Adilynn Shook hasn’t even reached seven months of life yet, but the small child with multiple wires wrapped around her body has gone through far more medical procedures than many adults will experience in their entire lives. But despite all the tests, surgeries, checkups and symptoms which will continue to arise throughout her life, the perpetually sick child rarely loses her energy and a sweet smile that lightens the soul.
The circumstances behind Addie’s current situation began prior to receiving either her first, the nickname “Addie,” or even her last name. Addie is an adoptee, taken in by Tempe couple Collin and Laurie Shook after it was discovered they were incapable of conceiving a child of their own. They started their little family by taking in a now 2-year-old boy with special needs, and ended up adopting Addie due to a connection Laurie had with her adopted daughter’s biological grandmother.
“We wanted a little girl really bad, and it just turned out we got one,” Collin said.
Addie’s health problems emerged within her first month when several holes were discovered in her heart. The hope was for those to go away quickly, but other issues such as a case of double pneumonia and one moment when she started turning purple emerged. It was from then on she became a frequent visitor to Banner Children's at Cardon Children’s Medical Center in Mesa.
The diagnosis was CHARGE Syndrome; a conglomeration of several maladies that affect people all over the body. “CHARGE” is an acronym for the various disorders, according to chargesyndrome.org: “C” is for coloboma, or an eye disorder that looks like a keyhole in Addie’s right eye; “H” is for heart defects; “A” is for atresia of the choanae, or blockage in the back of the nasal passage; “R” is for retardation of growth or development; “G” is genital or urinary abnormalities, and “E” stands for ear abnormalities or deafness.
It all adds up to the proverbial domino effect, with one issue contributing to another to create a conglomeration of problems. In Addie’s case, one of the major issues she faces is an inability to keep her inherent reflux function from keeping food from regurgitating back out through the esophagus. That could cause her to choke on food, medication and even saliva, and requires the placement of a feeding tube directly into her stomach.
CHARGE is pretty rare, affecting 1 out of every 8,500 to 10,000 people — rare enough for Pediatric Pulmonologist Dr. Kelvin Panesar to say he’s only seen somewhere between 15 and 18 cases of it in his 20-year career.
Some of the rarity is due to symptoms which can be obvious like Addie’s, or minor enough that people don’t know they have CHARGE in the first place. Regardless of the severity of the symptoms, CHARGE Syndrome isn’t something that simply goes away.
“Children who are born with this will have this for the rest of their lives; it never goes away,” said pediatric surgeon Dr. Jonathan Greenfeld.
Due to the complexity of the CHARGE Syndrome and its various disorders, the doctors at Cardon Children's treat Addie in a way akin to the “it takes a village” form of parenting. As of Dec. 11, a total of 15 specialists care for Addie and her various CHARGE symptoms.
“We meet about her, sometimes formally, sometimes informally to address what are the issues with Ms. Addie,” Panesar said.
The situation creates a need for many, many doctor appointments, which led Laurie to leave a position she had for five years in order to stay home and take care of her daughter. It’s not an easy situation for the family, especially given the financial ramifications of having a child with so many maladies that require constant care and supervision. Even beyond the doctor visits, Addie receives constant care through monitoring systems for her heart and oxygen levels, the aforementioned food pump connected to her stomach, and a suction to remove saliva. All of the wires and tubes have led the Shooks to call their daughter their robotic baby.
But, as Laurie put it, a parent does what he or she has to do to take care of the little ones, and the sacrifices they’ve made are rewarded by Addie’s inherent exuberance and brightness of being. She’s the ultimate trooper, the kind of kid who can be tuckered out from a long day of constant doting and attention and still maintain a heart-melting smile.
“It’s worth every hard moment, and every tear we’ve cried has been paid back with 5,000 great moments,” she said.
On this day, she was entertaining, and one of the few children who can sport a “Santa (hearts) me” shirt without a roll of the eyes. Addie appears as a happy kid, a girl who Laurie said dotes on her older brother and keeps an unspoken optimism in the face of tests and surgeries.
Laurie said the Shook family is lucky and thankful for everything they have with Addie and their son, but the aforementioned nature of CHARGE Syndrome means the little fighter will have to keep battling. More trips to Cardon Children's are on the docket to test for any potential spinal issues, fix a hole in Addie’s cranium and a possible heart procedure to fix the holes in her heart once Addie turns 3 years old.
The latter, though, could be negated if the holes close on their own. It’s not likely, but Addie’s folks share a similar sense of optimism as their daughter does.
“We think miracles can happen, so we’re going to pray it happens on its own,” Laurie said.
None of this was in the Shook’s plans when they started the search to find their family. Collin joked the couple had its eyes set on two blond-haired children before the first foster-parent class, a slightly different set of circumstances than the two children with different sets of special needs they have now.
Nothing is easy in this situation. The Shooks said they’re lucky they have a child like Addie, capable of teaching them to be thankful every day.
“Within the last year, it’s been turned upside down and inside out and backward,” Collin said. “We wouldn’t change a thing.”
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