By Scarlett’s Family
Our daughter Scarlett is 3 years old.
We found out at our 30-week anatomy scan that she had a limb difference. Scarlett has three cute little fingers and a heart-shaped chin. We had planned to have her by c-section, and the date was scheduled; Scarlett came naturally one week before we could be induced. 36 weeks was still early especially for a 3 lb 12.6 oz baby. She spent close to 3 months in the NICU.
Fast forward to now, and she’s 22 lbs and growing like a weed.
She struggles with severe GERD, but she is down to taking two medications instead of five. Scarlett has a GJ tube because she cannot handle any food in her stomach. She still gets to taste things, but with an oral aversion, she can’t maintain weight on her own.
Scarlett is tiny but mighty, always smiling and laughing, and loves music!
Scarlett takes after her big sister Mya and is a Swiftie! She has five siblings, and they all look after and protect her. Scarlett’s best friend Bella also has CdLS, and they love to FaceTime. Scarlett loves her pet bunny, Casper, and our dachshund, Frank.
We are so grateful for her. We advocate for her on Facebook under “Scarlett’s Journey.”
My advice to other parents is: doctors aren’t always right, do not let them tell you your child’s outcome. Do not compare your child to another. Our CdLS kiddos are all unique and pave their own way.
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