Understanding Cleft Palate and Nasogastric Tube Feeding

For most babies, drinking milk is a natural part of everyday life.

But for Ito-chan, it has never been quite that simple.

Ito-chan was born with a condition called a cleft palate.

Because of this, she has difficulty drinking enough milk by mouth. She currently receives much of the nutrition she needs through a small tube that passes through her nose and into her stomach.

In this article, we would like to explain what a cleft palate is, why it can make feeding difficult, and what our family has experienced while caring for Ito-chan.

What Is a Cleft Palate?

The palate is the roof of the mouth.

It separates the oral cavity from the nasal cavity and plays an important role in feeding, swallowing, and speech.

A cleft palate is a condition in which part of the roof of the mouth does not completely join together during development before birth, leaving an opening.

The location and size of the opening vary from person to person.

When a baby has a cleft palate, it can be difficult to create the suction needed to drink milk. Milk may also pass into the nasal cavity during feeding.

However, not every baby with a cleft palate has the same feeding difficulties.

Some babies can drink by mouth using specially designed bottles, while others need additional nutritional support.

The right approach depends on each baby’s individual needs.

Why Can Feeding Be So Difficult?

Drinking milk involves much more than simply moving the mouth.

Babies must coordinate three important actions:

Sucking, swallowing, and breathing.

These actions need to work together for feeding to be safe and effective.

When a baby has a cleft palate, the opening in the roof of the mouth can make it difficult to create a proper seal and generate suction.

Some babies may also have difficulties coordinating swallowing and breathing.

This means that feeding challenges cannot always be solved simply through practice.

It is important to work with healthcare professionals to find a safe and effective way for each baby to receive the nutrition they need.

Ito-chan’s Feeding Journey

Ito-chan has had difficulty drinking enough milk by mouth since birth.

We tried feeding aids, including a special mouthpiece, but they did not significantly increase the amount of milk she could drink.

To make sure she receives enough nutrition, she uses a nasogastric tube, often called an NG tube.

This is a thin, flexible tube that passes through the nose and into the stomach.

In our case, each milk feeding takes approximately 30 minutes.

Every time it is time for milk, we prepare everything, check the tube as instructed by her medical team, and slowly administer her feeding.

During her early months, she needed milk approximately every three hours.

Sometimes, by the time we finished one feeding, it already felt as though we needed to start preparing for the next.

There were days when parenting felt less like enjoying precious moments and more like completing one necessary task after another.

We loved Ito-chan more than anything.

But caring for a baby with additional medical needs could also be physically and emotionally exhausting.

Does Tube Feeding Mean Everything Is Fine?

A nasogastric tube is an important way to provide nutrition and fluids when a baby cannot take enough by mouth.

However, tube feeding also requires careful monitoring and management.

For a long time, Ito-chan experienced frequent milk regurgitation.

Sometimes, shortly after a feeding, milk would come back up.

We would change her clothes, clean everything, and then find ourselves doing it all over again.

There were days when she needed several changes of clothes.

Naturally, we worried about whether she was getting enough nutrition and whether she was comfortable.

Thankfully, as she grew, the amount of milk she brought back up decreased significantly.

Although the amount she could drink by mouth had not changed very much, this improvement made an enormous difference to our daily lives.

It was one of those small changes that felt incredibly meaningful to us.

An NG tube is a medical device that requires proper placement checks and careful management. Feeding and tube replacement should always follow instructions from qualified healthcare professionals.

Will She Be Able to Drink by Mouth One Day?

Feeding abilities in children with a cleft palate depend on several factors.

These may include the structure of the palate, swallowing function, breathing, and overall development.

Some children benefit from specialized feeding equipment, while others require additional nutritional support through a feeding tube.

Surgery to repair the cleft palate may also be considered, depending on the child’s condition and medical needs.

However, surgery does not necessarily mean that a child will immediately be able to drink normally afterward.

Every child’s progress is different.

Ito-chan continues to gain experience using her mouth in her own way.

For us, the most important goal is not for her to reach the same milestones as other babies at exactly the same time.

What matters most is that she receives enough nutrition safely and comfortably.

And we hope that, one day, she will be able to experience the joy of eating and drinking in whatever way works best for her.

A Message From Our Family

Before Ito-chan was born, we never imagined how complicated something as ordinary as drinking milk could be.

Feeding a baby seemed like such a natural part of parenting.

But through Ito-chan, we have learned just how many different functions the body needs to coordinate to make it possible.

Sometimes, people see the tube on her face and feel concerned.

We understand that reaction.

But for Ito-chan, this tube is an important part of helping her grow and stay healthy.

Even when the amount of milk she can drink by mouth does not increase, there are still so many signs of progress.

She brings up less milk.

She smiles more often.

Her body continues to grow.

And every day, she shows us something new.

Growth cannot be measured by just one number or one milestone.

Ito-chan has her own pace.

We want to keep celebrating each small step, learning alongside her, and supporting her as her world continues to grow.

Medical note: This article combines general information about cleft palate and nasogastric tube feeding with our family’s personal experience. Not every child with spondyloepiphyseal dysplasia congenita (SEDC) has a cleft palate. Feeding methods, tube management, and treatment decisions should always be discussed with the child’s healthcare team.

Understanding the Cervical Spine — and Our Experience with Ito-chan

As we learned more about Ito-chan’s condition, there was one part of her body we were told to be especially careful with:

her neck.

