My Journey Through Facial Reconstruction Surgery

I know that this is really a travel blog, but I just had to share some of my own story. Today, April 25th, 2019, marks exactly one year since the hardest day of my life. On this exact day, I was rolled into the operating room where my face would be taken apart and put back together. I heard a voice count down from 10 and that was it.

Just to clarify, I had no choice whether to get this procedure done or not. If I’m being completely honest, I did not want any part of this. When the majority of people hear the words “facial reconstruction”, they think about the cosmetic side. This was not the case for me. There were major medical reasons behind this procedure.

Some people even compared my surgery to wisdom teeth surgery, and that is 100% incorrect. My surgery was deathly. Getting wisdom teeth out is nothing compared to jaw surgery (CAUTION – gory picture ahead!). I can’t even begin to explain how incredibly life-altering my surgery was. There were so many risks and different factors that came with my procedure.

Up until I was around the age of three, I was a relatively normal child. I laughed, played, ate sweet foods, and did everything else that other children did. Once I started elementary school, some began to notice that I was slightly shorter than the other students my age, but nobody thought anything of it. As I aged, my height started to plateau. Going through middle school, everybody around me was growing at a rapid rate. I felt inferior. Sitting at 4 feet, 9 inches at the age of thirteen, I was concerned.

One day, I went to my physician for a check-up. When he measured my height, he compared me to others that were thirteen. He showed me a graph and it turns out that I was in the lowest percentile. He sent me for genetic testing just to rule out any abnormalities. After multiple phone calls, his office reassured my mom that all tests were normal. I went on with my life feeling confident that everything was okay.

Two years later, I was scheduled for an endoscopy because I had some other issues. Every time I ate or drank anything, I would just burp. Sometimes, for twelve hours straight. This was annoying and embarrassing at the same time. So, I got the endoscopy results, which were normal, but that doctor revealed some information. During the conversation, she asked my parents “You do know why she’s short, don’t you?” My parents tilted their heads in confusion. She pulled up my medical records, which indicated some abnormality, but part of the record was missing from the end of the report. It explained that I had a chromosomal defect but didn’t show the diagnosis. She said that the physician who ordered the test would have to give us full details.

That evening, we contacted my doctor’s office with no response. The next morning, we called again because I was ready for some answers. Finally, the physician called us back and wanted to speak with all of us at the same time. I knew that wasn’t a good sign. Since my dad was at work, they setup a conference call and he broke the news that I had a genetic disorder called Turner Syndrome. Turns out they had overlooked the report… the most important medical report that I had ever received. Having just read about this in Biology, I knew exactly what it was. I’m not an emotional person, but when I heard this, I screamed and cried. I felt like my life had just ended – like I had just gotten stabbed in the heart.

Turner Syndrome is a chromosome disorder that only happens to girls. In a typical Turner patient, they are completely missing a chromosome. Of course, when I say typical, there are not many patients with this disorder because 99% of them die during or before birth. This is the real number. “Very few pregnancies in which the fetus has Turner Syndrome result in live births. Most end in early pregnancy loss.” (Copied from www.nichd.nih.gov). Sometimes, I think about how many parents have an abortion because they found out that their baby has Turner Syndrome just because of the stats. That could’ve been me. I also didn’t mention that I have three different DNA strands. Only about 2% of surviving Turner patients have the type that I have. So, of the 1% that survived birth, my type consumes only 2% of that 1%.

With this incredibly rare disorder, there comes symptoms – major ones. Heart defects, kidney problems, osteoporosis, webbed neck, diabetes, facial deformities, slow maturity, and ovarian problems. There are more, but these are the main symptoms. Of these, I have a bicuspid aortic valve in my heart, ovarian issues and I am very short (4 foot 9 inches to be exact). We went to an endocrinologist to see what could be done, but he said my height was where it was because of my age. Had we known two years earlier when the genetic test was performed, I could have started growth hormones. Growth hormones could have potentially given me three or so inches. This doesn’t sound like a big deal, but I’ll be blunt – being 4 foot 9 sucks. It’s hard to drive, hard to reach things, and it is just plain annoying!

