My mom went into labor. She was about to have the 5th of her 6 children.
Four healthy births up to this point. 2 boys. 2 girls.
Here comes the tie-breaker...
I was born. “It’s a girl!” Woo hoo! Girls rule!
Uh oh. There was a problem. Right away I was struggling to breathe. A quick exam by the doctor and he discovered that I had no palate.
It’s not there.
Immediately I get whisked away into surgery. A tracheostomy is performed on my little esophagus. They need to put a tube in my esophagus through my neck so I can breathe. But I am so small.
This is just a regular hospital and they don’t have a tube small enough.
And time is ticking.
Children's Hospital had the tube they needed. But it was a couple of miles away. The only thing to do was to call the police. With lights and sirens, a police cruiser was dispatched to Children's Hospital to pick up the right size tube. Then they raced back to Mercy Hospital to deliver it to the operating room where the tube is inserted and I can breathe.
My palate was somehow attached to different parts of the inside of my mouth and gums. Dr. Sebastian Arena performed the tracheostomy, rebuilt my palate and saved my life. He then sent me home with the tube in my throat and instructions for my parents on how to change and clean it regularly.
The doctor told my parents that I had a Cleft Palate. “The worst of the worst cases”, he said.”….except for the hare lip.”
No hare lip? Everyone with a cleft palate has a hare lip. There was no outside deformity or indication that anything was wrong except for the trachea in my neck. Strange.
For the next 13 months I breathed through this trachea. My parents diligently cleaning and changing the tube. They even instructed my older siblings on how to change it in case of an emergency. And there were emergencies. Several trips to the ER because it wasn’t going in right.
Also, I had no voice. The trachea blocked the vocal cords and I could make no sound. My older siblings were again instructed to look into my crib every time they passed by to see if I was crying.
And after 13 months and a couple more surgeries, the tube was taken out and they put a bandage over the hole left in my neck. And that was it. My family celebrated the day the tube was removed. No more hospitals or medical equipment to deal with and I was out of immediate danger. The hole closed up and life went on.
I grew up and thrived along with the rest of my siblings. And except for braces and a period of childhood chronic ear infections, I had no serious affects from the condition.
It was always a wonder how I could have a cleft palate- the worst of the worst cases at that-and not have that hare lip.
How could I have been spared that?
Fast forward. It's the year 2000. I’m 35 years old.
I am married now and I have a 3 year old son. I happily find out I am pregnant again. At eight weeks I have a miscarriage. A D&C is performed. We keep trying.
A year later, pregnant again. Eight weeks later, another miscarriage. I have to get another D&C. This time though, I am on the bed getting prepped for the procedure and the Anesthesiologist comes in. He is asking me all of the normal questions. Any prior surgeries…etc. I tell him I had a tracheostomy at birth. I was born with a cleft palate.
"Hmmm", He says as he tilts his head and looks at me.
He looks at my jaw. He lifts my chin and turns it left and right.
Then he asks, “Has anyone every told you about Pierre-Robin Syndrome?”
“No", I say quizzically.
He then says, “I think that is what you had.”
Even more confused now I ask, “What?, I never even heard of that.”,
“Yeah, I’m pretty sure that is what it was.” He says very casually.
He then leaves the room to prep for the surgery.
That was the first and last I heard about that from any doctor.
After I got home I immediately went to the internet to look up this so-called 'syndrome'. I type in the search ‘Pierre Syndrome’. That was all I could remember.
And there it was. Pierre-Robin Syndrome.
I read the description and could not believe it. That is exactly what I had!
Pierre-Robin Syndrome:
Pierre Robin sequence is also known as Pierre Robin syndrome or Pierre Robin malformation. It is a rare congenital birth defect characterized by an underdeveloped jaw, backward displacement of the tongue and upper airway obstruction.
-hopkinsmedicine.org
Basically, my chin and jaw were too small and I was choking on my tongue. I needed the trachea until my jaw grew big enough to accommodate it and I could breathe on my own.
I could not believe after all these years and a chance encounter with an anesthesiologist I discovered that this was more than a cleft palate with an unexplained anomaly. This was a syndrome. It is rare and not hereditary and there is no real understanding about how it occurs.
My mom had passed away 5 years prior to me learning of Pierre-Robin Syndrome. I had heard that she always felt guilty about my condition because she thought that she was deficient in Folic Acid when she was pregnant with me. That was something that could cause a cleft palate. If she had taken supplements maybe this never would have happened. I was sad that I was not able to share this new information with her and ease her guilt. I was able to tell my dad though and I was happy about that.
My parents always told me that when I got older I could get plastic surgery to remove the scar on my neck. But I never did. It never bothered me. It was a small remnant of an experience I had of which I have no memory.
After a third miscarriage, at age 38, I finally gave birth to another healthy son.
Now today 57 years later on September 14, 2021 I continually marvel at the strength and patience and perseverance of both of my parents, but especially my mother, in dealing with such a serious condition. I was her fifth child! Her oldest was seven at the time.
There was no warning. And all of this in the 1964 medical community.
Oh and she was just 27 years old.
Happy Birthday to me. All thanks to God who spared me. Thanks to my parents who loved me and cared for me. Thanks to my siblings who didn’t let me cry too long in that crib (I think). Thanks to my wonderful husband and my two wonderful sons to share with and help me live a wonderful life I might never have had. My only wish is that my mom was here to celebrate this birthday with me.
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