Our sweet Ashlyn was born on April 10, 2023. During our 20-week ultrasound, we learned she would be born with a bilateral cleft lip and palate. The ultrasound also showed a small hole in her heart, which closed before she was born, and the back of her brain measured small.

While I was pregnant, the maternal-fetal medicine team connected us with the ACPA Approved Team at Novant Health New Hanover Regional Medical Center in Wilmington, NC. They helped us understand what to expect when she was born and what her treatment journey would be like. It was decided that she should go straight to the NICU once she was born, so we made plans to be induced at 39 weeks to ensure we were at the hospital.

Ashlyn underwent three surgeries during her first year of life. When she was 4 months old, she had a rare sacrococcygeal teratoma and her coccyx removed. At 7 months, her lip was repaired, and at one year, her palate was repaired. The first year of Ashlyn’s life was the most challenging: one week in the NICU, numerous doctor’s appointments, physical therapy, occupational therapy, and much more.

Ashlyn has a microduplication of chromosome 3q29 and microdeletion of chromosome 6q27. She is the only reported case in the lab database with both of these deletions and duplications together. She also has microcephaly, difficulty gaining weight, failed numerous hearing tests, hypotonia, ventriculomegaly, and cerebellar dysplasia. We are so thankful for the incredible team of doctors who care for Ashlyn. From her specialists to our pediatrician, everyone is proactive and works collaboratively to coordinate her care.

Now one year old, Ashlyn loves her big sister, Autumn, and will become a big sister herself! She loves playing, smiling, making noises, and kicking her legs in the pool. Ashlyn is the absolute joy in our lives, and we don’t know what we would do without her. 

To parents just beginning their journey, we want to say: take it one day at a time. It will all work out —just focus on giving lots of love.

Kylie & Vaughan

(Ashlyn’s parents)

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