Spondyloepiphyseal Dysplasia Congenita (SEDC) is a skeletal condition that affects the development of bones and cartilage.

But at first, we had so many questions.

Why is the neck so important?

Is it safe to hold her normally?

What about tummy time, rolling over, and other movements as she grows?

And in Ito-chan’s case, an X-ray showed that her cervical spine has a structural difference of its own.

In this article, we want to share both what is medically known about SEDC and the cervical spine, and what we have experienced as Ito-chan’s family.

This article combines general medical information with our family’s personal experience. Cervical spine findings and necessary precautions can vary from person to person, even among children with SEDC. Please discuss your child’s individual situation with their medical team.

What is the cervical spine?

The cervical spine is the part of the spine located in the neck.

Typically, it consists of seven vertebrae.

These bones help support the head and allow the neck to bend, extend, and turn.

But there is another important reason this area matters:

The spinal cord passes through it.

The spinal cord is one of the body’s major pathways for communication between the brain and the rest of the body.

So when doctors look at the cervical spine, they are not only looking at the bones themselves.

They are also thinking about protecting the spinal cord.

Why does the neck need special attention in SEDC?

SEDC is one of the conditions associated with abnormalities in type II collagen.

In people with SEDC and other type II collagen disorders, instability of the cervical spine can occur, and in some cases this can place pressure on the spinal cord.

This is why evaluating the cervical spine can be an important part of medical care for people with SEDC.

It is not simply a matter of saying:

“Children with SEDC have weak necks.”

What really matters is understanding:

What does this particular child’s cervical spine look like, and is it stable?

In Ito-chan’s case

Ito-chan has had X-rays taken to examine her neck.

From those images, we were told by her doctor that one of the cervical vertebrae that would normally be expected was not identifiable, meaning that she appeared to have one fewer cervical vertebra than usual.

Hearing this made the importance of protecting her neck feel much more real to us.

Before that, we understood the general information:

“Children with SEDC may need special attention to their neck.”

But after seeing Ito-chan’s own X-rays, our thinking changed.

It was no longer simply:

“We need to be careful because she has SEDC.”

It became:

“This is how Ito-chan’s neck is formed, so let’s understand her body and protect it accordingly.”

We supported her neck until around seven months old

One thing we were especially conscious of was supporting Ito-chan’s neck.

Of course, newborn babies generally need their heads and necks supported.

But with Ito-chan, we continued to be especially careful even as she grew and became more active.

Until she was around seven months old, we made sure to support her neck when holding her.

We did not want to assume that everything was fine simply because she was becoming stronger or could move her head herself.

We tried to avoid placing unnecessary stress on her neck while watching her development carefully.

This does not mean that every baby with SEDC needs their neck supported until seven months of age.

This was Ito-chan’s individual situation and our family’s experience.

Children with the same diagnosis can have different cervical spine findings, different levels of stability, and different developmental progress.

That is why we believe it is important not to decide based only on age.

Instead, families should discuss their child’s individual cervical spine findings and appropriate precautions with their medical team.

Looking healthy doesn’t tell us everything

A baby may be smiling.

Moving their arms and legs.

Turning their head.

Becoming more active every day.

It can be easy to think:

“Maybe everything is fine now.”

But we cannot see the structure or stability of the cervical spine simply by looking from the outside.

For type II collagen disorders, medical evaluation may include imaging to assess cervical instability and possible spinal cord compression.

GeneReviews discusses flexion-extension cervical spine X-rays as part of the evaluation, with MRI considered when further assessment is necessary.

The appropriate tests and timing depend on each individual.

For us, this reinforced something important:

Rather than assuming everything is fine because a child looks well, some things are worth checking properly.

What should families be careful about in everyday life?

This may be one of the biggest questions for parents.

Can I hold my baby normally?

Is tummy time okay?

What about rolling over?

Playing?

Sports later in life?

The more we read, the easier it can become to feel afraid of every movement.

But having SEDC does not automatically mean that every child needs exactly the same restrictions.

When cervical instability is present, certain movements that place significant stress on the neck, including extreme flexion or extension, may require caution. High-impact or contact activities may also need to be avoided depending on the individual situation.

That is why we think it is better not to decide:

“I read online that children with SEDC can’t do this.”

Instead, ask the medical team a more specific question:

“For my child’s neck, what should we be careful about in everyday life?”

The answer may be different for every child.

The neck can also matter during surgery and anesthesia

The cervical spine is important not only in everyday life, but also during surgery and general anesthesia.

During anesthesia, positioning and airway management can involve movement of the neck.

For people with type II collagen disorders, evaluation of the cervical spine before general anesthesia may therefore be important.

For a child like Ito-chan, who has a known structural difference in her cervical spine, we feel it is especially important to make sure medical professionals are aware of it.

If we ever visit a different hospital or need emergency medical care, one of the things we want to communicate clearly is:

“She has SEDC, and she also has a known difference in her cervical spine.”

It is a small piece of information that may be very important.

Hearing “be careful with her neck” can be frightening

It was frightening for us, too.

The neck protects such an important part of the nervous system.

Then we were told that Ito-chan’s cervical spine was different from what is typically expected.

Naturally, we wondered:

“Is it safe for her to move like this?”

“What if something happens?”

Sometimes, learning more about a condition can actually create more anxiety.

But over time, the way we think about it has changed.

