Sharing a Turner Syndrome Diagnosis with Your Child at Different Stages

Many parents struggle with sharing a Turner Syndrome (TS) diagnosis with their child. When is it appropriate? How do I share it? How much do I share? It is a difficult decision, but there are benefits to sharing the diagnosis and educating the child about their condition. It increases knowledge, self-advocacy, and preparedness for the patient. You are not alone; we at the Turner Syndrome Foundation (TSF) are here to help! Let’s discuss when and what to tell children about a TS diagnosis during early childhood, childhood, and adolescence.

Why Talk About It?

Children and adolescents need to know what is going on with their health, but in age-appropriate ways. Many of those with TS have said that they appreciated knowing about their diagnosis early. That way, they could understand it and be prepared for any challenges that might arise. Ultimately, they need to learn to become their own health advocate, and sharing their TS diagnosis with them honestly will help them do that.
Girl at doctor
Everyday Health

It's Challenging for Everyone Involved

Greater Good Magazine

Parents and caregivers are frequently intimidated by the process of sharing a TS diagnosis, for a number of reasons. For example, some fear how their child or loved one will react upon hearing the news. Others believe that they will be unable to clearly explain a complex medical condition to a child or adolescent. It’s normal for parents and caregivers to feel anxious about sharing a TS diagnosis.

Every person will react differently to their diagnosis. Discussing the disclosure process allows caregivers to make an informed decision about how and when they would like to tell their child or loved one about TS.

What Patients & Parents Had To Say

The TSF blog team recently conducted a survey for individuals with TS and their parents. Read below about their thoughts on sharing the diagnosis.

1. If you are a TS patient, how old were you when you were told about your diagnosis? If you are a parent or caregiver, how old was your child when you told them they had TS?

The average age of disclosure for the survey respondents was 12½. One respondent indicated that they told their daughter about TS throughout her life. Another respondent said they were diagnosed at the age of 19, which is considered a late diagnosis. It is important that individuals with TS be diagnosed as early as possible so they can receive proper medical care and screenings.

2. Thinking about the last question, why did you/your parents decide to disclose the diagnosis when you/they did?

Anonymous mother of a girl with TS

“I was informed by other women with TS not to withhold my daughter’s diagnosis because she will know that something is different about herself and not knowing would cause confusion in her life. Many shared their own experiences that not knowing what everyone else knew was hurtful, and they felt deceived by family and doctors for not including them in discussions about them and their bodies. What I have learned over time is that individuals with an earlier knowledge of their condition seem to have better self-acceptance at an earlier age. In my family, we spoke about TS in age-appropriate language on a need-to-know basis. Sharing information in small nuggets during casual conversations was fruitful because we avoided the “we have to tell you something” conversation.

“My personal suggestion for others before speaking with their child is to become informed about TS to 1. learn what they need to know, 2. allow them time to process their feelings, and 3. seek the counsel of others to prepare yourself for speaking positively and matter-of-factly about TS with your child. As a parent(s) you will not know everything. You will learn, just as I have, that anything in life that you tackle together in a loving and trusting manner is easier and better for everyone.”
Lori, mom of Julie, a woman with TS; TSF Board Trustee; and volunteer

“I wanted her to know from the start so it did not come as a shock to her later in life. In addition, I did not want her to think it was something to be ashamed of.”

Hannah, woman with TS

“My parents have always valued openness. I was old enough to understand the diagnosis when I was told about it. They wanted me to know because they felt it was my business.”

Susan H., woman with TS and TSF Blog Coordinator

“I was not informed by my parents. I found out through a genetics consultation I made myself at age 19. I wish I had known much, much sooner.”

Andrea, parent of a girl with TS
“My daughter was diagnosed, and we had to remove her ovaries, so it was important for us as parents to keep her aware of what was going on and what the surgery was about. She understood the best she could, and now she is 17 and tells us it was the best way. We needed to make sure she knew about the life-changing procedure to be at peace later on, and it worked that way, so far.”
Nicole, woman with TS & TSF volunteer
“At school, they had given us “the talk” about changing bodies, and my mom wanted me to have a better understanding of what TS would mean for what puberty would look like for my body.”
Karly, woman with TS
“It was when I was diagnosed.”
Monica, woman with TS
“Diagnosed at 16, with both parents listening, too.”

3. What do you think are the benefits or drawbacks of disclosing a TS diagnosis to a younger child (younger than when you or your parents disclosed)?

Anonymous mother
“They may share their diagnosis with people they trust, increasing the understanding and support of others in the family, at school, etc. Navigating the social landscape is challenging, and lessons will be learned. The flip side is that people may treat them differently, but if they are genuine friends, they will love and respect them as they are.
Lori
“I think the benefit is that she knew from a very young age that she had TS and was familiar with her differences.”
Hannah

“They will be more self actualized. However, depending on the person, they may always view themselves as different in a bad way. However, the benefits outweigh with drawbacks, in my opinion. If is healthy for kids to grow up with the most accurate view of who they are and how they fit in the world before they are teens. Receiving my diagnoses as a teen meant re-evaluating my identity during a fragile time in life. However, part of me is also glad I was not a kid growing up worrying about my heart and other things.

