Shelby Terry was born at home on October 29th, 2017. My husband and I had already had five children, and weren’t afraid in the slightest to add another to our family. We knew the rhythm of it, we understood the challenges, and we were ready. We were expecting this to be just like all the rest, but what came next was something we never could have prepared for.
Moments after Shelby was born, she was having difficulty breathing. It was all such a rush that I hadn’t even noticed some abnormalities with her face. As my husband and I began to panic, our midwife called the ambulance.
Lights. Sirens. Doctors. Scans. Questions. But most of all, waiting.
Treacher Collins Syndrome is a condition that stems from specific genetic mutations, affecting 1 in 50,000 people. It impairs bone development and facial tissues, and in severe cases it restricts the airway of those affected. Due to malformed eyes, ears, cheeks, and jaws, affected individuals often have a cleft palate, can develop vision problems, and in many cases have hearing loss. Micrognathia, gene TCOF1, mandibulofacial dysostosis, dysplasia, all of it meant nothing to me before Shelby was born. But now, we had no choice but to know every detail on the syndrome that affects our daughter.
Over the next five weeks, we had to live with our hearts in two places. We split our time between our other children at home, and Shelby in the NICU. During those long weeks, Shelby had a tracheostomy and a feeding tube placed. There was a constant barrage of doctors and therapy—we were forced to rapidly learn all the new ways we would need to care for her special needs. While at times it was stressful, scary, and new, we had faith that God had prepared us for this and that we would come out stronger than ever.
Now all of her daily care is normal to us, but the impact she makes on our hearts is ever-growing. Even with a plethora of procedures and surgeries ahead of her, Shelby is a sweet, yet feisty girl who knows what she wants and fights for it. Through her, our faith in God has grown, our love for community has blossomed, and we've been stretched and challenged in unimaginable ways. God had taken us down a river of trials, but where we landed was better than what we ever could have hoped for. Without our little Shelby, there’s no way we would have the depth of faith and love that we have today.
She completes our family.
She is our world.
Shelby is most definitely a wonder to behold.
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