Meant to Live - Turner Syndrome Foundation //

Meant to Live

Ivy was diagnosed with Turner Syndrome at 16 weeks in utero. The doctors gave us no hope that she would live. But 20 weeks later, our little girl beat the 1% odds and came screaming into this world and she’s been a fighter ever since. After open heart surgery and 5 weeks in the hospital, she proved that she was meant to live. She’s sweet and equally is feisty and we couldn’t imagine our life without her.

With that being said, our experience throughout my pregnancy was awful. As a medical professional myself, I was appalled at the lack of information and the advice we were given. And after reading other mom’s stories, I’m convinced that there is a huge need for education to not only parents of Turner Syndrome babies, but more importantly doctors. The doctor that told us that something was wrong with Ivy looked at the ultrasound, told us that she has a very severe case of abnormalities and that she would most likely miscarry or be still born. Nothing else. He didn’t mention that although these babies don’t normally survive that if they do, they live a normal healthy life. What he did tell me was that I might as well go ahead and get an amniocentesis because she’s already at such a high risk of miscarriage that the risk of the procedure causing a miscarriage didn’t matter. Here I am, sitting alone in a room with my husband on the phone 7000 miles away, listening to a doctor already write off the child I was just getting to know.

Now if I didn’t have the beliefs that I hold and the knowledge of the medical world that I do, why wouldn’t I choose to terminate my pregnancy after what little the doctor told me? Did you know that one study showed that 78% of women who were carrying a Turner Syndrome baby chose to abort even though babies with sex chromosome abnormalities most commonly do not have life threatening or severe symptoms after birth and what they do have can all be medically managed? It breaks my heart that so many babies are not being given the chance to live becauseof lack of information on doctors and parents parts. It makes me wonder if the 1% chance of survival would be higher if we stopped playing God and gave these girls a chance to live.

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2 Comments on “Meant to Live

  1. Did Ivy have fluid all around her lungs and all through her back? That’s what the doctors are telling me they see on ultrasound. I do not want to terminate but they also told me that at 12 weeks, the fact that it is this severe it heightens the chances of risk to both me and my baby girl.

  2. I am so happy that Ivy made it! She is a true Miracle! I am sorry you encountered so many doctors who don’t know about TS! It is so sad that the medical field isn’t more knowledgeable! Thank you for sharing your story and God Bless you and Ivy!!

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