Morgan’s Turner Syndrome Story

Turners Syndrome
Morgan, the day she received her glasses. 3 years old.
Turners Syndrome
Morgan, at the Duke Medical Cardiac Center, 18 months old.

In September 2015, at my youngest daughter Morgan’s 18 month well-baby appointment, her pediatrician noticed that she had not grown in height since her 15 month well-baby appointment. After doing blood tests, Morgan came back positive for hypothyroidism and for Mosaic Turner Syndrome. So what exactly is Turner Syndrome (TS)? Turner Syndrome is a disorder that affects all or some of the X chromosome in females. Mosaic Turner Syndrome is when only a portion of the X chromosome is altered or missing. The missing or altered X chromosome is commonly associated with short stature and a variety of developmental and medical problems. Some of these medical problems can include: heart, hearing loss, high blood pressure, vision, kidney, auto immune disorders, infertility, learning disorders, skeletal problems and pregnancy complications. Physical traits can include but are not limited to: short stature, low set ears, wide, or webbed neck, broad chest with widely spaced nipples, arms that turn outward at the elbows, and slowed growth. Every case of Turner Syndrome is different and symptoms will vary for everyone who is diagnosed. Regular checkups from medical specialist will help to ensure healthy and independent lives. Ok, back to our story. After receiving the phone call from her pediatrician that Morgan was positive for Mosaic Turner Syndrome, I felt scared and unsure. I immediately googled TS and wasn’t reassured. At the time, all we could do was be patient and pray, because she needed further medical testing to rule out additional medical issues. She was immediately referred for further testing that included kidney, heart and ear nose and throat specialists. We went to every appointment, and because of God’s grace, all of her tests came back with no issues (heart, kidney, ENT). For now we only have to manage her hypothyroidism with daily medication and her short staure is managed with human growth horomone shots nightly. Morgan’s Turner Syndrome traits so far are short stature, low set ears, wide chest, arms that protrude at the elbows, hypothyroidism, vision problems, speech and developmental delays. It sounds like a lot, but it really isn’t! Morgan’s TS issues are considered mild. Unfortunately, 98% of babies conceived with TS do not make it to term. Our Morgan is part of the very special 2% and for that, I thank God everyday for my butterfly.

Morgan’s awesome pediatrician Katie Poole noticed something wasn’t right with her slowed growth between well-baby appointments and immediately tested and diagnosed her. Because of her competence, we were able to start as early as possible on medications to ensure the best health for our baby girl.

Mosaic Turner's Syndrome
Morgan, 18 months old

Before she was diagnosed, I didn’t know anything about this chromosomal disorder that only affects 1 out of every 2500 girls/women. I did notice that morgan was a bit shorter, but so is her sister, and her dad and I aren’t the tallest people, so I didnt’ think much of it. Many people have the same thinking. As parents, It’s important to track your baby’s growth, girls and boys alike. It’s as simple as taking them to their regularly scheduled doctor’s appointments.

By becoming an advocate for Morgan, I am sure to take the time to help educate my friends, family, and everyone I can, about Turner Syndrome, and to push for proper well baby visits and testing.The earlier you find out, the sooner you can help your baby girl live a happy and healthy life. Please feel free to ask me questions, comment or email Morgan and I! We are also open to connecting with parents of TS girls in the DMV area.

For more information and to make a donation to the Turner Syndrome Organization, you can go to http://www.turnersyndrome.org/.

Happily,

Shavonne Marie

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