Sunday, April 21, 2019
You Name It. I Overcame It: My Final Crouzon Surgery
Editor's Note: This article written by Ysa De Lauro was originally published in her student newspaper for their features section series "You Name It, I Overcame It." She shares with us one of the last major surgeries she had and how she made it through with a smile on her face and courage in her heart.
By Ysa De Lauro
Be Brave. Be Strong. Be Fearless. These words are embroidered upon an artsy throw that my family gave me. These are six simple words. Together these phrases produce quite a motivational message. My name is Ysa, and I’m a junior here at South. Like most teenagers I have had my share of challenges. Mine include being born with Crouzon syndrome, having severe to profound hearing loss, and struggling with typical insecurities like doing well in school and finding the right college.
Well here is my story. Waking up the morning of December 13th was exciting. I had waited patiently for seventeen years to come to the end of my series of surgeries. This surgery marked a milestone. I counted it as my eighteenth and nineteenth surgery. What this day meant to me was that I was almost done. I was relieved and excited. Surprisingly for such a major surgery, I wasn’t nervous. I was energized and eager. At seven in the morning, we headed to the hospital. It was my mom, my dad and me. We checked in the hospital. Ironically, I had just been there eight days before due to an endoscopic nasal surgery. That was a simple procedure compared to this one.
I waited patiently. I was all smiles anticipating the outcome of this day. They called me back to presurgery, took my vitals and added another two bracelets identifying me and my allergies. I changed into a pale blue hospital gown and dressed my feet into fuzzy cat socks, which I got plenty of compliments from. I met with the administrating nurse that gave me a synopsis of the two upcoming procedures. The first was a tumor on the right side of my forehead that resulted from a surgery when I was two. There was a hole in my skull, which the neurosurgeon would repair and use a bone graft from skull. My second procedure was a midface advancement of twelve millimeters. This would drastically change my bite and overall appearance. Altogether, these procedures would take approximately nine hours.
Shortly afterwards, I had two IVs (in the vein) and one arterial line (in the artery) administered. This to me is the most stressful and scariest part. I absolutely hate needles! So to me the worst was over. Well, kind of. Now, I was wheeled off to surgery. This is what I remember from that day.
However, ask my parents their version of this story and they would have a very different one. My parents would sit in the waiting room, worrying and anxious. After the first hour or so, my craniofacial specialist came out to inform them that the first surgery was going well, but and here is the but, the neurosurgeon insisted that they would have to shave my head. This was devastating news to them as they had no prior knowledge and greatly feared my reaction.
My hair had been my pride and joy. I used to love styling it and I used to love buying new products that changed the texture of my hair. It was something I looked forward to every morning, deciding what hair style I would wear for the day. My mom asked me while in the hospital if I wanted to wear a wig, but I said no. Because the girl with the long hair was gone. Because I realized that I didn’t need to hide behind my hair anymore. Because after looking at myself for the first time in the mirror at the hospital, I didn’t see myself. Instead, I saw this beautiful, strong, confident young woman that wasn’t afraid to show the world who she was. My short hair exposed all of my scars from my previous surgeries, so I was able to show the world all of the battles I have fought. This surgery has helped me find my inner beauty.
Then the second punch in the stomach, if the craniofacial specialist couldn’t advance my midface out enough, they would need to attach a metal contraption called a halo. This would be an external device that I would wear for approximately three months. I had this when I was five. Again, this was the first time that this was discussed. So my parents agonized over the news and did their best to be patient and calm. The neurosurgeon eventually came out with the news that the first procedure was complete and successful. So now it was the craniofacial specialist’s turn. The incision was ear to ear (kind of like a headband across the top of the head) and he was to cut through my midface, free it and advance it twelve millimeters. He would align my teeth and then set everything in place with four titanium plates.
Somewhere during this procedure, another specialist entered the picture. It was the ENT. When the craniofacial surgeon exposed my nasal cavity, he had retrieved the ENT. It was only eight days prior that the ENT had attempted to remove a polyp that was in my left cheek. He had been somewhat successful, but was unable to remove it entirely. Well with the cavity exposed, the ENT removed the entire polyp. This was a bonus and meant that I would not have to proceed with the surgery that was tentatively scheduled for the upcoming summer. The surgery ended about nine hours later. All three procedures were successful and now the tough part: recovery.
Still unconscious, I was wheeled into ICU. The plan was that they would keep me unconscious for several days. The thought was that they could control the pain and give my body a chance to start healing. Well, that was the thought. However this was not the case. During the night, I became quite agitated. The night nurse said that was common. At 5:30 a.m., I began to gesture and my dad immediately stated that he thought I was trying to write something. Understand that my eyes were swollen shut: I was hooked up to a multitude of machines. There was a main drain coming out of my head. In addition, I was intubated (meaning I had a huge tube in my nose to help me breathe) and my mouth was fastened shut with heavy rubber bands that were attached to my braces. I had no way of communicating. My dad rustled up a paper and pen. I wrote, “I can’t see.” The nurse was astonished as were my parents as I was to be in a sedated state with no recollection. Obviously this wasn’t the case. I was aware of what was happening. Actually I feared that I might be blind. My parents later admitted that they shared those fears.
So this was the beginning of several stressful days. My pain was regulated by an endless series of medication. I communicated my concerns and fears through pen and paper. I wrote, “Will I ever get better?”, “No more surgeries. It hurts.” and “Are we leaving today?”. I struggled with the idea that I wouldn’t be able to see (my eyes were extremely light sensitive) and swollen shut. They attempted to extubate (remove my breathing tube) without realizing it was sutured in. One of my IVs was compromised so my hand literally blew up the size of three normal ones. Then I came to the realization that my hair was gone. My head was wrapped up. My parents said they were dreading this conversation, but was amazed at my calm reaction and grace at this news.
So fast forward, five days. Four days in ICU and one day in step-down ICU, and after some serious pleading, I was discharged to go home. Life was good. No, life was great. I was going home. I had severe swelling in my face, my mouth was fastened close, and numerous scars exposed from this surgery and the past. I was the spitting image of the character Eleven on Stranger Things. I was scrawny (living off of liquids which I ate through a syringe), had a fresh crew cut (thanks to my neurosurgeon), and a constant drainage of blood through my nose.
So why am I sharing this story? What did I take away from this experience? I learned that my hair didn’t define me, even though previously it had been my pride and joy. I learned that my family, my friends and my supporters are truly precious. I learned to be strong and stand tall when faced with constant questions and stares. I learned that by sharing my experience, I have encouraged others to find their own strengths. I have learned that I can endure. I have learned that I am indeed, strong, brave and fearless. I am hoping that you too will learn that you are stronger than you realize.