Knowledge is not there to make us afraid.
It is there to help us protect her.

Understand the condition.

Have the necessary examinations.

Know what to be careful about.

And within those boundaries, allow Ito-chan to experience more and more of what she can do.

Rather than stopping everything because she has a medical condition, we want to understand her body and help her experience the world in ways that are appropriate for her.

What we are glad we learned

When researching SEDC, families may come across frightening terms such as:

“cervical instability”

or

“spinal cord compression.”

Those risks are important to understand.

But for us, the most valuable information was not simply knowing that neck problems can occur in SEDC.

It was having Ito-chan’s own neck examined and asking:

“What does her cervical spine actually look like?”

Once we knew that, we could start thinking about the next question:

“So what should we do for her?”

The diagnosis may be the same.

But every child’s body is different.

That is why we want to keep these three things in mind:

Learn about the condition.
Understand our own child’s body.
Then decide what that child needs.

To families raising a child with SEDC

If you are reading this because you are worried about your child’s neck, you may find yourself searching endlessly for:

“What shouldn’t a child with SEDC do?”

But another helpful step may be to ask your child’s doctor:

“What does my child’s cervical spine look like right now?”

“Are there any movements we should avoid in everyday life?”

“What kind of follow-up imaging will my child need?”

General information about SEDC is important.

But understanding your own child’s body is just as important.

That is something we have learned while raising Ito-chan.

Next Article

03 | Why Can a Bone Condition Affect the Eyes and Ears?
— Understanding Type II Collagen and the Body

What We Learned After Our Daughter’s Diagnosis

Spondyloepiphyseal Dysplasia Congenita.

Before Ito-chan was born, we had never heard of this condition.

When we first learned the name, we had so many questions.

What kind of condition is it?
How will she grow?
Will she be able to walk?
What will her everyday life be like?

We didn’t know what to expect.

When we searched online, we found long lists of possible symptoms and complications.

Sometimes, the more we learned, the more anxious we became.

But after living and growing together with Ito-chan, there is something we have come to believe:

Learning about a condition is not the same as deciding a child’s future.

In this article, we want to explain SEDC as simply as possible, focusing on the things we ourselves wanted to understand when we first learned about Ito-chan’s condition.

This article combines general medical information with our family’s experience. Symptoms and their severity can vary greatly from person to person. Please consult your medical team regarding individual diagnosis and treatment.

What is SEDC?

Spondyloepiphyseal Dysplasia Congenita, or SEDC, is a skeletal disorder that affects the development of bones and cartilage.

The name itself gives us some clues:

“Spondylo” refers to the spine.
“Epiphyseal” refers to the ends of long bones.
“Dysplasia” refers to differences in development or formation.

Because of this, SEDC can affect the growth of the spine and long bones and may result in short stature and differences in body proportions. 

What causes SEDC?

Typical SEDC is associated with disease-causing changes in a gene called COL2A1.

COL2A1 provides instructions for making type II collagen.

When people hear the word “collagen,” they may immediately think about skin.

But type II collagen plays an important role in cartilage and other tissues throughout the body.

Changes in COL2A1 can therefore affect the development of bones, cartilage, and other tissues. 

This was when we began to understand something important:

SEDC is not only about bones.

What are the possible features?

SEDC can affect people in different ways.

Possible features may include:

• short stature and differences in body proportions
• problems involving the spine or neck
• hip and other joint problems
• eye problems such as myopia
• hearing problems
• cleft palate
• clubfoot
• respiratory complications

Not every person with SEDC will experience all of these. 

That point is extremely important.

A list of possible symptoms is not a prediction of one child’s future.

Even among people with the same diagnosis, the features and their severity can vary.

Why is the neck so important?

One of the things we learned was the importance of the cervical spine—the bones in the neck.

Some people with SEDC can have instability in this area, which may affect the spinal cord.

Because of this, medical evaluation and appropriate imaging may be important depending on the individual child. 

It is something that may not be obvious simply by looking at a child.

That made us realize how important it is to understand the condition while continuing to follow the advice of specialists.

We will talk more about the cervical spine in the next article.

Why can a bone condition affect the eyes and ears?

This surprised us at first, too.

Type II collagen is not only important in cartilage. It is also found in other parts of the body, including structures within the eye.

This helps explain why some people with COL2A1-related disorders may experience eye problems such as myopia, as well as hearing problems. 

The words “skeletal disorder” alone do not tell the whole story.

Depending on the individual child, care may involve several medical specialties rather than orthopedics alone.

Is SEDC inherited?

SEDC generally follows an autosomal dominant inheritance pattern.

However, having a genetic condition does not necessarily mean that it was inherited from a parent.

In some children, the genetic change occurs for the first time in that child, rather than being inherited from either parent. 

Questions about inheritance and future pregnancies depend on each family’s specific genetic findings, so they are best discussed with a genetics specialist or genetic counselor.

We will cover this topic in more detail in another article.

What frightened us most

Looking back, perhaps what frightened us most was not the name of the condition itself.

It was not knowing what our daughter’s future would look like.

Every search seemed to bring another possibility:

“This could happen.”

“This complication is possible.”

Knowing what to watch for is important.

But today, we also believe something else.

We cannot know the future until we get there.

That does not mean our worries have disappeared.

We attend the necessary appointments.
We learn what we need to watch for.
We continue learning about her condition.

