Phoenix Roanne was born on October 6, 2012. We quickly discovered that something wasn’t completely right. Even though her head was misshapen and her fingers and toes were fused she did not end up in the NICU. She amazed and confused the doctors by breathing and eating on her own. When she was one month old she was diagnosed with Apert Syndrome.
Apert Syndrome is a craniofacial condition characterized by premature fusion of the skull affecting the shape and growth of the head and face. Additionally, the fingers and toes are fused together. It is a spontaneous genetic mutation that occurred at conception (Mommy and Daddy did nothing to cause this). Apert Syndrome is extremely rare and occurs in only 1 in 160,000 – 200,000 births each years in the US.
At this point Phoenix is doing amazing. However, it is unknown how this syndrome will affect her both mentally and physically. She will be having multiple surgeries to correct the shape of her head, hands and feet in the very near future.
Phoenix is very a happy and content baby. She loves snuggles, baths, hugs and kisses. Every day she is teaching is to be strong and brave. A baby could not be more loved than her.
Luke and I are determined to spread awareness of this syndrome and give Phoenix the best life we can possibly give her. We are learning to become advocates and teachers right along with parenthood, but we would not ask for it any other way.
If you would like more information on Apert Syndrome here are some really helpful resources:
Faces: The National Craniofacial Association
Children’s Craniofacial Association
On May 21st 2014 Phoenix passed away in her sleep. One day she has bright, happy and full of joy. The next she was gone. After several long weeks Luke and I finally got some answers to how she passed. We believe that Phoenix had a seizure or another type of neurological misfire. She then threw up and aspirated. The official cause of death is asphyxiation. She never woke up from her sleep. Luke and I miss Phoenix very much and can’t wait till the day we see her again.