Other minor issues that I have include missing a third knuckle on both hands, several double joints (this causes joint pain for me just about every night), and I am hyper-flexible. Previously, I also had a facial deformity. I had a recessed bottom jaw and the roof of my mouth was in my sinuses. Little did I know that I had never eaten correctly. I chewed my food only on my back two molars. This is where the surgery came about.

There was a day a little over a year ago that I went to see my dentist about a tooth ache. He took an x-ray said that my roots were burning out. When he said that I needed to go schedule my facial surgery right after the appointment, I was petrified. He said that if I didn’t, all of my teeth would fall out soon. Directly after the appointment, we went to see a surgeon and I was scheduled for surgery. My bicuspid heart valve would be risky with the anesthesia, but he said he would do it. Even with the risks, I was going to have to do it.

That wretched day came and it came fast. I woke up around 3:30 am and got to the hospital at about 4 am. The time had come. They called my name and I was sent to the back for pre-op. As soon as I put the gown on, every bad emotion in the world struck me at once – anger, fear, sadness, etc. I laid waiting in that hospital bed trying to put on fake smiles for my family. I never cried that morning, I just tried to laugh it off.

The nurse stuck an IV in my arm and took my vitals. Some ten minutes or so after that, the bed began moving toward the most horrifying room in existence – that operating room. No gas, I only got a needle. 10, 9, 8 , 7…and I was gone. Would I wake up? Was this it? I had no idea. After four hours, I awoke, but I guess a little too early. I opened my eyes and the nurse rolling me down the hall kind of freaked out. This was the worst feeling and pain that I have ever experienced. (This is a bit graphic) I was gagging on my own blood. The nurse pushing the bed grabbed a suction and everything was fine.

After I slept another hour or so, I woke up again. This time, I just wanted food. Stupid me forgot that my mouth was splinted shut. I was satisfied when the nurse fed me water through a syringe. The next time I woke up, I was wheeled to my room. Half an hour later, my family shows up. The surgeon also came in and let us know what happened. He said that it took a team of almost twenty people to complete my surgery. Apparently, it was the hardest that he’d ever done. Oh, and he forgot to mention that he did a nose surgery too. I had a deviated septum, so he fixed it while my face was opened up. After talking with him, I finally got liquid food. It was later in the afternoon and almost time for bed. I slept for like two hours before I woke up absolutely freaking out.

I couldn’t talk, so I had to write on a whiteboard. That night, the first thing I wrote was “Mom, help my tongue and throat are swelling.” They really were. My heart rate was dropping by the minute and the night nurses didn’t know what to do. They got ice and gave me my medicine, but the swelling wasn’t stopping. Some twenty minutes or so later, my heart rate finally came back up and the swelling went down. At that point, I knew this wasn’t going to be an easy journey.

After a day and a half in the hospital, I was released. Since I was on prescribed narcotics, I was feeling like a million bucks. This feeling was short-lived though. The medicine from the hospital wore off and the pain shot through me like a lightning bolt. The only thing I did at home that day was sit on the couch and cry. I cried for food, but could only have milk, Gatorade or water for four weeks. I cried because of how I looked, I cried because of pain, I cried because my back hurt from having to sleep sitting up, I cried for my pain medicine, and I just kept crying. My parents tried everything to help me feel better, but nothing worked. This is pretty much how life went for the first week after surgery.

Finally, after two weeks, I felt like walking around our neighborhood. However, I always wore a hat and sunglasses because of the gosh awful swelling (the surgical braces also didn’t help any). Even to my see my surgeon, I would wear a hat and glasses because I looked awful. I probably had to see my surgeon two, sometimes even three times each week. Each time I went, I knew I was one step closer to being better. Sometime in the third or fourth week, I received some devastating news; I had developed jaw infections. One on each metal plate in my jaw bone. These infections recurred nine times. The irrigation process to clean them out was not fun. My mom had to take a needle-like syringe and push saline into the holes where the infections were at least once a day. Finally, after many, many times of irrigation and care, they went away. Next thing I know, I have something like a stomach virus starting to occur. I thought nothing of it. Five weeks later, I was heading to the ER.