But at the same time,

we don’t want our fear of things that have not happened yet to stop us from seeing the Ito-chan who is right in front of us today.

A diagnosis cannot tell us who a child will become

Living with Ito-chan, we see new things every day.

Something she couldn’t do yesterday becomes possible today.

She laughs at unexpected things.

New worries appear, and so do new joys.

In many ways, perhaps that is simply what raising a child is.

A medical description cannot tell us how a child will smile.

It cannot tell us what she will love.

And it cannot tell us what kind of life she will create.

So this is how we want to move forward:

Learn about the condition.
Prepare for what needs attention.
But never let a diagnosis decide a child’s future.

We hope these articles can help families walking a similar path.

And for those learning about SEDC for the first time, we hope they offer a small window into a world they may not have known before.

Next Article

02 | Why Is the Neck So Important in SEDC?
— Understanding the Cervical Spine

Walking Forward With You

🇯🇵Read in Japanese

Ito-chan’s surgery had ended safely, and she was able to leave the hospital the very next day, but that did not mean the treatment for her feet was over; if anything, it felt as though a new kind of everyday life was only just beginning for us.

After the surgery, Ito-chan’s tiny feet were completely covered by hard casts.

Because the rest of her body was still so small, the casts looked unusually large and heavy whenever we picked her up, and although we had no way of knowing how heavy they actually felt to her, we became much more careful whenever we held her, laid her down, or changed her clothes, constantly checking that the casts were not hitting anything or putting pressure on her legs in the wrong way.

One of the most difficult parts of living with the casts was bath time.

The casts could not get wet, so at home we covered them with plastic bags and carefully washed only the upper half of her body, making sure that no water reached her legs.

Before Ito-chan was born, I had always imagined bathing a baby as something simple: lowering a tiny body into warm water, supporting her carefully, and washing her from head to toe.

Even something as ordinary as that was no longer simple.

She could only have her whole body washed about once every two weeks, when the casts were removed at the hospital and we could bathe her properly, almost like the baths we had given her when she was much smaller.

Whenever the casts came off and I saw her bare feet again, I would think,

“They’re so tiny.”

I had seen those feet every day since she was born, yet after spending so much time hidden inside the casts, I almost felt as though I had forgotten how small they really were.

And more than anything else, I could see that the feet that had once turned so strongly inward were now pointing forward.

They were straight.

Perhaps that should have seemed obvious after everything she had been through, but actually seeing the change with my own eyes felt completely different.

I thought about the day we had handed her over for surgery, terrified of the general anesthesia, and about all the time I had spent wishing for nothing more than for her to come back to us safely.

Now, the result of that frightening day was right there in front of me, in those two tiny feet.

But the treatment did not end when the casts came off.

Next came the braces.

The first time I saw them, my immediate thought was,

“They look like a snowboard.”

There were two rigid shoes made specifically for clubfoot, and after putting one on each foot, a bar was clicked into place between the heels so that her feet remained connected and her hips stayed open.

For something designed for such a small baby, it had an enormous presence.

We were told that she would probably need to wear this brace until she was around two years old.

“Until she’s two?”

At the time, Ito-chan was only a few months old, so two years old felt impossibly far away.

Would she really wear this every day?

Would she sleep like this?

Wouldn’t it make it difficult for her to move?

How could she possibly roll over with both feet connected by a bar?

The doctors told us that babies gradually learn how to move their legs even while wearing the brace, and that some of them eventually learn to roll over without taking it off.

“With this thing on?”

At first, I found that hard to imagine.

Her feet were literally connected by a rigid bar, and from an adult’s perspective, it looked like something that should make movement almost impossible.

But Ito-chan moved far more than we expected.

She lifted both legs together, twisted her body, and moved the brace as though its weight bothered her far less than it bothered us just looking at it.

“She can really move that much?”

Once again, I realized that we had been the ones quietly deciding what she might not be able to do before she had even had the chance to try.

The brace also brought another routine into our everyday lives.

About three times a day, we removed it and massaged her feet using the method the doctor had taught us, gently moving them so that her Achilles tendons would not become too stiff.

We had been shown exactly what to do at the hospital, but in the beginning, simply taking the brace off and putting it back on again took us a surprisingly long time.

We had to guide those tiny feet into the rigid shoes, make sure they were positioned correctly, secure everything, and then click the bar back into place between the heels.

Is this too tight?

Is it too loose?

Is her foot sitting correctly?

Things that the doctors seemed to do effortlessly at the hospital suddenly felt much more complicated when we had to do them ourselves at home.

Still, three times a day, we removed the brace and touched those little feet.

The massages were part of her treatment, but they also became moments when I could really look at her feet.

The feet that had once turned strongly inward were now pointing forward, and I would hold them gently in my hands and move them exactly as the doctor had shown us.

Stay soft.

Please stay straight.

Those were the kinds of things I found myself thinking as I massaged them every day.

Around that time, I began to understand that treatment was not something that happened only inside an operating room.

The doctors could perform the surgery, but the treatment did not end when we walked out of the hospital.

At home, we put the brace on, took it off, massaged her feet, and put it back on again, repeating the same routine every day.

All of that was part of the treatment too.

There had also been a frightening moment while she was still wearing the casts.

One day, we noticed that one of them seemed to be getting loose.

At first, I wondered whether that was normal, but then it became obvious that it was much looser than before.

And eventually, it came off.

“Wait… it came off?”

For a moment, I did not know what to do.

