Sharing your child’s Turner Syndrome (TS) diagnosis can be challenging. Amy and Chris are the parents of Avary, a wonderful, now four-year-old girl who has TS. They have long been advocates for TS awareness, having navigated the stages of coping with diagnosis, finding care, and parenting a child with the condition. We asked them to share how and when they shared their daughter’s TS diagnosis.
Please remember that every TS patient’s/caregiver’s experience is unique, so consider your child’s/your individual needs when deciding how and when to disclose their condition. This story highlights just one perspective on sharing a child’s TS diagnosis.
In the Beginning
I have always tried to be an “open book,” albeit maybe not in the moment I was going through something (like our IVF). But eventually sharing my own obstacles and experiences helped me relate to others in similar situations. I think this kind of sharing really helps people to connect, support each other, and answer questions.
When Avary was two years old, we could finally answer most of the basic questions people had and began to share her diagnosis. We were never ashamed or embarrassed about our daughter–just uninformed. Once we started sharing and opening up, it gave us an entirely new perspective. People related to us, supported us, advocated for us, and even donated on our behalf.
Learning Along the Way
When the doctors first diagnosed Avary with TS, we honestly didn’t know anything about the condition. How could we share with other people what we didn’t yet understand? We really couldn’t. People would ask us all the time: Why does your daughter have so many specialists, evaluations, and appointments? I honestly wasn’t sure how to respond. At first, we didn’t really share a lot about Avary, because we didn’t know much about TS. Once we started explaining that she was missing an X chromosome, it just led to more questions we couldn’t answer.
Over time, and after seeing specialists more often, we eventually gathered and learned more information. When Avary’s specialists started discharging her (when she was around two years old,) we really started opening up. We were able to share why she saw so many specialists because of TS and/or being born prematurely.
Our Daughter’s Own Awareness
Avary is now four years old. She does not fully understand TS or what it is, but she knows she is special. She understands that she sees several doctors because of her condition and that we have butterflies all over our house because of her. We try to encourage her to say she has TS and try to talk to her about the basics.
Ongoing Awareness and Advocacy
As a parent, I always want to know if there are any issues in Avary’s academic, social, or emotional life. Even when she started going to daycare at nine months old, we had a conversation with the staff and teachers about TS. I often worry that she will be teased or excluded because of her small stature or will fall behind academically. I’m glad we opened up about TS, because one of the daycare providers voiced some concerns, which helped us get early intervention services for Avary. I think sharing our child’s Turner Syndrome diagnosis has only helped us in helping her.