Amy and Chris are the parents of Avary, a wonderful, now four-year-old little girl who has Turner Syndrome. They have long been advocates for Turner Syndrome awareness, having navigated the stages of coping with diagnosis, finding care, and parenting a child with the condition. We asked them to share the health concerns they encountered in Avary’s early years of life. In this post, they discuss finding the right doctors for their daughter.
Please remember that every person’s experience is unique. This story highlights just one perspective on managing care for a girl with Turner Syndrome. Do you have a story to share? Find out how!
Learning As You Go
Finding doctors and specialists to help your child is not that difficult, but finding the right doctors to treat Turner Syndrome can be a challenge. Our daughter was diagnosed at birth and ended up with about nine specialists during the first two years of her life. We were clueless about Turner Syndrome itself and just knew the basics. As we encountered new doctors and specialists, we continued to learn more information. We found that most doctors and specialists knew something about the condition, but they didn’t have all the answers to our questions. There weren’t any specialists just for Turner Syndrome, so we just learned as we went along.
Finding the Right Doctors
How do you find doctors who know about Turner Syndrome? For us, we were fortunate to have the endocrinologist we did. She has several patients with Turner Syndrome and constantly shares statistics and information. She also put us in contact with our neurologist, who knows about the condition because she has it herself (lucked out on that one!). For Avary’s other specialists, we would ask around, check moms’ groups on social media, call our insurance company for referrals, call doctors to ask if they had any other patients with Turner Syndrome, and reach out to friends and family. Once you start networking (and it does take some commitment and effort), it is amazing to see what others have to offer and share.
Navigating Health Insurance
We are also very fortunate to have the health insurance that we do; it covers second opinions and extra appointments. Don’t be afraid to ask lots of questions about your coverage, the provider network, and co-payments/co-insurance, so you can go into the process with clear expectations. If you don’t have health insurance and need assistance, you may be able to find a resource to help you here.
I highly encourage you to be open about your daughter’s condition, because you never know where it could lead you. One day at work while having lunch, I happened to mention to a colleague that my daughter has Turner Syndrome. She turned to me and said, “I never told anyone this, but I have Turner Syndrome!” I was stunned; I never would have thought that she had it. She is average height, is very smart, has a great career, and has a son. How reassuring was this?! She is incredible! She also referred me to her endocrinologist and put me in contact with other parents of girls with Turner Syndrome.
Learning Together and Advocating
Finding the right doctors to care for your daughter with Turner Syndrome can be challenging. Not all doctors will know the specifics about the condition. In our case, all our doctors were willing to learn and find the answers to our questions. Some advice: you can always switch doctors (we did for orthopedics) and go for a second opinion. In fact, we still have two endocrinologists, because we are still having the growth hormone debate. Second opinions can only help you and your daughter. You have to go with your gut, do what is right for your child, and feel comfortable with your doctors. I also strongly believe in early intervention–the sooner, the better. It was very overwhelming to have to see so many specialists during the first two years of Avary’s life (some of them even on a weekly basis). However, putting everything in place early helped us establish rapport with our doctors and learn with them about Turner Syndrome.
Last month, Amy and Chris shared their daughter Avary’s health journey. If you missed it, click the button below to read it!
This story highlights the complexities of finding medical care for your child with Turner Syndrome. It is not a singular, linear path that all girls take; each girl’s health needs will be unique. Amy and Chris have relied on their health care team to make decisions they are confident in for Avary. They also visit the Turner Syndrome Foundation’s website frequently to find information about health concerns. On our website, you can find Centers of Care for Turner Syndrome, resources such as books, and more.