After everything she had gone through to correct the position of her feet, was it really okay for the cast that was supposed to hold that correction to simply come off?

What if her foot turned inward again?

What if all the progress was lost?

What if she needed another surgery?

As usual, one small event was enough for my mind to race toward several frightening futures at once.

But there was no time to sit there imagining them, so we took her straight back to the hospital.

By then, we had traveled to hospitals more times than I could count, but driving there for a scheduled appointment and rushing there because we thought something had gone wrong felt completely different, even when the road itself was exactly the same.

I kept looking at her foot, wondering whether everything was okay and wishing we could somehow arrive faster.

Since pregnancy, there had been so many moments in our lives that ended with the same thought:

“If something happens, go to the hospital.”

Those moments were always frightening, but over time I also began to understand how reassuring it was to have somewhere we could go, somewhere with doctors who already knew Ito-chan and understood what her body had been through.

There was another reality of treatment that we had never fully understood until we were actually living it.

Money.

In our case, there were systems that allowed some of the costs to be reimbursed after applying for them, but that did not mean every expense simply disappeared.

There were still costs we had to pay ourselves first, and at times, a single treatment-related payment could exceed 300,000 yen.

Ito-chan’s brace alone cost more than 130,000 yen.

It was one piece of medical equipment for one tiny baby, and yet it cost that much.

Then there were the hospital stays, the surgery, and the repeated trips back and forth for appointments.

Of course, we never thought,

“This is too expensive, so we won’t do the treatment.”

If our daughter needed something, we wanted to do whatever we could for her.

That part was simple.

But there is a difference between saying,

“We’ll pay because she needs it,”

and saying,

“It isn’t a burden.”

While worrying about her body, keeping track of her next appointment, managing her milk through the feeding tube, watching her spit up, checking her breathing, and knowing that more detailed hearing tests were still ahead of us, we also had to think about how much each treatment would cost, what paperwork needed to be submitted, and how much might eventually be reimbursed.

Raising a child with a medical condition was not only about worrying, encouraging her, and loving her.

It also meant finding time to travel to hospitals, paying for transportation, paying for treatments and medical equipment, completing applications, and handling all the practical things that still had to be done while our hearts were busy worrying about our daughter.

No one else could simply make all of those things disappear.

It was hard.

And yet, every time we came home, Ito-chan’s day began again as though none of those adult concerns had anything to do with her.

When it was time for milk, we fed her.

When she spit up, we cleaned it.

We checked her feeding tube, watched her breathing when it looked rough, and when it was time to remove the brace, we massaged her feet before putting those rigid little shoes back on and clicking the bar into place again.

Then, one day in the middle of that ordinary routine, Ito-chan began twisting her body.

At first, I did not understand what she was trying to do.

She turned slightly to one side, moved her legs, twisted again, and seemed to gather her whole little body into the movement.

I watched her.

And then,

she rolled over.

For a second, I just stared.

She had rolled over.

She was around four months old, and her neck was not even fully stable yet.

“Ito-chan rolled over!”

I could hardly believe it.

The doctors had told us that some babies learned to roll over even while wearing the brace, but that had always been something that other babies could do, something I had heard as information rather than something I could actually imagine happening in front of me.

And yet there she was.

Her feet were connected.

She was wearing the brace.

Her body still needed so much treatment.

And somehow, she had figured out how to move anyway.

I was overwhelmed.

Throughout pregnancy, I had spent so much time wondering what this child would be able to do and what she might never be able to do.

Would she walk?

Would she stand?

Would she be able to move her body freely?

While I was worrying about things that might happen years in the future, Ito-chan was quietly using the body she had right now to discover what she could do today.

It was only a roll.

For another family, perhaps it would have been nothing more than another milestone.

But to me, it was not just a roll.

I remember thinking,

“She’s going to find her own way to move.”

I had spent months imagining a future filled with things she might not be able to do, and right in front of me, without saying a word, Ito-chan simply turned her own body over.

I was so happy.

Back in Chapter One, I had lived almost entirely in the future.

What would she look like when she was born?

Would she be able to breathe on her own?

What condition did she have?

Would she walk?

Would she hear?

Would she be able to live an ordinary life?

I had asked myself questions that had no answers over and over again, believing that once she was born, we would finally know.

But even after she was born, there were still so many things we did not know.

We did not know everything after the doctors explained her condition in the NICU.

We still did not know everything after we brought her home.

And even after her first surgery, there were still so many unanswered questions.

Her hearing would need more detailed testing.

There was still her cleft palate.

We did not know how long she would need the feeding tube.

Treatment for her feet would continue.

But by then, I was beginning to think that maybe we did not need to know everything yet.

Not knowing the future is not the same as having no future.

If we did not know something yet, perhaps we could simply face it when the time came.

If she needed a test, we would have the test.

If she needed treatment, we would talk with her doctors.

If something unexpected happened, we would figure out what we could do then.

And while we were busy worrying about the future, Ito-chan would keep growing.

She had learned to follow people with her eyes.

She had found her voice.

She had started reaching for things.

Her expressions had become richer.

And before her neck was even fully stable,

she rolled over.

The version of Ito-chan standing in my imagination on the day we first heard about her condition had never done any of those things.

Back then, I had been too busy imagining everything she might not be able to do.

But the real Ito-chan seemed completely uninterested in the limits of my imagination.

