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She Has Defied All Odds - by Shelby Collins

My name is Shelby Collins, and my daughter Juliauna, has Turner syndrome (TS). We live in Corinth, Kentucky. She was diagnosed with TS two months after birth. She will be two in March, and boy has it been a wild ride since she was born!

Juliauna always measured small in utero and is still tiny. She is 22 lbs. and is 27 inches tall. She wears 12–18-month clothing. Some of her favorite things are Mickey and Minnie mouse, Moana, Cars ,and CoComelon.

There was never anything mentioned about TS during my pregnancy. I was, however, hospitalized in December of 2020 for a week due to my bile acids being 10 times what they should have been, and I was diagnosed with cholestasis. During that time, I had multiple doctors tell me that my child might not make it, or that I would deliver really early due to my condition. My pregnancy was considered high risk and I needed to be followed by OB/GYN closely with weekly and sometimes almost daily appointments, non-stress tests (NST), and ultrasounds.

My OB/GYN was going to induce me at 37 weeks if Juliauna had not already come on her own. She decided to come at 36 weeks - four weeks early. She was delivered by emergency C-section. She was 4lbs 4oz and was transferred to the NICU for three weeks.

While in the NICU, we found out she had a heart condition known as Atrial Septal Defect (ASD), a double ureter on both sides of her kidneys, a low lying spinal cord which causes a dimple in her back, cupped ears, lymphedema in her hands and feet, and she is missing the top part of her pinky on her left hand.

She is truly a miracle! Juliauna is doing great! We did have to have physical therapy to help get her to walk because she did not crawl. We also do have some issues with eating, and she has her "comfort foods" that we stick to mainly because that is what she prefers. We also just started regular milk. She was on almond milk, but we have been able to switch due to her accepting regular milk.

We do follow up with a lot of different doctors, you name it, we have probably seen it. She sees all of her doctors at Cincinnati Children’s Hospital, where she is also a part of the Turner syndrome center.

Juliauna may be little but she is mighty and she doesn't let anyone forget it. What I would want a parent to know who has a child with TS is that kids are all different and are going to do different things. They are going to go at their own pace and do what they want when they want. I will say when I had her after having her brother it was a totally different scenario. It can be very frustrating at times and you want to give up, but keep pushing through, and eventually, it will get better.

If you have questions, ask. If you need help, reach out. There is nothing wrong with questions that you as a parent need or want answers to. Make sure to advocate for your child because you know them best. I have had to do it multiple times with Juliauna and doctors that just don't understand. Stand your ground, because at the end of the day, your child has wants and needs that may not be the same as other children. I know, as a parent, I have a long road ahead of us with different obstacles to come, but I wouldn't trade it for the world. I look forward to watching Juliauna grow, learn, and be her own independent self. She truly is our miracle baby, especially with only having had a 2% chance to live and dealing with everything I had to deal with during my pregnancy... she has defied all odds!


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