“Something else to consider is that kids know more than we think they do, especially with the Internet. If there is something different with your child like TS, there is a good chance they are already aware of that fact. At the end of the day, then, they deserve to know the truth. However, I do recognize that everyone and every situation is unique, so everyone has to do what is best for themselves and their families. I support taking to kids about hard things such as disabilities and medical conditions, just in age-appropriate ways, i.e. fist talking about growth hormone shots, and then when they are like 8, 9, 10 talking about puberty, and then maybe family planning differences. I do remember the fist thing I thought upon diagnosis was that I likely would not have kids on my own, and I was already aware of it.”

Susan H.
“I wish I had known much earlier so I could have received proper screenings and treatment.”
Andrea, parent of girl with TS
“I think it is important to be transparent, simple, and clear with the child. In our case, we have had open communication with our daughter, even before her TS diagnosis, so she is mature and was able to comprehend and grasp the main concept of why she was different and how to deal with it going forward. Sometimes not knowing creates insecurities in them, and growing up “in the dark” will not let them understand what their limits are, if any, and be confident with their strengths and weaknesses.”
Nicole
“Although my mom included me in my health care as much as possible when I was even younger than 11, I don’t think I would have understood what TS was if I had been younger. I was allowed to make a choice about growth hormone shots when I was about 6 years old, and I even participated in a medical study for children with congenital heart defects when I was in the third grade, although then I believe I would have been able to young to fully understand TS. I do think it would have been helpful to meet and get to know other girls and women with TS when I was younger and first learning about TS.”
Anonymous woman with TS
“I think it is best to disclose the diagnosis as soon as possible. Keeping it a secret makes it seem more negative and leaves unanswered questions.”
Karly
“I think age-appropriate disclosure is extremely important, especially as children become aware there may be differences between them and their peers. Answering questions along the way with age-appropriate information is vital, as well.”
Monica, woman with TS

“The benefits of disclosing younger than I was is that you probably had lots of doctor appointments and had questions. So parents should answer with age-appropriateness. I was diagnosed at 16 and then didn’t have ant counseling, and my parents didn’t know what to do or say. It was in 1980, the internet wasn’t available. I didn’t take the news well. I feel that if I had had counseling, I might have dealt with the diagnosis better. That would be the drawback–no one to talk to. Once you understand the diagnosis. I feel that’s important, especially if that child is struggling with it. Maybe younger and discussing it throughout childhood, as the child ages, and bits of information at a time, would help. I didn’t have that as an option. At 16, it was a difficult diagnosis to hear.”

A Research Study on Disclosing a TS Diagnosis

TS is a rare condition. Therefore, when parents and caregivers seek advice on how to share the diagnosis, they might feel like others don’t fully understand the situation. Below, we review a study on disclosure, in which patients with TS and their parents/caregivers discuss their experiences. Who better to learn from than individuals who have been in the same situation?

Secret-keeping

In 2006, Sutton, et al. interviewed 97 females with TS. During the interviews, the women were asked questions about secret-keeping. For the purposes of this study, secret-keeping was defined as intentionally withholding all or part of the TS diagnosis from the patient. Thirty percent of the women indicated that information was withheld from them by health care providers, parents, or other individuals. 

In addition, most of these participants said that they learned new information about TS in an undesirable way. For example, some health care providers accidently revealed new information about TS to the patient, assuming the patient already knew everything about their diagnosis. Other women learned more about their 

Scientific American

diagnosis by conducting their own research, learning about TS in academic settings, overhearing conversations, etc. The majority of the women who had these experiences reported feeling angry, upset, and betrayed by their loved ones.

Reasons for Withholding Information

Pinterest

Sutton et al., also interviewed 21 parents of children with TS. Their primary reason for withholding information was feeling unprepared to disclose information in an accurate, desirable way. A lot of parents thought that their child’s health care provider did not give them all of the information that they needed to fully understand TS. 

Note: This underscores the importance of medical providers being knowledgeable about TS and the Clinical Practice Guidelines for patients. Learn more about TSF’s Professional Membership Program on our website.

Which Aspects of TS Concern Patients the Most?

TS can cause a wide variety of symptoms. Therefore, it can be challenging for caregivers to decide what to tell their loved one. Sutton et al., performed another study on TS using the same participants from the study discussed above. They found that infertility was the primary concern of those with TS, followed by short stature, sexual development, and then general health.

Note: Everyone with TS will experience a different level of concern about their possible symptoms. This information was provided to inform caregivers about concerns consistently brought up by 

Kaiser Permanente

by participants in the study. Individual children may have totally different concerns.

Conclusions

In summary, the research study by Sutton et al. suggested that withholding information about the TS diagnosis typically causes the patient to have negative feelings towards the individual who withheld information from them. They also suggested that many parents do not feel equipped to explain the TS diagnosis to their child. Therefore, the researchers concluded that all healthcare workers would benefit from participating in additional training to strengthen patient-provider communication.

Approaching the TS Conversation at Different Stages of Life

Children often understand more than we think they do, and they are able to process more complex information as they age. Parents or caregivers might decide they want to share certain pieces of information with them at different ages. Below, we have some suggestions for sharing a TS diagnosis during early childhood, childhood, and adolescence.

