Katie talks about living with Turner’s Syndrome and getting through her parents divorce with a little help from Sugarland and “Little Miss.”
Hi my name is Katie Oliver, this is why I’m a Little Miss….
When I was 5 years old my mom realized something was wrong with me. I wasn’t growing and my hearing was abnormal. She tried and tried to tell the doctor that something was wrong. He looked at my records and too realized something wasn’t right. I was sent to see another doctor 3 hours away in Columbus where they did a genetic test. It was then I was diagnosed with Turner Syndrome, a genetic disorder that affects only girls. Girls with Turners are missing a chromosome. It throws our development off and causes complications with our hearts (we are at risk for aortic dissection and defects.), kidneys ( some girls are born with horse shoe shaped kidneys or other complications), our ears ( hearing loss, infections), etc.
Once I was diagnosed , I underwent more tests. One was a hearing test, which I failed. Upon discovering I was hearing impaired I became the proud owner of my first pair of hearing aides. Since then I have had numerous surgeries on my ears to correct my hearing or fix problems. My most recent was last April, I had an implant inserted to hold a cochlear hearing aide.The cochlear was reccomended after the previous surgery had failed. I got the hearing aide in June,just 2 months after surgery. I have noticed a huge diffrence in my hearing after getting it! 🙂
We thought i was lucky to escape the major complications other than hearing loss, until I underwent an MRI to check for the heart complications that come with TS just weeks before my high school graduation! I was strapped to the bed for 2 hours, I could not move, i had an IV that was not making anything better ( I found out what the IV was for towards the end when they shot a freezing cold liquid through it. I could feel it going through me. weirdest feeling EVER! bbbrrrrrr!). the test was done and as walked past the room my mom and the doctor were talking in, the look on my Mama’s face said it all. I was taken to a room where my IV was removed and they took my vitals again and again. My mom and the doctor were standing there but I was kept in the dark. We just kept watching the numbers and lines on the monitors. There was nothing but silence and occasional beeps. they took the monitors off, I changed, and my mom and went out to the waiting room. I finally got the knot out of my throat and asked her what was wrong… She told me the news… the doctor had found defects. I started to cry. My mom just held me there. I was so scared.
We were called back again and the cardiologist that viewed my scans went over the results with me. I had a kink in my artery (it’s shaped like an hour glass!) and I had a bicuspid valve (two of my valves are fused together). he wanted to see us in his office as soon as possible. he wanted to do an ultrasound of my heart to see how hard it had to work to get blood through the kink in my artery. if it was working hard enough i would need surgery to put a stint in to open the kink (g.r.e.a.t). Mom and I went and got coffee, made phone calls , talked about the results ,and then headed up to the Cardiology Dept. of Akron Childrens Hosp. where we waited for more than an hour. I was finally called back, I laid on the table, watched Shrek… my heart was fine! Thank goodness! I am going to have another MRI in the next few months. Surgery is still a possibility if the results show the kink has gotten bigger.
My life is filled with doctors appt. after doctors appt. i see 3 diffrent Doctors. a cardiologist, an Otolarynologis (ear, nose, and throat doctor), and an Endocrinologist ( growth and other stuff). I was put on growth hormone shots when i was little and have been off of them since I was 12, so I am short for my age (I’m 21 and 4’10”) Thats one reason to call myself “Little Miss” right? 😉
On top of my TS and everything, My parents divorced when I was 10 and there was a time my dad wanted nothing to do with My brother, sister, and I. He would call and tell us he was coming to get us for the weekend, Friday would rule around, we would have our bag packed. He would call and say forget it, Leaving a 12, 10, and 8 year old to wonder what they did wrong. My dad remarried and my stepmom got sick. She passed away from cancer in Dec. 2004. He remarried again and we added a 4th child to the mix! my newly adopted brother Adam ( My new stepmoms son). My relationship with my dad is better but I’m still trying to heal.
The first time I heard “Little Miss” I felt Jennifer was singing about me. the lines “I’ll get tough don’t you worry about me anymore” reminds me of all the tests I’ve been through, medical and emotional. “Little miss big ole heart beats wide open, she’s ready now for love ” Reminds me of healing my relationship with my daddy! The road to getting to where we are now, the point i felt accepted and loved again like a daughter should by her father. But I know he loves me. He’s my dad! I still can’t forgive him though. “It’ll be alright again, I’m ok.” makes me realize that i am going to be ok. whatever comes my way, whether it’s a doctors visit or whatever, I know ” I’m ok” and ” it’ll be alright again” . 🙂
Jennifer’s voice is so soothing in Little Miss and Kristian joining in on the reassurance makes it so special. They are amazing! Love you sooo much Sugarland! 🙂
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