Erica M. is a mentor for parents caring for a child with CHARGE syndrome or a medically complex child who must navigate a number of specialties. She has experience working with specialists in the area of pulmonology, ENT, gastroenterology, audiology, and a number of therapies, including speech, feeding, occupational, and physical.
Gavin was born at St. Luke’s in June 2020. After a routine healthy pregnancy, I realized within a couple days of his birth that he was having difficulty eating. We were transferred to the NICU and, although we didn’t know it at the time, started a journey as a family (along with my husband Brian and daughter Ila) that we never expected to be on. We were ultimately transferred out of state to a NICU at a larger facility where Gavin was diagnosed as having CHARGE Syndrome. This is a very rare genetic condition that can impact hearing, sight, the heart, the airway, the swallow, growth—and basically every system within the body. It impacts each child differently and no two children with CHARGE are alike. This created a lot of uncertainty, but we have learned to roll with it the best we can. When the pediatric ophthalmologist told us that his vision looked fine, we cried with joy. When we learned that he had complete hearing loss in his left ear but normal hearing in his right ear, we felt lucky and prayed it would stay.
Today, Gavin is G-tube fed and developmentally thriving at his own pace. He is the sweetest little boy, smiles all the time, is playful and mischievous, and loves his sister more than anyone in the whole world. While our family’s journey is unique, Gavin has changed how I see the world in the best way. I celebrate each day that our family is healthy, feel grateful for everything I have, and try to help others in any way I can after experiencing this challenge.
I look forward to connecting with other parents of medically complex children. We are still very new in our journey but I am happy to share what I have learned, listen if you need an ear, and offer support.
Caring for a child with complex medical needs can be complicated and overwhelming. Support from someone navigating similar challenges can make all the difference.