Early Childhood

Talking Parents
  • What they might be concerned about: In early childhood children may question why they have to attend so many medical appointments. They may also pick up on the level of concern shown by their caretakers.  
  • What may be appropriate to tell them: During this stage, it is okay to share general information with your child about their health appointments and screenings. 
  • What you can do: During this stage of development, it is important to speak to children in general, easy-to-understand terms when talking to them about their health care. If you are having a hard time deciding what you want to say to your child, it might be helpful to ask their health care provider for advice. Lastly, it is important to reassure your child if they are feeling unsure or scared about what you are sharing with them.

Childhood

  • What they might be concerned about: During childhood, many young girls will be spending most of their time in school. Therefore, they may begin to notice a few differences between themselves and their peers. For example, they may notice that they are smaller than their friends since a common symptom of TS is small stature. Individuals with TS can also have learning disabilities. Thus, a child with TS might begin to realize that it is more difficult for them to grasp classroom concepts than it is for their peers. 
  • What may be appropriate to tell them: You can divulge specific information about their medical care. For example, it would be appropriate to explain how growth hormone therapy injections help patients with TS reach a greater height. 
  • What you can do: During this stage of development, children should receive more specific explanations about their medical treatment. Remember to speak to them in “layman’s” 
Raising Children Network

layman’s terms so they can process the information you’re telling them. If you are unsure about how much information to share with them during this stage, you could ask their healthcare provider for guidance. It is important to allow your child to ask questions and provide them with honest answers. 

Adolescence

Penn Medicine
  • What they might be concerned about: During adolescence, teenagers with TS might notice that they are not developing like their female peers. Many people with TS experience delayed puberty. They may notice that their breasts are not developing or that they have not gotten their period. In addition, adolescents with TS might become concerned with their relationships. It could be hard for them to relate to their peers if they are not developing at the same rate as them. As teens with TS get older, it can become increasingly difficult for them to understand certain subjects if they have a learning disability. It is common for people with TS to have non-verbal learning disorder (NVLD), which impacts spatial skills and the ability to understand mathematics. Therefore, adolescents that experience such difficulties might be worried about their academic performance or how their intellectual abilities compare to others’.

Older adolescents with TS might also become concerned with having a biological child in the future because many women with TS experience fertility problems.

  • What may be appropriate to tell them: In adolescence, girls with TS should be made aware of how the condition may affect their development as they age and their future fertility. You can discuss different assisted reproductive technologies, such as in-vitro fertilization (IVF) and egg preservation, with your child if they are interested in having children in the future However, it is important that they understand that they may never be able to carry a child, even if they utilize assisted reproductive technologies. If you feel that your child is emotionally mature enough to have a discussion about the miscarriage statistics of TS, it might be a good idea to share this with them. If you choose to speak to your child about this, you can remind them of how special they are because they survived to birth.
  • What you can do: At this stage, it is a good idea to consult your child’s healthcare provider when you are trying to decide what to share with them, especially when it comes to fertility. During adolescence, most girls with TS will start asking questions that are more difficult for parents and caretakers to answer. However, it is essential that they ask these questions so they can receive honest answers and get reassurance from loved ones.

Final Thoughts

Despite what the research (or others) say, every child is different, and parents must use their best judgment to decide what is best for their child and family. There is no “perfect” time to share a TS diagnosis. Some children will be prepared to learn about their diagnosis sooner than others, and that’s alright. Whatever the case, let your child know that you support them, and most importantly, that they are wonderful just the way they are! It is important to be an advocate for your child’s health until they can do so on their own. If you feel that your healthcare provider did not give you the information you need to successfully talk to your child, reach out to them again or seek help from a different medical professional.
Mathematica

Resources

Remember that you are not alone! TSF has many resources to help you with sharing a TS diagnosis with your child. 

  • Tina Talks Turner’s is a book designed to teach young girls with TS about their diagnosis. This can be a great tool for caregivers who are beginning to share information about TS with their child. 
  • The Life Stages page on TSF’s website contains additional information about managing TS during each major stage of life. This page also includes an expectant mother section that offers information to those who are carrying a child with TS. 
  • It is important to be an advocate for your child’s health. You can do this by putting together a knowledgeable health care team. Our website’s Specialized Centers page can help you find care centers that are dedicated to treating those with TS. You can also visit the Finding a Doctor page to learn more about the roles of different specialists and enlisting a medical team that will fit your child’s needs. 
  • Check out TSF’s free webinar recording “Peer Support: Parenting a Child with Turner Syndrome.”
  • Encourage your older child or adolescent to join Star Sisters, TSF’s private, online support group. We have monthly, virtual meetups to ask/answer questions, offer support, and learn from each other.
  • If you are a full-time caregiver for an individual with TS, consider joining our 24/Caregivers group to share experiences with others in your situation.

Sources

TSF Resources

Written by Haley Stambaugh, volunteer blog writer. Edited and designed by Susan Herman, TSF Blog Coordinator. 

© Turner Syndrome Foundation, 2023

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