Frequently asked questions related to a prenatal diagnosis:

 

 

Q:  Could the parents have prevented the chromosomal abnormality?
A:  No.  There is absolutely no evidence or research that suggests that a parent’s age, behaviors, thoughts, environmental exposures, etc. contributes to TS.  Girls at age 16, mothers from New Zealand to Japan, women that desperately want a baby and those that don’t all have the same chances of having a girl with TS.  

 

Q: Will my baby survive?

A: This is a hard question to answer. Research shows that most babies conceived that have TS will spontaneously miscarry but it’s estimated that 1 girl out of every 2,000 baby girls delivered does have TS. There are many girls being born with TS despite the odds. Many women in our group were told that their girls would not survive another week, and definitely not the next, etc. until the doctor delivered their healthy little ones with disbelief. Despite technology and advances in medicine, it’s hard for a physician or technician to predict the outcome of a pregnancy unless the baby in utero experiences negative organ issues.

 

Q: What can we do to increase the chances of survival of our baby?

A: Follow the recommended guidelines for any pregnancy. At this time, aside from a possible heart surgery in utero when the baby is close to term, there are no special procedures or actions a parent can take to change the course of nature.

 

Q: The physician suggested termination, what should we do?

A: You are doing the right thing by getting all the facts about TS. Many physicians are simply not knowledgeable about Turner syndrome, so it is best to do your own research.  By connecting with our online community or on social media groups, you will be able to hear from others who have been right where you are and are eager to offer information and support. We are a Society of women with TS and parents of girls with TS.  We want the very best for all those with Turner syndrome, and believe that life is precious and knowledge is power.

 

Q: Will the baby be okay after she is born?

A: TS is similar to a spectrum disorder in that there is a large range of abilities. In the general population there are very few people that can’t live independently and there are very few people that are super intelligent but there are many people with different abilities in between. The same is true with Turner syndrome. Some women never live independently, while others are physicians. Most others fall somewhere in between. The most popular field of work for those with TS is the healthcare industry, and  the second most popular is education. Medically, issues related to TS are screened for before the baby leaves the hospital and treatment of any known problems will be discussed with the parents. Cardiac issues are the #1 medical need of emergency surgery for those with TS and although some girls and women with TS do not have heart issues, others display their scars as a badge of honor.