From the very beginning, Elliot has been on his own timeline, and he decided to come into this world 2 months early. We had a normal pregnancy with him, so it was a complete shock when the nurse in the delivery room told us that he had some physical abnormalities. He was diagnosed with CHARGE syndrome early on in our 3.5 month NICU stay. Like many of our CHARGE cuties, he had multiple surgeries and came home with a tracheostomy and g-tube button. We were terrified the first few months trying to understand what life would look like with Elliot. We were told that he was profoundly deaf, may have vision impairment, couldn’t smell, had minimal taste, and will have sensory issues. Getting these “facts” about our son while learning to be new moms was very overwhelming. Then, over the next several months, we got to learn the real facts about Elliot. He is strong, resilient, hilarious, curious, and stubborn as can be! After his first birthday, he got a cochlear implant and changed to a GJ tube to relieve his constant vomiting. These changes have made a world of a difference for him. He has really blossomed over the past few months and can charm everyone in the room by flashing his dimples and making the sweetest dinosaur noises (CONSTANTLY) while wearing his PMV/speaking valve. CHARGE Syndrome has definitely brought us challenges. He has been through more surgeries than everyone in his immediate family combined and hospitalized a handful of times with some truly scary moments. We hate watching him go through these moments and knowing that he will have more of them. We wish we could take away any of the pain he experiences in a heartbeat. Despite all of his medical trauma in his little life, Elliot is the happiest boy! His strength is above all else! We are now working hard in all of his therapies seeing small strides each week. We recently interviewed at a “reverse inclusivity” daycare/pre-K school that we know will be a great fit for him next year! Elliot is the absolute joy of our lives, and we cannot wait to see what the future holds for him.
What would you like to tell other people about CHARGE syndrome?
CHARGE syndrome creates the most complicated combination of sensory issues of any condition. But they have an amazing ability to compensate and overcome. People with CHARGE syndrome are so much more than their list of diagnoses. They are the embodiment of strength and joy and so much love! -Diane & Melanie, Elliot’s Moms
