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What You Should Know About Turner Syndrome

Turner Syndrome Overview

Genetic Aspects of Turner Syndrome; Before and After Birth


What you Need to Know.

  1. Prenatal screenings by ultrasound and/or blood tests are not always accurate. An amniocentesis is the only way to confirm a diagnosis before birth. Your baby’s diagnosis will be confirmed after birth with a blood sample for a genetic karyotype test. We hear from people that were initially told their baby would have TS and didn’t as well as those who were told their baby wouldn’t survive and did.

  2. Your medical team will guide you every step of the way and TSSUS is here to discuss your questions and concerns. TS expert doctors and geneticists are willing to speak with someone on your medical team if they have any questions.

  3. Your medical team most likely cannot predict the outcome of your pregnancy but there may be some positive and negative signs that help them make predictions. Based on others’ experiences, if your baby is strong and doing well at 20 weeks, you may expect the same for the rest of the pregnancy.

  4. Turner syndrome is a genetic condition that is not preventable, nothing you did before or during pregnancy affected the baby’s sex chromosomes.

  5. Take extra good care of yourself. Allow others to help you through this emotional and uncertain experience. We have volunteers who have been in your shoes and understand exactly how you feel- call us, we sincerely care about you.

  6. Learn as much as you can about TS so you can make informed decisions.

  7. At birth, a wide range of symptoms COULD be present. The most urgent of these, are heart issues requiring surgery but most of these cases are identified during pregnancy.  

  8. Carrying a baby with TS is considered a high-risk pregnancy, and you may choose to be monitored by a high-risk pregnancy specialist. 

  9. Home delivery is not generally recommended for any high-risk pregnancy, so you should discuss your individual situation with your physician and associated midwife.

Those living with TS want you to know:

  • Each baby born with TS has some characteristics and health conditions related to TS, the key word is some, not all. Although someone may have the same characteristic or condition, some are barely noticeable while others are quite impactful, everyone is different.​

  • Most of us with TS live full, normal lives. Read our insightful, funny, and heartwarming stories.

  • There are medically accepted TS Clinical Practice Guidelines so physicians and health providers know the latest recommendations for care. We also have an active research community.

  • The Turner Syndrome Society of the United States (TSSUS) is a friendly and knowledgeable group of people who want to share their experiences to help you. We also have excellent, experienced doctors and professionals who have dedicated their lives to helping us.

Pregnancy is a very emotional time, full of feelings of anticipation and concern. Reach out to family and friends. Let them be a part of the full journey. Take care of yourself.

Our monthly e-newsletter offers updates on events, news, and stories. 

Turner syndrome action
  • Breathe! You’ve found TSSUS.

  • Please call us at 800-365-9944 or send an email letting us know the best time to contact you. People constantly say, “I’m so glad I called, I feel so much better after talking with someone.” We want to be a part of your journey and encourage you to share updates with us throughout your pregnancy.

  • Join the TSSUS Facebook Private Group for encouragement and insights. You can join anonymously if you prefer.

  • Consider joining our monthly e-newsletter as it offers updates on events, news, and stories

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