Scott and Melissa Clark were on vacation on August 17, 2018 when they got the call. They had been chosen out of five final families to adopt a 2-year-old boy in Piedmont, Alabama named Eli. Though the Clarks had Facetimed with little Eli multiple times, they didn’t meet him and his foster family in person until just hours after hearing the great news. Nonetheless, they were confident he was the child for them and ready to help him overcome the challenges they knew about – and some they had yet to learn.
Now 5 years old, Eli was born with cerebral palsy, hydrocephalus, traumatic brain injury and kidney disease. Seizures have begun more recently and within the last few months he was diagnosed with dysautonomia, a condition that can impact involuntary but essential body functions such as heartbeat, breathing and digestion.
Eli also has a contagious laugh and a personality that will light up the room.
“Overall, he’s just a happy child. If you’re having a bad day, he will make you feel better,” said Melissa. “When we look at what he goes through on a daily basis, we realize we can make it through what we go through. He struggles to breathe, see, live – everything is a struggle. He does it with a smile on his face and a tube in his tummy (he is dependent on a GJ tube for nutrition).”
When the Clarks were getting ready to welcome Eli into their lives, they not only had to prepare their home, but they had to arrange for all his medical needs. His specialists in Alabama referred them to CHoR and a family friend recommended Dr. Tiffany Kimbrough for his pediatrician. They’re grateful she did!
“Children with complex medical conditions require coordination of care between multiple specialists, therapists, school systems and more to meet their individual goals of care and fullest potential. As a general pediatrician, I love caring for these kiddos and their families,” said Dr. Kimbrough. “Eli is so special to me, and I am honored to be a member of his care team.”
Eli’s team includes 15 specialists too – Dr. Schmidt in pulmonology, Dr. Bunchman in nephrology, Dr. Tye in neurosurgery, Debra Hearington in neurology, Dr. Vadlamudi in gastroenterology, Nancy Thompson for his GJ tube, Dr. Nelson in urology and the list goes on. Having them all in one place has been a game changer for the Clarks.
“We just brought in urology after Eli’s recent hip surgery. Dr. Nelson reaches out to infection prevention and to Dr. Bunchman to make sure the medication he’s prescribing isn’t going to impact Eli’s kidneys,” said Melissa. “We love how everyone works together. It’s all about Eli and Dr. Kimbrough does an amazing job of coordinating it all.”
It also helps that many of Eli’s providers have known him since his earliest days with the Clarks, including Debra Hearington who sees him every three months, with more frequent visits as needed.
“I have been working with Eli since he was 2 years old, and before he was diagnosed with epilepsy. Initially, my role was to follow his development, but after he started having seizures, I was not only monitoring development, but also managing his epilepsy,” said Debra. “Because so many things can affect his epilepsy, I have to consider how he’s doing with his underlying conditions in determining the best management. Of course, his parents play a key role in that, as well, as partners in his health care. I love seeing EIi. He has come a long way.”
Eli and his parents are also supported by Jan Kirby, one of our pediatric patient advocates, who helps them coordinate all their care and makes sure their needs are met.
“Eli has written his own book of rules which he still doesn’t always follow. Scott and Melissa are so easy going and flexible, always focused on meeting his needs,” said Jan. “In my role I try to meet them at whatever the current need is. Families with medically complex children spend so much time in the medical setting that one of my passions is trying to coordinate care and fit health care into their schedule and lifestyle. Eli keeps them busy and I try to facilitate CHoR as a partner to work alongside them, with the ability to support and flex as needed.”
Eli has also been to our emergency department several times for urgent concerns. On a recent visit for a particularly bad seizure, Scott and Melissa were comforted by Dr. Pat McLaughlin’s calm reassurance that Eli was in good hands.
“I’m a paramedic so I knew Dr. McLaughlin even before we got Eli, but things are different when it comes to your child,” said Scott. “I appreciate that Dr. McLaughlin also took the time to get to know Eli. He didn’t order a bunch of unnecessary tests. He did exactly what he needed to do and got us back home.”
Some words Dr. McLaughlin said that day have stuck with Melissa too. “I want you to know that every child that comes through the door is important to me – whether they have a trauma or a broken toe.”
COVID brought some new challenges for the Clarks. As the family’s sole financial provider now that Melissa cares for Eli full-time, Scott didn’t have the option to stay home and away from others – but he simply couldn’t put his son’s life at risk by inadvertently bringing the virus home either. For seven months, Scott lived in an RV outside the house. He and Melissa would meet on the deck to exchange dirty laundry for clean clothes, and so Melissa could hand him a warm dinner.
Despite tough times, the Clarks are sure to count their blessings.
“We still have each other, and we have this beautiful child. We learn so much from him every day. We learn as a couple how to work together and we’ve come closer,” agreed Melissa and Scott.
What makes them most proud of their son?
“Everything. He’s such a hard worker and he has amazing patience. He can’t communicate what he wants clearly so he may not get it immediately, but he’s so patient with us. He’s such a smart little boy,” said Melissa.
Though communicating is a challenge, Eli has been making great strides, including with his therapists at our Brook Road Campus. He has started looking up and smiling to say yes, or looking down and frowning for no. If Melissa and Scott express goals they have for Eli – no matter how ambitious – the therapists are willing to work toward them. They’re even aiming to get Eli into an electric wheelchair early next year as he continues learning how to use the switches that will be needed to drive it.
Eli’s favorite thing in the world is music. When he’s not seeing his friends at CHoR, he loves listening to music and – on the occasions he’s able to go outside – swinging on his magic carpet swing. He’s also been spending a lot of time with his new best bud – his service dog in training, Koda. Named after the music term “coda,” the yellow lab is working to become a seizure alert dog and the newest member of Eli’s triumphant team.
Until Koda is up and running, the Clarks and their CHoR partners make a great team in their own right.
“There’s something unique about CHoR – and I’ve visited a lot of hospitals. They’re so compassionate, so focused,” added Scott. “When it comes to Eli, this is the only place I’ll go.”
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