Two Sisters with One Story - by Molly Van Gilder

I have written my story of living with Turner syndrome (TS) many times, but I have neglected to share a huge part of my story. My story isn’t complete without talking about my biological sister, Corrie.

Before I tell this story, it is important to know my parents decided when they were expecting my oldest brother that they would not have prenatal testing done on him or any of their future children. They also decided they would not know our gender until our birth. This means they didn’t know the odds my sister and I were facing. I am grateful for that to this day.

My sister was born in July 1982 - 7 years before me. It became apparent fast that she was very sick. It was discovered she was born with a severe heart defect. From what I’ve been told, she had a missing pulmonary artery. Before the heart surgery, my parents were warned there was a chance she may not survive and sadly, she did not make it through the surgery and passed away on the operating table. I have known about her from the time I was old enough to know, and when the conversation began about siblings. I also always add her. As a child and to this day, I simply say “I have a sister, but she lives with Jesus, and I’ve never met her.” I don’t remember not knowing about my beautiful sister.

Our stories became one the day I was born. When I was born, and they saw I was a female, they immediately ran tests on my heart to make sure I didn’t have the same the defect as my sister. Her heart defect wasn’t genetic, and I think they did this at my parents request for their peace of mind. My heart came out completely healthy! This is how I know Corrie (with God) is intervening on my behalf and keeping me safe.

There are other signs of Corrie’s impact on my health and my Turner syndrome journey. My prognosis wasn’t good. My parents were told by many specialists I’d never walk or talk. I also had severe eating issues (which was a major red flag for TS they missed for 7 years). I know Corrie and God are the reasons that I can walk and talk and do everything that the doctor’s said wouldn’t be possible.

When I was 14, which was a life-changing year for me physically and emotionally, our story combined once again. I was sent to a cardiologist as a precaution for something not related to TS, and when my mother got the letter with the name of the cardiologist, she saw it was the same doctor who had operated on Corrie and tried to change her life. Before we left and knew I was fine, I remember telling him thank you for trying to save her life. I can’t describe the peace I had knowing Corrie was there and she was not going to stop being a part of my life!

My sister has shaped how I see TS because I have been blessed to live the life she sadly missed. It keeps things in perspective. I see her in me having TS because I think she wanted me to have sisters on this side of heaven until we are united.

Every day is a blessing. The sun is brighter, the flowers are more vibrant, the trees are more alive in the wind! I want to enjoy life and travel and see so many things, like the vastness of the Grand Canyon. I want to do and all embrace every day for the miracle it is. I want to honor my sister with the way I handle my TS, and with how I live. I want her to look down at her sister and see I am taking nothing for granted.

I imagine her looking down at me at the TSSUS National TS Conferences having tons of fun with my sisters, seeing me graduate from college, celebrating the day we became Aunt’s to our nephew, Zachary. I imagine her being partly why I have classic TS but am overall very healthy. I have no doubt she played a role in me surviving the 2% chance I had of being born alive.

Corrie and I really are two sisters with one story. I can’t wait to continue to see our stories connect and write themselves. I love my sister, Corrie, and I’m grateful for her fingerprints all over my life from the other side. I am grateful for all the signs she gives me to know she is there and for her being the protective big sister! This is very paraphrased story. I could go on about our story!