She simply kept adding one new thing after another to the list of what she could do today.

Maybe we were the ones slowly trying to catch up with her.

Ito-chan, only a few months have passed since you were born, and yet so much has happened that sometimes it feels as though we have already lived years together.

The NICU.

Holding you for the first time.

Learning about your condition.

Visiting you every day.

Feeding you through a tube.

Bringing you home for the first time.

The constant spit-up.

The breathing that frightened us.

The worries about your hearing.

The smiles that slowly became more frequent.

Your first surgery.

The heavy casts.

And then,

life with your new brace.

Through every one of those moments, I was afraid of the future again and again.

But every time I was looking ahead at some frightening future I had created in my mind, you were simply living the day in front of you.

Maybe that is why, little by little, I have learned to do the same.

We still do not know what lies ahead.

We do not know when you will walk.

We do not know what the hearing tests will eventually tell us.

We do not know when the feeding tube will come out.

And we do not know what other treatments may be waiting for you.

But there is one thing I do know.

Whatever the future looks like, we will keep moving through it with you.

You do not have to be fast.

You do not have to be the same as anyone else.

There can be days when we stop and rest.

Just as you are growing at your own pace, your dad and I can keep learning how to be your parents at ours.

Ito-chan, your tiny feet have already made it through their first big surgery.

And now, even with a brace connecting them, you are already moving those feet with all your strength and finding your own way toward whatever comes next.

I do not know what kind of places those feet will take you someday.

We do not need to know yet.

We can discover them together.

At your pace.

At ours.

One step at a time.

We’ll keep walking forward with you.

— End of Chapter Two —

A Big Surgery for Little Feet

🇯🇵Read in Japanese

From the day Ito-chan was born, one of the things that had always worried us was her tiny feet, both of which turned strongly inward.

“Clubfoot.”

We had known from the beginning that her feet would need treatment, and over the weeks we had listened as the doctors explained what might need to happen next, but for a long time, the word “surgery” still felt like something waiting somewhere far in the future.

Then, after Ito-chan had passed three months old, that future arrived.

She would undergo surgery to release her Achilles tendons, correct the position of her feet, and then hold them in place with casts so that the correction could gradually continue.

I understood why the surgery was necessary, and I knew it was part of helping Ito-chan use her feet in the future, but the part that frightened me most was not actually the surgery itself.

It was the words,

“general anesthesia.”

As part of the explanation before surgery, we were told about the anesthesia and the risks that came with it, including the fact that, however small the possibility might be, there was always a chance that something could go wrong.

Of course, I understood why they had to tell us that, and I knew that no doctor could promise that any procedure was completely without risk.

But hearing the words “there is always a possibility” when the person being discussed is your own daughter feels entirely different.

She had only been in this world for a few months, and her body was still so small that I could easily gather all of her into my arms, yet we were about to let someone put her completely under anesthesia and operate on her somewhere we could not see.

Every time I tried to tell myself that this was necessary and that she would be okay, another thought appeared behind it.

What if something happened because of the anesthesia?

What if something happened during surgery?

What if she did not wake up?

I did not want to think about any of those things, but once the thoughts entered my mind, I could not make them disappear.

There had already been so many moments when I had wondered whether Ito-chan would be okay—the possibility of her condition during pregnancy, being taken straight to the NICU after birth, watching her struggle with her breathing, and later being told that her hearing seemed weaker than it should be.

But the fear I felt on the day of her surgery was different.

I had to hand my daughter over and allow her to disappear through a door, knowing that from that moment on, there was absolutely nothing I could do for her.

All I could do was trust the people taking care of her.

As I watched her being taken toward the operating room, I thought,

“Be strong.”

But that was not really what I wanted to say.

You don’t have to be strong.

Just come back to me safely.

Let me see your face again.

Once the doors closed behind her, there was nothing left for me to do except wait, and I had never realized until that day how frightening it could be to simply sit somewhere and wait.

No matter how many times I checked the clock, it barely seemed to move, and no matter what I tried to think about, my mind returned to the same unanswered questions.

Is the anesthesia going okay?

Is the surgery going well?

She’s going to come back, right?

I could not take her place, could not see what was happening, and could not even speak to her.

I could only wait.

Eventually, we were told that the surgery had been completed safely.

The moment I heard those words, it felt as though all the strength that had been holding my body together suddenly disappeared.

Thank goodness.

It was over.

She was safe.

She was coming back.

For the first time since the surgery began, I felt as though I could finally breathe again.

And then, almost immediately afterward, someone said,

“Mom, could you come with us for a moment?”

Only me.

The instant I heard those words, my heart nearly stopped.

I had just been told that the surgery was over and that everything was okay, so why was I being called away by myself?

Something happened.

That was the first thought that entered my mind.

Had there been a problem during surgery?

Had she not woken properly from the anesthesia?

Was it her breathing?

Her heart?

Had they discovered something else?

In the short distance between where I had been waiting and where the doctor was, my mind managed to imagine almost every terrible possibility I had been trying not to think about all day.

Then the doctor explained what had happened.

“They had a great deal of difficulty administering the anesthesia.”

The surgery itself had been completed safely, but getting Ito-chan under anesthesia had been much more difficult than expected.

The doctor went on to explain that if Ito-chan needed surgery or general anesthesia again in the future, it would probably be better for her to have it done at this hospital, where the team now knew what had happened and how difficult the process had been.