I rushed to my new physician. She checked my vitals and said “If your blood pressure was any higher, I would be calling an ambulance to rush you to the ER right now.” She allowed my parents to drive me to the ER. Once I got there, I walked up the the front desk lady and checked in. She looked at me and was literally scared. I was gray and my eyes were glazed over. She made me sit where she could see me and put me on the top of the list to be sent to a room. Because of the amount of antibiotics from my surgery, I had developed a stomach infection commonly known as C-Dif. The doctor gave me two giant bags of fluid and a small bag of glucose. I was in there for seven hours. They gave me a harsh medicine to clear it up. Thank goodness, I did recover. When my surgeon saw me before the infection, he literally said “I am praying for you, but there is nothing I can do.” He continued and said that he hoped that I would recover. I was in such bad shape that my surgeon and his team were going to come to the hospital and sit with me. Thankfully, it was over after that day.

My journey after the C-Dif was finally better. I have returned to my normal life. I hang with my friends, I went to camp to be a counselor, I continued school and finally rejoined my friends and family. In December of 2018, I got my surgical braces off (my second set of braces). After four years total of having braces, I was tired of them. I am finally confident in my smile now!

A year later, I am now sixteen and loving my life. I can breathe better because my jaw is farther forward and my sinuses are better because of my corrected deviated septum. As an added bonus, I look better. My face actually has shape now. I just feel better in general and am incredibly thankful for my surgeon, dentist and orthodontist for successfully completing my surgery. What a rollercoaster of a journey this has been! I am also super excited about continuing our journeys! Not getting to travel for nine months really put a damper on life. So ready to see some more amazing places!

With this major life event came some lasting effects. My jaw snaps, I now have a permanent retainer, there are veneers on two of my teeth (no hard candy or popcorn for me), I have to wear nightly retainers, there is remaining hardware (as seen in the x-ray), there are folds of scar tissue in my jaws that sometimes bother me, and I still can’t take antibiotics because of the C-Dif. These are all pretty minor things, but one huge cloud remains – the Turner Syndrome. I will forever have to work through the symptoms of this dreaded disorder, but I am still here and I am still a happy teenage girl!

Mom’s Perspective

From a mom’s position, seeing your child go through so much pain is very difficult. There were days that I spent endless hours agonizing over what I would make her that would be liquified enough for her to drink through the syringe. I did not see an end to the medications she was taking on a timed basis.   After nine infections, I began to wonder if Ashley was going to pull out of it and if she did, would she look normal again.  I questioned if she would have been better off never having the surgery. I had days where I lost faith in everyone and everything around me because I did not see an end to Ashley’s agony. 

However, now that an entire year has passed, I can look back and see how significant the changes have been for her.  I feel blessed that she had a skilled surgeon and a wonderful orthodontist to walk with her hand in hand through this journey. I am thankful for family who came to the hospital to visit and gave me advice when I had no idea what to do next. I am thankful for the friends, family and neighbors that brought shakes and drinks over and just took time to sit and talk with her. Without their support, Ashley would have felt alone in her struggle to recover. Today she is a beautiful, young lady with a wonderful life ahead of her. 

Dad’s Perspective

Seeing Ashley through this journey wasn’t easy. Beyond the obvious uncertainties that come with any surgery, I knew that no matter what we did that she had to endure the pain. She really struggled with life, her self-esteem and her health. There were days when the continuing pain and infections would sap the life energy from all of us. It felt for awhile as if it would never end. Ashley’s mom was constantly at her side because that’s what Ashley needed. It was hard some days just to get to work because I knew that the real struggle was at home. Mom turned into nurse and I became the after-hours mom and dad. And there were times that we were genuinely concerned for Ashley’s life. When the infections just would not go away and the surgeon said he was genuinely concerned, that was a scary place to be.

As with every great story, the turning point finally came sometime around June. The infections broke, the swelling finally started to go down and Ashley began to act like herself again. Sending her off to camp the week of July 4 was a fantastic milestone for the entire family. In August she walked into her first college-level class as a dual enrollment student and bought home an “A” in December. While many more adjustments would be made by her orthodontist over the coming months, the clouds had finally lifted and life in our home slowly returned to normal. The unsung hero in this story is her mom. Without her caring love and never-give-up attitude, this may very well have turned out differently.

Ashley has endured so much over the past year. But her determination, resolve and fight brought her through and helped write this tumultuous chapter in the wonderful story that is my beautiful daughter. After witnessing this chain of events, I’m extremely proud of her and am confident that she can face pretty much anything life sends her way.