Alyciana's Story

What condition was your child born with?:

Extreme Prematurity & Hydrocephalus

What were some of the biggest challenges that come with this diagnosis?: Severe developmental delays, not eating by mouth, & 4 brain surgeries within 6 months. Watching her struggle and be in pain when her shunt is failing is awful. She regresses so much each time it happens.

How has this diagnosis impacted you and your child's day-to-day life? Everything takes longer than it should. We kind of just expect it now. Our life revolves around therapies and appointments — but I am so grateful to have these services available to us.

What do you wish others would know about your child's medical condition?: Hydrocephalus in infants comes in 2 forms — babies can develop Hydrocephalus while in the womb & babies can have Hydrocephalus resulting from a traumatic birth/hemorrhage of the brain. Aly was born at 23 weeks, she did not have Hydrocephalus before she was born — in fact, she was not diagnosed until her routine head ultrasound at 40 weeks gestation. She was only 1lb 4oz at birth and spent 5 months in the NICU.

In what ways has your child inspired you or others?: She smiles, from the moment she wakes up the the moment she falls asleep. She’s the happiest girl in the world despite all of her struggles.
Tell me a little about your child (Personality traits, favorite toys, funny stories, etc.): She is so happy! She loves her big brother, and her loveys. She’s a surviving twin to her identical sister who lived for 24 days and is now in the stars.