wait…aren’t her eyes way too big?

In the black-and-white image, her eyes seemed enormous compared with the rest of her tiny face.

Of course, I knew it was an ultrasound.

The angle, the shadows, and the way the image was captured could make things look very different.

Still, the eyes had such a strong presence that my husband and I looked at the picture again and again.

At a time when every hospital visit seemed to be filled with measurements, medical explanations, and frightening possibilities, that one picture allowed me to think about something completely different.

I wonder what she really looks like.

I wonder whose face she has.

Are her eyes actually that big?

For a moment, I could simply look forward to meeting my daughter.

The disease had not disappeared.

My fear had not disappeared.

But while I was looking at that picture, she was not “a baby who might have congenital spondyloepiphyseal dysplasia.”

She was simply our daughter with the ridiculously large eyes in her ultrasound picture.

I began to understand that fear and love did not have to replace each other.

They could exist at the same time.

I could be terrified of what might happen and still desperately want to meet her.

I could cry about the future and then laugh at an ultrasound picture.

I could wish that nothing was wrong while already loving the child who might be born different from what I had imagined.

Then one day, we sat down with a pediatrician.

The doctor was incredibly kind.

He did not simply give us medical information and move on.

He watched our expressions carefully and spoke slowly, making sure we understood what he was saying.

I told myself to stay calm.

Listen carefully.

Remember everything.

Do not cry.

But the truth was, I had been afraid for a very long time.

Every hospital visit frightened me.

Every measurement frightened me.

The moments when the doctors became quiet frightened me.

At first, I had been terrified because I knew nothing.

Now, I was terrified because little by little, we were beginning to know more.

And then, when the pediatrician spoke to us with such kindness, something inside me finally gave way.

I started crying.

Once the tears came, I could not stop them.

Even now, I cannot explain exactly what I was crying about.

I was sad.

I was frightened.

I was exhausted.

Perhaps somewhere inside me, I was asking,

Why our child?

Perhaps I was tired of imagining a future that no one could promise me.

Perhaps I had simply spent too long trying to hold myself together.

My husband sat quietly beside me.

He did not cry.

He did not say anything dramatic.

He was simply there.

And in that moment, having him beside me was enough.

After we left the hospital, I placed my hand over my stomach again.

Our daughter had been there before we heard the name of the disease.

She was still there after we heard it.

Nothing about her had changed.

What had changed was what we knew.

Congenital spondyloepiphyseal dysplasia.

Sometimes the name felt so enormous that it seemed capable of covering everything else about her.

But then she would move inside me, and I would remember that there were still countless things about our daughter that no doctor could tell us.

What would her cry sound like?

What would make her smile?

What kind of personality would she have?

What would she love?

What would make her angry?

What would make her laugh?

How would she surprise us?

Her future was not made only of medical questions.

Whenever I looked at that ultrasound picture, I found myself wondering,

Are your eyes really that big?

What will your voice sound like?

What will you smell like when I finally hold you?

I was not yet strong enough to say,

“No matter what happens, everything will be fine.”

I was still scared.

Of course I wanted the doctors to tell us that nothing was wrong.

But slowly, one feeling was becoming stronger than all the others.

I wanted to meet her.

Not the diagnosis.

Her.

The little face we had watched so many times on the ultrasound screen.

Our daughter, whom the doctor had once simply looked at and called “cute.”

And whether I was ready or not, the day we would finally meet her was getting closer.