WAYNE COUNTY, Ohio — A Northeast Ohio mom is providing hope, support and education to other parents and caregivers of children with medical complexities.
Emily Whiting is a doting, patient and playful mom to three little ones, pushing them on the swings, coloring on the sidewalk with chalk and providing snacks on a hot summer day, but five years ago, Whiting didn’t know if the reality of carefree playing with her oldest child would be achievable.
In July of 2017, Whiting and her husband were preparing for their first child. They went to the 20-week ultrasound excited to find out the sex of their child.
“We left learning we were having a little girl and not knowing what the future held, whether she would live and what life would like,” she recalls.
The scan revealed that their child, Charlotte, had anomalies from head to toe: the brain, heart, liver, abdomen, kidneys and a cleft lip or palate.
“I was sitting in this same backyard, and the world was around me; I was hearing t-balls and kids giggling and just thinking, the world keeps going, but ours has stopped,” she recalled.
Charlotte spent three months in the NICU and received her first surgery at just five days old.
“It was day-by-day, determining what surgery she needed, if she would make it. A couple of weeks into it, we were able to kind of evolve that question of ‘will she live’ to be able to ask, 'what will life look like?'” Whiting said.
For the next five years, life revolved around trips to various specialists, appointments and more surgeries. Charlotte is preparing for her 17th surgery at just age 5.
“I don’t think the doctors knew what odds to give her. Every time I would push for a prognosis and a ’how is this going to turn out?’ I would get the answer, ‘we will see, we don’t know,’” she said.
Whiting began to share the frustration and fear of their journey, of navigating how to be a parent and advocate for a medically-complex child.
She started to meet with other parents who were also navigating a similar reality, including Ashlyn Thompson.
“We connected over this shared bond of the trauma of it all, and seeing all the care gaps that were out there for these children and for these families, and we were so inspired of what we had provided each other, and we wanted to provide that for other people,” said Whiting.
The two founded Charlotte’s Hope Foundation Inc.
“It’s one thing to have people feel for you; it’s a whole other thing to have people feel with you,” she said.
The goal of the nonprofit organization is to support, encourage and educate parents and caregivers with medically complex children, teaching them how to be the best advocate for their child.
Thompson and Whiting also have a podcast, Empowered by Hope, dedicated to the same topic.
Whiting wrote the book "She is Charlotte," which walks through receiving the news of Charlotte’s anomalies while she was still in utero and the months following the scan.
Just a few months ago, the Whitings received something they had always hoped for — a diagnosis for Charlotte. She has MED12 Hardikar Syndrome, a rare condition that comes with cleft lip and palate, bile duct abnormalities, liver disease, kidney irregularities, narrowing of the aorta and more.
“Ironically, there are about nine reported cases in the world,” said Whiting.
While Charlotte still has a long road ahead of her, Whiting is confident through Charlotte’s Hope Foundation that they will raise awareness for MED12 Hardikar Syndrome and other rare medical conditions.
“We are in it. We are living it. We are knee-deep,” she said. “And while we are dealing with our own challenges, we are eager to make positive impact for the future kids coming behind us.”
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