From a daughter’s heart

Heather and her family

My mother, Paula, wearing  red and myself at 8 years of age on the right.

           My story is a little unique, and hopefully inspiring, to others because as an adopted child Turner Syndrome affected my life in such a big way. 

            My mother, Paula, was diagnosed in the 1950’s with the second known case of TS. Of course at this time little progress in research was made and my mother was treated with ‘experimental’ hormones and medicines. My mother was short in stature (4″8) but lived her life to the fullest and not letting anything compromise pursuit of her dreams. My mother attended college, had a career, and married my Dad at the age of 20. Her biggest dream in life was to become a Mommy and TS was certainly not going to be an obstacle in any way. In June 1973, they adopted a healthy baby girl, (ME), and my mother’s life could not have been more happy and perfect. My mother lit up a room with her smile and very positive, pleasing personality. She was the most caring and loving mother for 13 years of my life. As a child I was unaware that my mother even had TS, whether some of the symptoms were hidden very well from me, or her positive mentality out weighed any pain she could have been suffering.

            One Sunday in March 1986, my mother was having severe back pain to the point she had to be taken to the emergency room. That night my Dad came home and told me we would be going to the hospital first thing in the morning because my mom needed to have emergency open-heart surgery. At 13 years old, I had no idea how the next day would impact my life forever. My mom passed after being on the operating table for one hour. They basically told me in terms that I could understand at that age, she had a leak in her heart and when they tried to repair it, the other side started to rupture as well. My mom had the biggest heart that could no longer function in her tiny body. Life was never the same again. 

            Years later I started to research TS. I had been very sheltered after my loss and my family did not discuss the extent of my mother’s condition. I was astounded by all the traits of TS that my mother had and the comforting validation of why she had them. It made more sense to me at this late age as an adult. The clarity was strong to me, growing up with a mother who had this syndrome and all the reasons why she was an amazing woman.”

Note – Cardiac issues in TS can be treated and managed through ongoing care from a cardiologist. Individuals with Turner Syndrome are urged to have a baseline cardiac MRA. The emergency contact card can alert first responders in the event of a medical emergency. If you have questions, please speak with a doctor for medical advice.
Learn about cardiac issues

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