Kaia, Trisomy 21, Duodenal Atresia, and Heart Defect

Kaia, our miracle girl, arrived on July 3rd and after a five-week stay in the NICU at Crouse, she is finally home where she belongs. On just her 4th day on Earth, she underwent surgery for duodenal atresia — a blockage in her small intestine that prevented nutrients from passing through. She spent her first weeks on a breathing tube, under bilirubin lights, supported by CPAP, and with a Replogle tube — but she fought through it all with strength beyond words.

Two weeks into life, she was already learning how to feed and mastering breastfeeding. We found out about her Trisomy 21 (Down syndrome) diagnosis at 16 weeks pregnant, and to say we are part of “The Lucky Few” is an understatement. We made it our mission to prepare, educate ourselves, and gather every resource possible to make her arrival as smooth as it could be.

“Down syndrome is the least interesting thing about me.” And that couldn’t be more true. It doesn’t even cross our minds.

She is strong, expressive, determined, and full of light. She loves being close, soaking in cuddles, and showing us daily what resilience looks like.

Children’s Miracle Network has helped ease the financial strain of Kia’s NICU stay by reimbursing mileage, food, and ongoing medical needs. As she continues seeing multiple specialists — and with open heart surgery anticipated by age four — this support allows us to focus on what matters most: her growth, her joy, and her future.

She is our miracle. And she is just getting started.

–Kaia’s Family