The first thing I felt was relief.

Not because nothing had happened—something important clearly had happened, and the difficulty with anesthesia was something we would need to remember for the future—but because the terrible possibilities I had imagined during those few moments were not what the doctor was about to tell me.

Ito-chan was alive.

The surgery was over.

She was coming back to me.

For that moment, that was enough.

Only later did the doctor’s words begin to settle into a different place inside me.

“They had a great deal of difficulty administering the anesthesia.”

Ito-chan might need more surgeries in the future.

There was already surgery for her cleft palate somewhere ahead of us, and there could be other procedures we did not yet know about.

That meant we might have to face general anesthesia again.

I had thought that once this surgery was finished, one of our worries would disappear, but I was beginning to understand that with Ito-chan, finishing one treatment did not always mean the end of worrying; sometimes it simply revealed the next thing we would need to think about.

Still, in that moment, I did not want to think about the next surgery.

I just wanted to see my daughter.

When I finally saw Ito-chan after the operation, my chest tightened.

Her tiny body was connected to so many different machines and monitors, lines seemed to extend from everywhere, and hard casts now covered the little feet that had just been operated on.

She looked so small surrounded by all of it, and the sight was painful to look at.

Only a few months earlier, she had still been inside my belly, and now she had already been put under general anesthesia, taken into an operating room without us, and gone through surgery in a place where we could do nothing to help her.

She could not possibly understand why any of it was happening.

She had been taken somewhere unfamiliar, put to sleep, and when she woke, her body was connected to machines and her legs were wrapped in casts.

“You did so well.”

That was all I could say.

And as I looked at her, I tried not to look at the machines, the wires, or the casts first.

I looked at her face.

She was here.

She had come back.

She was right in front of me.

Seeing her with my own eyes finally made me believe what the words “the surgery went well” had not quite been enough to make me feel.

My daughter was back.

And despite how frightened we had been, her recovery went smoothly enough that she was able to leave the hospital the very next day.

It felt almost unbelievable.

The day before, I had been thinking about the worst possibilities of general anesthesia, then spending the surgery wishing only for her safe return, and afterward nearly convincing myself that something terrible had happened when I was suddenly called away alone.

And now, one day later, I could hold that same little girl in my arms and take her home again.

Only when we were leaving the hospital did I finally begin to think,

“It’s over.”

Of course, the treatment itself was not truly over.

Life with the casts was only beginning, the correction of her feet would continue, braces would eventually become part of our lives, and there would still be many more hospital visits ahead.

There might also be other surgeries waiting somewhere in her future.

But I was beginning to understand that we did not have to survive every future day all at once.

That day, we had made it through one thing.

For now, that was enough.

Ito-chan, whenever I looked at your tiny feet, I had always imagined the future.

Would you be able to walk?

What would it look like when you stood for the first time?

Would you ever run?

I had spent so much time looking years ahead.

But on the day of your surgery, none of those questions mattered to me.

I did not care whether you would walk tomorrow, or run someday far in the future.

I wanted only one thing.

Come back safely.

Let me see your face again.

And you did.

With your tiny body, you made it through your first big surgery and came back to us.

There were now large casts around your little feet, and we still did not know what treatments would come next or how those feet would grow.

But we did not need to know all of that yet.

We did not need to solve your entire future in a single day.

For now, we could simply be grateful that you had made it through today.

And together, we could go home again.

So Many People by Your Side

🇯🇵Read in Japanese

After Ito-chan came home, she began to change little by little, in ways so small that if we compared one day to the next, we probably would not have noticed them at all.

Her weight and height did not suddenly increase, but each time they were measured at the hospital, the numbers had gone up just a little, and because we were with her every day, we began to notice changes that could never be captured by numbers alone.

The eyes that had once simply stared at us began to follow our movements, and when we brought our faces close to hers and slowly moved from side to side, those little eyes would move along with us.

“She’s watching us.”

Something that simple made us so happy that we would do it again and again, almost as if we needed to make sure that what we had just seen was real.

Her expressions began to change too.

In the beginning, it felt as though she was usually sleeping, crying, or quietly staring at us, but little by little, the corners of her mouth began to soften, she started making expressions that looked almost like smiles, and we began discovering new versions of Ito-chan that we had never seen before.

Then she started making sounds.

“Aah.”

“Ooh.”

We had no idea whether she was actually trying to tell us anything, but every time that tiny voice came from her tiny body, my husband and I would look at each other and say,

“She just talked.”

Of course, she was not really talking yet, but simply hearing our daughter discover her own voice was enough to make us happy.

Her hands began moving more purposefully as well, and eventually she started reaching toward things in front of her and wrapping her tiny fingers around them.

For another baby, perhaps none of these things would have seemed unusual.

But throughout my pregnancy, I had spent so much time thinking about all the things Ito-chan might not be able to do.

Would she be able to walk?

Would she be able to hear?

Would she be able to see properly?

How would she grow?

I had imagined futures that had not even happened yet, filling them with things she might never be able to do, so once we began living together, every small thing she actually could do felt much bigger to me than it probably looked from the outside.

She followed us with her eyes.

She made sounds.

She grabbed something with her hand.

She showed us an expression we had never seen before.

Each change was small, but every time we noticed one, I found myself thinking,

“There’s another one.”

We still did not know how her body would grow in the years ahead, but I was beginning to understand that she did not need to grow at the same pace as anyone else in order to be moving forward.

