My Hardships and Blessings

Hi, my name is Carrie Odom. I was born and raised in Fort Walton Beach, Florida, and have one older sister. I was diagnosed with Turner syndrome at ten years old. Here is my journey with Turner syndrome.

I was born March 10th, 1983 to Mike and Debbie Fleischman, weighing 5 pounds 4 oz. My parents say I was born very sick with ear infections and pneumonia. I was hospitalized for the first three weeks, and they almost lost me several times. I was blessed to not have any major issues afterward; only constant inner ear problems. With chronic ear infections, I had two sets of tubes in both ears by the time I was 4. When I was about 5 years old, my parents noticed my feet grew out a little. So, I had to get some therapy to help them grow normally. My glands under my ear would constantly swell, so I had to have a small procedure to help with that at 6 years old.

Later on, I found out my hearing was slightly low due to a hole in my ear drum. At ten, I had my first ear drum reconstruction surgery on my left ear. The other reconstruction surgeries were at ages 12 (on the left), 15(on my right), and 19(on my left). The last one, they though one of the small bones in the inner ear was missing. Turns out, it was covered up by a lot of infection. My hearing didn’t improve after the last one, so by the time I was 20 I had my first hearing aid. I needed them in both, but my family could only afford one. It was difficult to adjust, both physically and emotionally. I tried to hide it, and would never tell anyone. I thought to myself, I am way too young for a hearing aid. I was also scared of losing my hearing in the near future. A few years later I was able to get the second. After a little while, I appreciated hearing better and did not care what others thought anymore. I am thankful and blessed to have them.

Growing up was hard for me socially. I was always the real short girl with wild curly hair. I was raised in private school, which meant small classes and most of the same kids every year. I was picked on and teased a lot all throughout elementary and some of middle school. I would come home crying about it all the time. My parents helped anyway they could, consoling me and telling me they would buy me height if they could. I would yell back at the kids, and try to stand up for myself, but it didn’t stop it. I was a feisty one too, I even hit a few boys that wanted to constantly pick on me. My grades were never good in certain subjects, so I was held back in 4th grade. Nature and the outdoors were my relief. Every weekend my daddy would take us to his hunting camp in Alabama. I loved it so much. I started to hunt with him at four years old. It was great growing up being a little bit of a tomboy country girl.

At ten years old, I wanted to know why I was so much shorter than my peers. We talked to my pediatrician. She said it was just nature; I had short family members, so I was just going to be short. My dad asked a lot of questions, and my growth chart was brought out. She explained to my parents how they mark it. My dad pointed out that, based on what she explained, it was being marked wrong. She sent me to a wonderful pediatric endocrinologist, Dr. Helen Shaing. She said she knew the first time seeing me that I had Turner syndrome. She was keeping up to date on what she knew about Turners and would always keep us informed medically. Keep in mind, this is 1993, so it was not much compared to today.

She immediately got me started on the growth hormone Nutropin. I gave myself that shot every night until I was 16. It was not easy at first because I hate needles! It was a lot better being a few inches shorter than my peers, not half a foot or more. Around 15 and 16 years old, it was a little hard in high school. I looked so young and had a lot of weight gain from the growth hormone. I was only about 4ft 8 in., weighed about 140 pounds, and I looked like I was 12, not 15. By 16, my growth potential was met, so hormone replacement therapy was started.

Between no more growth hormone and aerobics classes, I lost about 20 pounds by the end of my junior year. It was great to go through puberty and look my age! I had a few more friends, and even had my first boyfriend at 17. Not many friends knew about my Turners. Only when asked why I was so short would tell them what I was diagnosed with, and what little I knew about it.

When I was 16, my nephew was born. Even though I always enjoyed playing with younger cousins and little kids, he changed my life. I knew I had a passion for working with kids. I started getting into child care at a local daycare at 17 years old. I went on to try college, but some classes were difficult, and after failing the same class twice, I stopped. Not really knowing a lot about it, I kept TS really low key in my life. I didn’t know how else to deal with it.

