What I Wish I Would Have Read When I Googled Turner Syndrome

When I was 11 weeks pregnant, we went in for that first happy ultrasound to see our little baby, only to discover she had a cystic hygroma. After the measurements were taken, we were told our baby most likely had Turner syndrome, or Down syndrome.

The 16-week amniocentesis confirmed Turner syndromeAfter giving us the diagnosis, the doctor sent us on our way; we were never sent to a genetic counselor. By chance I knew someone with Turner syndrome, and I had known her for several years. I thought, OK, no big deal — we can do this!

Then I Googled it.

What I read was scary, awful and made me sick. One in 2,000 girls is born with Turner syndrome. Turner syndrome is when all or part of the second sex chromosome is missing. My daughter developed hydrops fetalis at 20 weeks. I had never heard of that, so again, I Googled it. Her chances of survival were slim. I called the office and asked if my baby was going to die. The response was, “Well, we hope not.”

This is what I wished I would have read:

Dear mom and dad expecting a precious baby with Turner syndrome,

Despite any pressure your doctors may have given you, you don’t have to have an abortion. Your baby girl is very special. I will not lie, there is a chance that your baby will not make it. But there is also a chance she will!

You didn’t do anything wrong! This is just a fluke thing that happens; there is no blame to be placed.

You will become familiar with lots of new medical terms and specialists. Your pregnancy will likely be stressful, but please don’t let that take your joy away. She is safe and warm with you, and all she knows is your love.

Your daughter may be shorter than most, and she may have frequent ear infections, and her heart and kidney will have to be checked for any abnormalities. Her hearing may not be perfect, and she may struggle with spacial reasoning (reading maps, math). She may also be infertileYes, I know this is hard to hear as a parent.

But there are parents out there just like you, and the Turner syndrome community is amazing.

Please reach out for support, we have all been through similar circumstances. We understand the excitement and dread at each ultrasound. We will love you and your family.

“Though she be but little she is fierce.” I think that sums it up pretty well. These girls can be happy, witty, smart, and beautiful — and stubborn! They may grow slower than other babies, but that just means you get to cuddle them longer, and that’s a pretty awesome thing.

Hopefully someday when a parent Googles Turner syndrome, pictures of happy, smiling girls and women will pop up.

collage of girls pictures

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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