Malones discover joys of living with Apert Syndrome
VIDALIA — One day, Heather Malone realized life was normal.
She had only one response. She broke down.
The previous 15 months had been ones of intense structure. She and her husband Matt had been on a strict schedule of surgeries, therapies and benchmarks they needed to meet for their daughter, Ellis, who was born with the rare condition of Apert Syndrome.
They had come through the structure, and for the first time since Ellis was born, things were just normal.
“I was so used to having a plan, and I realized we were at a point where we didn’t have one,” Heather said. “I didn’t know how to respond at first. I broke down and said, ‘We are finished.’ I don’t know what to do.”
What they did was embrace the normal, and now, despite the extraordinary circumstances of the first couple of years of Ellis’ life, things are as normal as they can be.
Rather than sleeping on the couch while they listen to the oxygen monitor beeping from Ellis’ crib in the living room, Heather and Matt sleep in their own room. Instead of drawing nutrition through a feeding tube, Ellis eats like the rest of the family and fights with her older brother Caid over who gets the last Vienna sausage.
She walks, talks and wags her fingers — all 10 of them — like the rest of them. Her fingers don’t bend in the middle, but give her a crayon and paper, and she’ll go to town.
She has physical, occupational and early childhood therapy every day of the week — some in Natchez, some at home — but spends her mornings with a sitter and two afternoons a week goes to day care. She’ll enter a Head Start program next year.
“Ellis has really been the best case scenario for a child with Apert Syndrome,” Heather said. “She has really pulled through everything the best she could, and the only complication we’ve run into is that she needed glasses, which wasn’t actually Apert related.”
Apert Syndrome is a congenital disorder that causes malformations of the skull, face, hands and feet. When Ellis was born, her fingers and toes were joined and she had craniofacial shapings typical of babies with Apert Syndrome.
Those with the syndrome have a normal life expectancy and a good chance of leading a normal life, but the treatment is 10 to 20 surgeries during the formative years. Ellis has been through the first round of surgeries — at 9 months, a year and at 15 months.
Two of the surgeries separated her fingers, while another opened her skull and reconfigured it to allow room for her brain to grow. One of the most serious conditions related to Apert is that the skull can close earlier than normal.
“The plastic surgeon who did that surgery, he is so aware of things that you don’t even think of, and he put her hair in pigtails and cut her head in a sort of zig-zag so they didn’t have to shave her head,” Matt said. “When her hair’s down, you can’t even tell it was done.”
Ellis will likely need another surgery at age 5 to resolve respiratory issues related to her skull malformations, but the surgery the Malones call “the big one” will likely come at age 6 or 7. At that time, the surgeon will separate the bones in her face, and she’ll have to wear a halo around her face that her parents will have to tighten by turning screws every day for six to eight weeks. The process will open the bones in her face gently, allowing easier breathing.
Through all of the surgeries, Caid, now 4, handled everything like a big brother looking out for his sister, Heather said.
“Because of this, he likes to play doctors and hospitals, and when he was little he would ask questions like, ‘When I was a baby, did I have to get my fingers separated?’” she said. “He never noticed the difference.”
For her part, Ellis thinks Caid hung the moon, Matt said.
When Ellis was born, the Malones had never heard of Apert Syndrome, and neither had Heather’s obstetrician. The pediatrician had heard about it in medical school but had never seen it.
And while some parents may be tempted to protect a child facing similar circumstances from the world, that was never Heather and Matt’s intention. In some ways, they’ve become spokespeople for Apert Syndrome.
“Because it’s rare, just about every Apert parent is a spokesperson,” Heather said. “We realize that people want to know about it because it is interesting. We know that a lot of those people who are staring are not doing so to be mean, but because they are curious.”
Ellis’ name has been in the public since she was born, and the Ellis Malone Foundation — a non-profit organization founded to help offset her medical costs — has kept it there with fundraising events such as a 5K and traffic block.
Since it was started, the foundation has helped the Malones pay $70,000 in out-of-pocket surgical expenses, costs they couldn’t have met even though Heather and Matt both have insurance through their jobs and costs that would have prohibited the surgeries.
Because of how her cause has been championed, Ellis is in some ways a small celebrity.
“It really got to the point where if I wanted to make a quick run in to Walmart, I couldn’t take Ellis with me because so many people would stop me and ask if it was her,” Heather said.
That’s been Matt’s experience as well.
“We have had so many people walk up and say she was on their prayer list,” he said.
Heather said she’s made a point of posting plenty of pictures of Ellis on Facebook, including up close shots of her fingers and toes, so people won’t feel like they have to stare when they meet her for the first time.
“I can’t tell you how many times I have had people walk up and say, ‘I don’t know y’all, but I follow Ellis on Facebook,” she said.
The Malones have also made a point of taking her to local schools and telling children about her.
“We feel like it is going to help her as she has to explain in her life, when people stare, because we know in some ways she is going to have a hard time growing up,” Heather said.
“But we’ve found kids these days are a lot more accepting than when we were in school, and that’s partly because they try to include all students in the classroom as much as possible.”
Through all of it, the surgeries, fun runs and conversations with curious strangers, the family has learned how to appreciate more of the everyday milestones, Heather said, first steps, sibling squabbles and toddlers who eat like horses.
The normal can be miraculous.