Molly’s Kids: Theodore Mello
CABARRUS COUNTY, N.C. (WBTV) - Over the weekend, a Cabarrus County mother wrote a lengthy and powerful email. “I’m not exactly sure where to start,” she said. “So, I will just start at the beginning.”
From there, this Concord woman told a tale about her son, Theo Mello. Theo is the newest one of our amazing #MollysKids. Hope you guys help welcome him—and his family—with love.
Samantha and her husband, Max, have been married eight years and have two children: 5-year-old Theo, and 3-year-old Lilly.
“While Lilly is a typical child, our son Theo is the fourth person in the world with a specific genetic mutation,” Samantha wrote. “His mutation is in the POLR1A gene and is called Acrofacial Dysostosis, Cincinnati Type. It’s considered a spontaneous mutation. Meaning, we aren’t carriers, it’s simply the way his genetics came together.”
Samantha said a geneticist in Cincinnati is doing lots of research using CRISPR Technology but overall, there is still very little known about the complicated disease her son lives with.
“Theo was born with two holes in his heart (which have now thankfully closed), an enlarged kidney, mild cleft lip, extremely high arched palette, hypotonia, epilepsy, and general delayed development,” Samantha wrote. “He is also nonverbal, uses a feeding tube for meals and medications, and requires one-to-one care at all times. He still communicates with us and his home nurses by smiling when he’s happy, whining when he’s sad, and recently he started using an eye tracking computer to learn to communicate even more. So far, his favorite thing to ask for, is to go swing at our neighborhood park.”
Samantha says a typical day for her son is a general challenge. He has a virtual school he loves, some physical therapy, speech therapy, and at least one good long walk outside if the weather is nice. He used to have 5-10 seizures a day, but unfortunately, is now up to more than 40 a day. Those seizures make him tired, so he sleeps a lot. Samantha, Max, and his home nurses help keep him happy and healthy, while pushing him to keep trying harder.
A recent hospitalization found Theo’s white blood cell count to be high, so Samantha says they’re now currently trying to find the source of the infection.
“It’s always something,” she said. “But we’ll get through. We always do.”
Reading Samantha’s email, you are struck with her raw honesty.
“I’m often amazed at how strong Theo is,” she says. “How despite it all, he smiles when I kiss those sweet cheeks and when he sees his daddy come in the room. He may be silent but that smile speaks volumes and melts my heart every time.”
Last year—in March of 2020 as COVID hit the world—Theo was granted a wish from Make-a-Wish. His parents said he loved the outdoors so MAW granted him a camper. They say it gives him an opportunity to see the world as bigger than his diagnosis, and gives their entire family memories and time together. It meant so much, they ended up making a video about the impact of this gift on their son. You can watch that video, here >> https://vimeo.com/481438399/cbd1b2d738?fbclid=IwAR3SXPrjCeti3-9qYcreg2Ry4TBZ_ir7VgHmjLE_ZqqGlpZ-vF7c4GGa7Ko
Then Samantha said the reason she was really writing.
“I have an idea,” she said. “It goes back to the day Theo was born. At the time, we had no idea he’d have special needs. He came into this world, eyes wide open, but something seemed off. Everyone suspected something was different, but no one really helped us make sense of any of it. We feel like we fell through the cracks of the system. The safeguard for new parents is usually their pediatrician. You go home from the hospital with a follow up appointment with a pediatrician. Which we did. But what happens when the pediatrician fails you? Maybe your pediatrician isn’t experienced with special needs, or assumes your gut concerns are “new parent jitters.” So what happens when that’s not it?”
Samantha said after feeling something was wrong time and time again, she and Max took Theo to the ER at 5-months old, against the pediatrician’s advice. At that time she said the ER doctor looked her squarely in the face and said, “How have you made it this long without coming here? He should have never left the hospital to begin with.”
Simply put, Samantha says, Theo wasn’t just another fussy baby, he was drowning on his formula. His extremely arched palette and low tone made it impossible for him to swallow properly and his lungs were full of milk.
“It’s a long story that maybe we’ll talk about one day more in-depth,” she said. “But in the end, we were failed by the system set in place for new families. For us it’s glaringly obvious there’s a gap in the system, especially for families with special needs. We feel like Theo is a prime example as to why there should be a coordinator who comes by before you leave a hospital to connect you with services you need. It is so hard in those first few days. You don’t know what you need and don’t really know what services are out there, especially as a new parent. Some of these services could be critical for special needs families, such as speech or feeding therapy. In my vision, a coordinator would connect families with specific services and help make that transition less traumatic.”
Samantha says she sees it a bit like what hospitals already do for lactation consulting services with offering classes, products, and support.
“The day we left the hospital with Theo, I’ve never felt more alone in my life,” she said. “Our family was deeply traumatized during that period until we finally found ourselves in the ER five months later. We have since learned how to advocate for our child. We feel very connected now to an amazing healthcare team that loves our son. But, it shouldn’t have taken so long. There is an opportunity for birthing hospitals to provide a special service that can bridge the gap for families who need specialized services.”
Perhaps, she added, some services are offered in some places, but Theo is living proof some families have to learn to navigate severe problems on their own.
“Hindsight is always 20/20,” she said. “Looking back, I can see where we as a family were failed. But maybe we can turn our experience into something good for other families. Our future is unknown since there’s so little information about Theo’s disease, but we know our family will face it together, out of love. We love Theo so much. Our most important goal is to give him the very best chance at the very best life we can.”
Samantha: I’m posting much of your email you sent here exactly as you wrote it. Let’s see where your words and idea goes. You never know.
No matter what, we are happy to welcome Theo to #MollysKids.
More pictures below in comments.
Including one of Theo smiling up at his daddy, that might as well be a billboard for how love looks.
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