I asked my doctor if she had other TS patients, and shared that I was interested in meeting one. But, I never heard anything from any one. I did a little bit of research on TS and briefly spotted something on the Turner Syndrome Society of the United States (TSSUS). Nothing was in my local area so I just forgot about it. I just kept living and decided TS did not have me. I was going to do things like anyone without TS would.

I met a great guy in 2005. After dating a while, I told him about being diagnosed with Turner syndrome, and what I knew about it. He didn’t really care if it was going to be very difficult to try to have our own children. We got married in September of 2007. In Early 2010, we decided to start looking into a fertility specialist to see what it would take.

Unfortunately, we lost my father in law in Aug 2010 in the middle of fertility doctor appointments. Emotionally, we were at stand still with fertility, and we had to move to Alabama and help his mom. Before we had the chance to even talk about finding a fertility specialist there, life threw another major curve ball. My husband passed away unexpectedly in September 2011. Between 2008 and 2012, I lost 11 family members. Especially after my husband, I asked God why.

Why do I always have so many bumps in my road, why, after it was so hard finding someone, did I lose my husband, why do people who don’t deserve kids (those who abuse and neglect them) have them? Why! I did a lot of praying. Having the awesome church family in Alabama helped a lot also. I had to change my thinking, I started focusing in my blessings, and the positives. I realized there is a reason God has me on this path. Even if it’s just to be a testimony that no matter what. With God you can make it through anything.

I had to find me again, and pretty much start over at 28 years old. The six years I was with my husband where spent helping him through his medical issues and fighting the VA with him. He was an Army vet medically discharged from an injury just before I met him. So, after a year or so of getting back on my feet, I knew something was missing.

I had yet to meet anyone else with TS, nor did I know a whole lot about it. In 2013, I found the TSSUS again. I noticed the conference was going to be in Jacksonville, Florida the following year. I was so happy it was so close to me! I became a member, and began researching local contacts. I found a TS mom and emailed her. She has a daughter about my age who lived close to me! We met for the first time in April 2014. Around the same time I was meeting others on Facebook. I got to chatting and discovered at least 5 others in my area. Five out of seven of us met for a group dinner that May.

I cannot even put into words what that year did for me. I felt like I found a part of me that I never knew. This explains why I used to feel lost or incomplete. Four of us went to the TSSUS National Conference that year and I learned so much! Thank God I was able to go and learn so much more, and what to look out for health-wise.

One of my local sisters and I started a local TSSUS Resource Group by the beginning of 2014. She was a force to be reckoned with on having a passion to help other with TS. She and I both did not meet any other TS families or ladies until our 30s. We didn’t want anyone else to go through that. The following year, she was voted on to the TSSUS Board of Directors. She was also diagnosed with a heart defect around the same time - one that should have been caught in child hood. She had to have open heart surgery shortly after diagnosis. Sadly, she passed away a week later from complications; something we hear too much in our community. I was honored to be able to take her place on the TSSUS Board of Directors. It was such a blessing and an eye-opening experience. I have met so many wonderful ladies and families through the TSSUS.

Over the last two years, I have been diagnosed with asthma, thyroid issues and osteoporosis, on top of dealing with back and hip issues. I am working in my parent’s office for their local business. I’m not able to work in child care for the time being. But again, I am blessed I have the ability for medical help, and that the medical issues I have are not more severe.

I am going to embrace who I am fully. Instead of keeping TS on the back burner because no one really knows about it, I am going to help spread awareness and help others. I don’t want any other butterfly or their family to go through TS alone. I want physicians to know where to go and get information should they not know a lot about TS, especially after surgeries.

Life may have its challenges and unwelcomed surprises at time, but I know through Christ all things are possible. I am blessed to be part of the 2%. Many TS girls struggle at times, but I truly believe we are all here for a purpose.

GOD Bless!

Carrie Odom is a past board member and dedicated TSSUS volunteer. She is a mentor and advocate for those with TS and the Turner syndrome community. She dedicates herself and her time to the TSSUS North Florida Panhandle Resource Group where she serves as its leader. Carrie is a familiar face on social media, where she can be found offering support, resources and kind words to girls and women with TS and their families.

Additional Resources

Become a Member of the Turner Syndrome Society of the United States

TSSUS National Conference

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