My Turner Syndrome Story: Living Beyond the Diagnosis

When I was born, my story began a little differently than most. My mom’s routine lab work during pregnancy came back slightly abnormal, leading her doctor to order an ultrasound “just to be safe.” That ultrasound revealed fluid around my heart and lungs, along with congenital heart deformities. Doctors initially suspected Down syndrome, but further testing gave a different answer — Turner Syndrome (TS).

The news was devastating for my parents. Doctors prepared them for the worst, saying I might not survive — and if I did, my life would be filled with challenges. They warned I’d likely need immediate ope

Jenna as baby enjoying the swing

n-heart surgery and would never live

what they called a “normal” life. But, thankfully, life had other plans.

Early Challenges and Small Victories

Right after birth, I received extensive medical care. My heart was carefully monitored, but surgery could wait — a small but meaningful victory. I did, however, show some of the classic signs of TS: a webbed neck, congenital heart disease, and a horseshoe-shaped kidney.

Because my diagnosis came early, I was followed closely by endocrinologists and cardiologists every few months. For a while, things were stable. But as I grew older, other signs of TS began to appear.

Growing Up with TS

By the time I was five, it was clear I was growing much more slowly than other kids. I fell behind on the growth chart, and my endocrinologist recommended growth hormone injections. I stayed on them until I was 17 — and thankfully, they worked!

When I was six, my cardiologist decided it was time for my first open-heart surgery to correct my congenital heart disease. That summer, in 2003, I went in for the operation. It was a success! I recovered well and could finally live more freely.

A Normal Life — With Some Adjustments

From my surgery through college, I enjoyed a relatively normal childhood and teenage life. I went to school, danced, cheered, sang in choir, and joined drama club. Sports were tougher — I tended to injure my knees or break bones due to TS-related bone weakness — but I found activities that brought me joy without hurting my body.

During my teen years, I also began hormone replacement therapy to help my body produce the hormones it couldn’t on its own. Later, I started thyroid medication to manage hypothyroidism — another side effect of TS.

Even with all that, I never felt limited. I saw my specialists regularly, took my medications, and stayed thankful that, despite everything, I was healthy.

The Next Chapter: Adulthood and Resilience

Jenna recovering from open - heart surgery, 2017

Then came my 20s — and with them, new challenges. My heart needed another surgery, this one more extensive than the first. At 20, I underwent my second open-heart surgery. This time, I fully understood the risks and the seriousness of the procedure. Thankfully, the surgery went smoothly, and recovery, though tough, was successful.

Now, I take blood thinners and get regular lab work, but I’ve been able to continue living my life — finishing school, building my career, and embracing the future with gratitude.

Living Fully with Turner Syndrome

Yes, there have been bumps in the road. But overall, I’m incredibly thankful for my health and the progress I’ve made.

Every woman with Turner Syndrome has her own story. No two journeys are the same — but one thing remains true: we can live full, productive, and beautiful lives.