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Life with Turner Syndrome
Hello Everyone! I am going to introduce myself with a personal story. My name is Gretta DeSantis, I have a son, Garrett, who is 11, and my husbands name is Joe. On February 20th, 2007 we had the wonderful addition of Elena to our family.
During my pregnancy there was concerns for Elena due to my hospitalizations for my asthma, and her size from ultrasounds. I had never had any of the optional tests done during pregnancy because it didn't matter to me if anything were "wrong". Elena came to us as a very tiny package, and was a few weeks early due to the fact that they were concerned about her dropping in percentiles so they induced my labor. She was 5 lbs, 2 oz. and 16 inches long. Her feet were very swollen at birth, but the cord had been wrapped around her ankles several times so we thought all would be fine and the swelling would just go away.
When my family left to regroup and return later to the hospital a doctor whom I had never met came and sat on my bed and told me that the nurses from the nursery had called him to look at Elena because she displayed some features of a syndrome. At the time the word "syndrome" was so SCARY to me. He told me that my daughter would never reach 4'2" without growth hormone, she was sterile, she had heart problems and the cardiologist would be in to see her, and endocrinologist should evaluate her right away…….the rest is a blur to me.
I was alone in a hospital room with entirely too much information to deal with. My fun and wonderful pregnancy and delivery had just been shattered by some strange man in a white coat. I had my laptop with me and kept searching for this "turners syndrome"…..of course finding only the worst of all cases. The nurses would come by and express how sorry they were for the diagnosis even though our genetic tests weren't even ordered yet. I kept looking for support groups, moms, anyone to talk to but really didn't come up with anything. Another society had support groups but none in my area. I knew that I could deal with what Elena had been diagnosed with if I could just understand from a mothers point of view what I was dealing with.
The day I was being discharged a nurse on the floor walked in my room and asked if she could talk to me. She was not my nurse but had heard on the floor that I had a daughter that had been diagnosed with TS.
She told me that one of her sisters had TS and she just wondered if I had any questions. One of the other nurses had told her that I was confused and she just wondered if there was any way that she could help me. My main questions surrounded Elena being able to have children and she told me that her sister had had just had a baby from invitro and all went fine. She told me that it would be hard, but to seek out others talk to but that there were answers out there. She truly was a blessing in a what was a very confusing time for me. She sent me in a positive direction rather than the frightened direction of the alone and unknown that I felt I was in.
All that being said, I am so happy to report that what seemed like a very scary time has turned into a wonderful thing for me. I learned that I REALLY wanted to be sure that no one felt like I did in the hospital with no one to talk to, and no real answers. I have learned that I have so much to be grateful for.
If you need help, or want to speak to a parent of a child with Turner Syndrome contact me at ts@magicgfoundation.org or call (708) 383-0808 and leave a message. I will contact you. |
