I Focus on What I Have, Not What I Don't Have Because of Turner Syndrome

I was born in Ohio in 1962. I had some feeding problems as a baby, frequent ear infections, and I was small for my age. I was a normal kid and did average in school. I was a cheerleader and went to dances.

But the older I got, the more disconnected with my peers I felt. I would come home from school and tell my parents 'everyone makes fun of me,’ and they'd say 'well, you're from a small family. You'll catch up some day.’

But I never did. I was always known as the 'short girl' and suffered my share of teasing, but it was never bullying. My bedroom door frame was covered in marks where I measured myself constantly, praying I'd grown. It was the worst thing in the world thinking I was different.

My teenage years were spent denying what wasn't happening. My last two years of high school were spent in vocational school, where I studied medical assisting. By 17, it was obvious I was more than a late bloomer.

I was diagnosed with Turner syndrome by a gynecologist. We were all in shock. Here I was a senior in high school. I had my own car and a part time job. And now I was told I had this strange condition I'd never heard of.

In trying to explain what TS was, the doctor said I 'wasn't totally female.’ I don't think he meant any harm, but those words still haunt me. I was put on oxandrolone (growth hormone) for growth and was told I'd be put on hormone replace therapy when I stopped growing. I was 4'8" and grew two inches. I might have grown more, but I stopped the growth hormone so I could go on estrogen.

Finally, at 18 I was starting to look like a woman! I had my first serious boyfriend not long after diagnosis, and when we started to talk about marriage, I told him I couldn't have children. He didn't seem too upset and said we could adopt. But after a while, we moved on, and I met the man who would become my first husband. He wasn't upset about infertility, and said he didn't want children anyway. About a year into the marriage we separated, and I took stock of my life.

This was 1983. Jobs were hard to find, so I decided to join the Army. I passed the physical, and even the 4'10" height requirement! I went to basic training, then medic school, and I was off to Germany. The divorce was final, and I was ready to move on. It was there I met the man who is my current husband of 27 years, although we would not see each other again until 1990.

All the while, I went through life not thinking about Turner syndrome much. I had never met another woman with TS, and information about it was scarce. While I was in Germany, my mother sent me an article about the first woman with TS who had a baby with donor eggs. I saw a glimmer of hope for me.

After four years in the Army, I went home and started nursing school. In every medical book I got, I looked up Turner syndrome. In my pediatric textbook, I saw pictures of someone who looked like me. I had many of the signs of TS listed. The address of the Canadian TSS was listed. I contacted them and they sent me valuable information. They even had a yearly conference coming up (this was 1987, the year TSSUS was founded).

I will never forget walking into the hotel in Toronto and seeing other women that looked like me! Finally, someone else who knew exactly how I felt. I made friends there that I'm still in contact with today. It was a life changing experience.

In 1990, I graduated nursing school and reconnected with Bill. I moved to Colorado, and we were married in March, 1991. Bill had two kids from his previous marriage, but we decided to try IVF. We saw an infertility specialist and in February 1993, six embryos were transferred to me. (No, today they would never transfer that many!) Two weeks later, I had a positive pregnancy test!

Could my dream be coming true? A few weeks later, an ultrasound showed triplets. To say we were shocked is an understatement. On doctor's orders, I stopped working at 24 weeks. I was huge. I measured 40 weeks at just 27. Around 30 weeks, I was hospitalized with preeclampsia and preterm labor. I spent ten days in the hospital until I showed signs of serious liver failure. So, on September 4, 1993, I underwent a c-section. The boys were small but healthy. Benjamin weighed 4 lbs, Gabriel weighed 2'8", and Robert weighed 1'12". After surgery, I bleed profusely. I was transferred to ICU where I received 12 units of blood, but I continued to bleed. A few hours later, I was back in surgery for a hysterectomy. I received two more units of blood. I stopped breathing and was on a ventilator for two days. If I had not been at a large trauma hospital, I don't think I'd be alive.

Ben came home at three weeks; Gabe and Rob came home at six weeks. We then had three boys to raise. The years went by, and I worked part time in between Boy Scouts, soccer, and school programs.

I got involved in the local TSSUS chapter and attended the TSSUS National Conferences, which saved my life. In November 2010, I suffered a dissecting aortic aneurysm. I went to the ER with the most sudden, worst chest pain I'd ever had. Because I had heard Dr. Michael Silberbach speak at a TSSUS National Conference, I knew I was at high risk. My blood pressure was 210/110.

I was immediately flown by helicopter to the hospital my boys were born in (and where I used to work). My blood pressure was gotten under control and I spent a week there, getting many repeat CT scans. I was sent home on three different blood pressure medicines. I have a CT every year to see if the aneurysm is enlarging, and so far, it's been stable. Doctors don't think it's worth the risk to undergo surgery. I found I could no longer tolerate those long nursing shifts because of the side effects of the medications, so I no longer work.

So, that is my TS story. I choose to focus on what I have, not what I don't have, because of Turner syndrome. I am beyond blessed to be here when we've lost so many TS sisters. I could not have picked out three better kids than my boys. And TS is the reason I got the ones I did. I am blessed to have wonderful TS friends who are truly the only ones who know what it's like. And I could not have better family, husband, and friends who support and love me, TS and all!

Additional Resources

Turner Topic: Patient Guide to Feeding Issues in Turner Syndrome

Turner Syndrome Society of the United States National Conference

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The Turner Syndrome Society's mission is to

advance knowledge, facilitate research, and support all those touched by Turner syndrome.

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