Whether your daughter is 2 days old or 18 years old, hearing that you daughter has Turner syndrome may seem scary. Everyone generally responds with “What is Turner syndrome, I’ve never heard of that?” Take a deep breath and exhale. Your mind is probably spinning with questions and concerns and we’ll address the main ones in this section as best we can. Then we hope you'll contact us for more personal information.
TSSUS has supportive and knowledgeable volunteers that want to share their experiences with you as well as help you on your journey of learning about what TS means to your family. Please contact our office at 800-365-9944 or email: tssus@turnersyndrome.org and a volunteer will contact you directly.
Your daughter has been diagnosed with a disorder that has many different characteristics and health related issues but she’s the same girl that she was last week. This new discovery will challenge you on many levels but it’s like any new challenge you must break it out into many steps. Take each day at a time and focus on the present time, the future has much to offer and each generation comes with new discoveries and opportunities.
Q: Is my daughter going to be okay?
A: Yes. The primary concern is to follow her physician’s recommendations for the medical tests that she will need. Health issues range from a person having very few issues or many and those issues may be mild or serious. Issues that seem serious to a parent are often common to physicians so keep it all in perspective.
Q: Could the parents have prevented the chromosomal abnormality of Turner syndrome?
A: There is absolutely no evidence or research that suggests that a parent’s age, behaviors, thoughts, environmental exposures, etc. contributes to TS. Women of all ages and women from all parts of the world have babies with TS.
Q: Should I tell her she has TS?
A: A survey of our members who are adult women with TS highly recommend that you talk to your daughter, age appropriately, about what is going on. The members that were not told about TS and found out about it on their own felt betrayed. Those that heard the news from a physician were disappointed and wished that a parent had discussed it with them first. Psychologists recommend that you have many small talks over time and answer questions honestly. There are two resources on the web store, one is Coley’s Story and is about a 4 yr. old and her journey created by our marketing diretor. The other is the TS Teen Guide created by our Society. We encourage parents to read the booklets along with their daughters and allow them to ask questions at their level. If kept a secret, your daughter may wonder if it is “bad” to talk about or feel ashamed. Additionally, it’s a good time to talk to her about what she may or may not want to share with her friends. My daughter wanted to take her growth hormone shot with her to Kindergarten as the item that represented how she was unique! Even at age 5 my daughter was “determined” and wanted to do things her own way. Each girl has her own unique personality and our girls with TS are no different.
Q: Any helpful advice for adjusting to the changes?
A: Work as a team with your daughter. Allow her to make some decisions so that she feels a little more in control during this busy time. Offer options if possible such as when she would like some appointments scheduled so she doesn’t miss important school tests or classes, offer to look information up with her or allow her the time to take it all in without talking much about TS. Suggest she write questions down for her doctors if she’s not comfortable asking them and remember that physicians don’t always have the best bed-side manners so decide if you want a doctor to answer her questions or if you want to talk about some of them beforehand and after. The diagnosis is confusing because on one hand the odds may seem harsh, such as in the case of getting pregnant but on the other hand girls with TS have become unexpectedly pregnant (rare but it happens). You and your daughter may grieve over the diagnosis and aspects of TS as in any situation that is unexpected. Allow the process to happen and realize that time will put it all in perspective and there will be lots of opportunities to worry in the future so focus on this week or this month only for right now. Many of us “seasoned” Mom’s remember when our girls said, “Mom, you’re making all of this out to be such a big deal, I’m fine, and stop worrying so much!” Those same Moms’ have lots of advice to share if you need it!