Turner Syndrome Foundation
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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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.
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!!
Thank you for sharing your story. You are amazing to have the faith that everything was ok and it was. I’m 18wks pregnant and found out my little girl also has turners. There is a lack of information and support networks and I commend you for starting something. Wishing you all the best x
I was told on New Year’s Eve over the phone that my tests came back abnormal. The nurse said she couldn’t tell me what was wrong but that I had to schedule an apt with a genetic counselor. My world was turned upside down. I tried to schedule a meeting and they didn’t have any openings for over two weeks. I sat on my bed and cried. How could they tell me this on New Year’s Eve, two hours before the doctors office closes, and all offices would be closed on New Year’s Day that was on a Friday. It was unfair and unprofessional. Luckily with a lot of tears and calling a bunch of places, a counselor called me and told me it was turners syndrome.
I felt most of my talks with the genetic counselor were about the option if aborting. It was brought up every phone call. I felt like there were no positive calls. I went through both cvs and amniocentesis.
My baby girl was born 7-14-21 and she is perfect. I would post a pic but I don’t see an upload option. Feel free to reach out with any questions regarding my experience etc..
Could you please message me on facebook my daughter is 18 weeks and we just found out her baby girl has it and the are telling us she has very little chance of survival
Hello Virginia. We are here to help. To better assist you, please complete a patient and caregiver registry: https://turnersyndromefoundation.org/research/registry-2/
my sweet amazing grandaughter has it we were told the same thing she just turned 14 and is a 8th grader this year straight Ain school on yearbook staff and beta club God has a purpose and a plan trust in him
Hi Caitlin,
I gave birth to my gorgeous baby girl on 7/03/22.
I took her to see the doctor just a few weeks after she was born as I noticed mild swelling on her left foot.
Cut a long story short, the paediatrician told us he suspected she may have Turner syndrome and we are now waiting on her blood results.
I have been feeling so so low and worrying myself sick after reading all of the health problems that can be a result of Turners.
The internet is not all that helpful when trying to get accurate information.
I would love to hear about your experience so far with your baby girl. I hope you don’t mind me asking!
Kind Regards,
Sophie.
You made my day after crying like hell. I am 12 weeks and the Nipt result turn out that my baby has Turner syndrome. I want to keep her. I don’t have bleeding problem. I could not make appointment with specialist right now. I am terrifying what he gonna tell me. Do i need to do other test? They said Nipt is 99% accurate. Were your baby born before due? Does she has heart problem or other organs’ problem? I would love to keep in touch with you
Hello everyone, my name is Nicole. I was born with turners and I wasn’t diagnosed until I was 21. Why I never got tested was beyond me. My father knew something was wrong when I didn’t have my period. My mother dismissed it due to me being premature. My late husband and I wanted to start a family, so he urged me to see a obgyn about my reproductive to see what was wrong. Thankfully they told me, but I was disappointed that I wasn’t diagnosed when I was born. Other than that I was a healthy baby with some learning disabilities and was born partly deaf. Thanks for sharing your stories and I’m still getting to know me and my syndrome.
I found out at 12 weeks my baby girl had Turner’s. I was offered termination a few times thru out my pregnancy but knowing there was a chance I couldn’t and I am so glad I did not. I have a beautiful 2 month old now. I couldn’t imagine not giving her the chance to fight. I’d love to help spread the knowledge of this little known syndrome in which there is always a chance!! These little fighters deserve the chance to know what life is.