What the Doctor Told Us About Her Condition
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.