Ito-chan was growing at her own pace.

That did not mean the worries disappeared.

She still spit up constantly, almost every time we gave her milk, and her breathing could still look rough enough that I sometimes found myself staring at her chest while she slept, watching it rise and fall just to reassure myself that she was okay.

And around this time, there was something else we had begun worrying about.

Her hearing.

At the hospital, we were told that Ito-chan seemed to have some hearing loss, particularly in her right ear, and that she would need more detailed testing as she grew.

We had already been told during pregnancy that her condition could affect her hearing, but hearing that possibility become something that might actually be happening to our daughter was different.

At home, there were times when her response to our voices seemed weaker than we expected, so I would call her name, make a sound, or speak from different directions just to see what she would do.

If she turned toward me, I felt relieved.

“She can hear me.”

If she did not respond, the worry returned almost immediately.

Maybe she really can’t hear very well.

How much could she hear through her right ear?

Was her left ear okay?

Would this affect her when she eventually began learning words?

As soon as one question appeared, my mind would race ahead into a future we had not reached yet.

Before she was born, we had heard the same words over and over again:

“We won’t know until she’s born.”

Somewhere along the way, I think I had begun to believe that once she was born, all the answers would finally arrive at once.

But that was not how it worked.

Some things could only be understood as her body grew, some would require repeated testing, and others simply needed time before anyone could know for sure.

“We still don’t know.”

Those words still frightened me, but as we lived with Ito-chan day after day, we were slowly learning how to live with uncertainty too.

Treatment for her feet was continuing as well.

Both feet had turned strongly inward from birth, and as the weeks passed, we began hearing more about what the next stage of treatment might involve.

There was a feeding tube in her nose.

Her feet needed treatment.

Her breathing worried me.

Her hearing would need more testing.

Without realizing it, I had developed a habit of seeing all of those things whenever I looked at my daughter.

Of course I thought she was beautiful.

But somewhere inside me, there was always another question.

“How will other people see her?”

Around that time, Ito-chan gradually began meeting more of our relatives, and more people outside our immediate household had the chance to hold her for the first time.

Before those meetings, I would wonder what they would think when they saw the tube in her nose, whether they would ask about her feet, and how much I would need to explain about her condition.

But when they actually met her, the atmosphere was nothing like the one I had imagined.

“She’s so cute.”

They simply picked her up, looked into her face, smiled when her expression changed, and talked about whether her eyes looked like her dad’s or whether another part of her face looked like mine.

Instead of staring at the feeding tube, they looked into her eyes.

Instead of focusing on her feet, they watched her expressions.

The feeding tube that I noticed every single day, the feet that would require continued treatment, and the condition that occupied so much space in my mind were never the whole of Ito-chan to the people around her.

Maybe they had never even been looking at those things first.

There was a baby in front of them.

She was tiny when they held her.

She was cute when they looked at her.

And when she made a sound or changed her expression, everyone smiled.

They were simply looking at Ito-chan as she was.

After seeing that happen again and again, a thought began to form in my mind.

Maybe I was the one who cared about these things the most.

The feeding tube.

The shape of her feet.

The ways she was different.

The question of how other people might see her.

No one had said anything cruel to make me afraid, and no one had told me that these were the things I should be worried about.

Maybe I had been worrying about other people’s reactions long before they ever had the chance to react.

Realizing that made something inside me feel a little lighter.

Of course, as Ito-chan grows, she will meet many more people, and I know that not everyone in the world will necessarily see her in the same way.

There may be questions about her condition, and there may be people who notice that her body looks different.

Thinking about that future still frightened me.

But I was beginning to understand that I did not need to fill the time I had with my daughter now with fear about the eyes of people we had not even met yet.

Because right now, Ito-chan already had so many people around her.

She had her dad.

She had family.

She had relatives.

At the hospital, she had doctors and nurses.

There were people who wanted to hold her, people who smiled at her, people who celebrated the smallest changes with us, and people who simply looked at her and said,

“She’s so cute.”

There were far more people on Ito-chan’s side than I had realized, and knowing that gave me a kind of strength I had not felt before.

And through all of this, Ito-chan herself continued growing as though she knew nothing about the worries filling my mind.

She followed people with her eyes, discovered her voice, reached for things, showed us more and more expressions, and slowly gained weight and height at her own pace.

For so long, I had thought,

“I have to protect this child.”

That feeling has never gone away, and I do not think it ever will.

But maybe my husband and I do not have to carry everything by ourselves.

Ito-chan already has so many people around her, and those people are able to see the little girl beyond the feeding tube, beyond the treatment her feet require, beyond all the things that I sometimes cannot stop myself from worrying about.

Realizing that changed something in me.

Ito-chan, you are still too young to know how many people are already standing beside you.

There are people who smile simply because you smile, people who celebrate when you make a sound, and people who become genuinely happy when your tiny hand manages to hold onto something for the first time.

There are people who celebrate your growth almost as if it were their own.

There are still tests and treatments waiting ahead of you, and there are still things we do not know about your hearing.

And soon, another much bigger treatment was waiting for those tiny feet.

I was still afraid, and I knew there would be many more moments when I would feel afraid again.

But neither of us was alone anymore.

Not me.

And not you.

Ito-chan, there are so many people by your side.

And right there in the middle of all that love, surrounded by people watching over you, you are still growing little by little, every day, entirely at your own pace.