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My Parents Did as They Were Told - They Took Me Home And Loved Me

I was born outside of Philadelphia in 1965 - in a time before amniocentesis, ultrasounds, and genetic testing. My parents were of normal child-bearing age. My dad was 27, my mom was 24. There was no reason to believe that they would give birth to a daughter with Turner syndrome - but here I am! (note: parental age in not a factor in Turner syndrome).

I'm not sure what gave it away to my doctors - it could have been the webbed neck, the Jimmy Dean breakfast sausages where my fingers and toes were supposed to be, or the edema in my hands and feet. My mom said holding my hand was like holding a little baseball mitt. They did a blood test, and confirmed I had Turner syndrome.

Back then, TS was given a strong link to what they then called "mental retardation." They told my stricken parents that, in addition to multiple health issues, including possible blindness and deafness and a variety of organ dysfunctions, I was likely to be severely "retarded.” They advised my parents to take me home and love me as much as they could for as long as they could, and then when I got to be too hard to manage, to find a suitable residential institution that could care for my needs.

My parents did as they were told. They took me home and loved me as much as they could, and it wasn't long before it became apparent to them that I was not only NOT "retarded," but that I was actually fairly advanced in some areas. Doctors were mystified at how well I was developing. I was a healthy, "normal" li􀆩le girl, until was about 7. I was short. This didn't bother me at all - I got to be line leader all the time. I got the front-and-center spot on the stage when I was in a school show, and I got lots of attention.

But I noticed at one point that I was not only the shortest one of my peers, but that I was startlingly shorter than they were, and this did bother me. My parents took this as a cue, and I went to see a pediatric endocrinologist who started me on oral hormone therapy. I did grow quite a bit in a short amount of time. I reached the height of 4'11".

Once I plateaued, I was given cycles of estrogen and progesterone to simulate a menstrual cycle, which I guess was meant to help me feel like a regular teen girl (I could have done without it, to tell the truth). It might have also been to sort of prep my uterus for the possibility of one day bearing my own children when the technology became available.

I did that. I married a patient and loving man, and through the miracle of IVF, I gave birth to twin sons - two of the most wonderful people to ever walk this earth. I cannot look at them now, 20 years later, without being completely awestruck.

I do face some Turner syndrome related complications, though. I have vision impairment, hearing loss, hypothyroidism, arthritis hypertension, heart irregularities, breathing issues, and I can't get good-looking shoes that fit my elephant like feet- but I am making sure my doctors are educated about Turner syndrome and that I'm getting the very best medical attention I can.

My best advice? Manage your weight. Any extra weight you carry - especially as a short person - will compound any ailments you might acquire, whether directly related to TS or not. I'm so happy to have discovered the TSSUS website and to hear your stories! It's been so great to know of all the beautiful butterflies who make up this world!

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