DOWN SYNDROME | KNOW THYSELF, HEAL THYSELF
Down Syndrome — When Life Goes off the Rails
Second Entry.
How this child turned our world upside down.
What had I just heard?
There we were, in a room full of emptiness. What had I just heard?
In disbelief, I looked at my child, who was lying peacefully and content in my arms. It looked like a normal baby to me. A beautiful baby.
I searched for clues. I found none.
Only the four-fingered furrow on the hand of my little child couldn’t be denied. But surely that could be a coincidence?
For the doctor, the signs of Down syndrome were relatively clear. For me, they were not.
Something I would never forgive myself.
The nurse said before she left the room, “ They are such lovely kids!”.
I should soon hear this sentence more often, in fact, I would soon no longer want to hear it.
And again I looked at my child.
My gaze stayed on him as I muttered something I would never forget and have never forgiven myself for to this day.
“Mom, I can’t raise him…”
My mother played her role well.
She was there with me and expressed her understanding. Not a word about what would become of the little one and not a word about how wrong it all was.
Was my well-being, as her own child, her priority?
Or was she simply better able to assess the situation and therefore let things take their course? Or maybe both?
There was no opportunity to find out.
I knew nothing.
At that time, being 24 years old, I knew nothing about trisomy 21.
Would my child learn to speak? Would my child eventually be able to walk? Would my child be able to eat alone? Would my child have to wear diapers? Would my child suffer?
I knew nothing.
Boys, that’s what they are.
The night after was not much different from the first hospital nights with my older two children.
Brian was a very dear baby and slept a lot.
I remembered his brother, who had also slept through the night very early. Boys, that’s what they are. I didn’t have much work to do with either big brother Joshua or Brian, for that matter. They were both very sweet and calm babies.
However, the night nurse felt she had to wake us up to get Brian to drink.
Looking back, that makes sense to me, but at the time I was just annoyed. Brian was my third child. And sleeping through the night has never been a cause for concern.
Well, there were a lot of “firsts” with Brian.
“The little one is a little clumsy…”
Breastfeeding turned out to be difficult, but also here I was not very worried. I had breastfed each of my children for 2 years and thus had a little experience with it.
The night nurse, trying to get the sleepy baby to drink, said in passing, “Yes, the little one is a little clumsy…”
She used a Swabian term which meant that the baby was literally too stupid to drink.
In disbelief, I looked at her.
She didn’t notice my gaze, while I was furiously thinking that it’s no wonder if the child is pulled out of sleep. And anyway, what’s the point of trying to force the baby to drink!
In my experience, babies would already show ambitions to drink when they were hungry.
For the first time, I felt something like a “brotherly bond” with my child.
This day would change everything.
It was the following day and the check-up, which all babies get, was coming up.
But this day would change everything.
The child was measured, it was weighed and it was listened to. It was listened to for a suspiciously long time.
Finally, the doctor looked up, “It doesn’t have to be anything, but the heartbeat sounds irregular.”
“Heart defects are common in children with Down syndrome,” he continued.
“But it’s not even certain yet…”
The doctor interrupted, “I would already assume it.”
Now everything happened very quickly.
I had spent the last 24 hours in slow motion, but now everything happened very quickly.
The small-town hospital lacked appropriate facilities as well as specialists, so we were to be transferred to another hospital.
Immediately.
I didn’t even have time to wait for my mother, who was still at work at the time.
Of course, I couldn’t notify Brian’s dad either. In Colombia, it was the middle of the night.
The nurses were packing our things.
I couldn’t yet, after all, I had only been cut open the day before.
The next thing I knew, I found myself in a wheelchair with Brian in my arms.
We were taken into an ambulance.
Was this all really happening?
I didn’t realize at that point that it would be the last time I would see my little baby without any wires for months.
They connected Brian to a monitor.
Brian would be the first child I wouldn’t be able to breastfeed.
Once we arrived, we were admitted directly to the pediatric intensive care unit.
The heart defect was confirmed and the monitor showed an oxygen saturation of only 60.
The pediatric cardiologist explained to me, based on various pictures, what the defect was and how they were going to fix it.
“But before operating, he should gain some weight first.” Such were the plans of the doctors in charge.
Brian would be the first child I wouldn’t be able to breastfeed. But I could pump the milk and he would have it fed through a tube.
It’s very strange, given the situation, that breastfeeding was one of my biggest concerns.
I had a hard time speaking.
Once Brian was taken care of and the doctor’s consultations were done so far, I went outside to call my mom.
I had a hard time speaking, I couldn’t get an intelligible sentence out.
Instead, I felt like I was choking at every moment.
“What’s wrong, Jenny?” my mom asked on the other end of the line full of concern, because of course she was able to tell by my voice that something was wrong.
My mother always notices things like that.
I tried to explain the situation to her and was about to start talking when instead, with the cell phone in my hand, I burst into tears.
Second Entry — end.
🠖 Third Entry (coming soon)
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