have an opportunity to be with her before her surgery,” said her mother, Tia Dangerfield, 27, who lives near Elkton with her fiance, Matt McCoy, the father of Amaya and her big sister, Aubrey, 7.
Amaya looks and acts like any other girl her age, except she hasn’t learned to speak yet and has balance issues when walking. Her ever-worsening epileptic condition has made her “developmentally delayed,” her mother explained.
Like her big sister, Amaya is a joyful girl. She has expressive dark brown eyes and a bashful yet playful smile. On this particular Saturday, she was partial to a pinkand-white pacifier, and her light brown hair was in a ponytail.
The party atmosphere, including a full food spread and a home full of chatting adults and playing children, belied the serious reason for holding the get-together.
“This operation is the absolute last resort,” McCoy said. “We’ve tried all of the medications on the market. We can’t do anything else. There’s nothing else left to try.”
These days, Amaya’s seizures last 90 seconds to two minutes, and she typically stops breathing for 30 to 40 seconds, Dangerfield said.
“She turns blue. For us, as parents, to see her stop breathing for 30 seconds is agonizing. We wonder will there come a day when she holds her breath too long,” she said.
The parents, who have a “rescue medication” that they can give Amaya, sleep in shifts so Amaya is never left unattended. McCoy, who has a night-shift job at FritoLay in Aberdeen, is with Amaya throughout the day. Dangerfield, who works dayshift as a registered nurse at Nemours/Alfred I. duPont Hospital of Children in Wilmington, Del., is vigilant at night.
“We watch her all the time,” McCoy said, adding that Amaya is more prone to seizures after she wakes up in the morning and after taking naps. Her convulsions sometimes come in “clusters.”
There were no complications when Amaya was born on May 24, 2014. And there were no signs of problems until Amaya was 9 weeks old, when she experienced her first seizure. Her convulsions lasted about 10 seconds then.
That put Amaya under the care of doctors, who, during an 18-month period, put Amaya on six different medications. Every medication provided some relief before losing its effect, each time prompting physicians to try something new.
“She’s been on so many medications. After changing a medication, she would go a couple of days or a week, or maybe two, without having seizures — and then they’d come back,” Dangerfield said. “The longest she has gone without a seizure is about four weeks.”
The seizures increased in duration and intensity. By early fall of last year, Amaya was having seizures every couple of days and those attacks left her unable to breathe for 30 to 40 seconds. After a seizure, Amaya is worn out.
Around that time, Amaya’s neurologist at Nemours conceded that treating her epilepsy with medication soon would no longer be a viable option. The neurologist suggested that Amaya undergo tests to determine if she would be a good candidate for a hemispherectomy, a surgical procedure reserved for patients with extreme epilepsy.
Amaya underwent a series of tests and evaluations in late November and then, after some conflicting findings, more testing and evaluations were performed on her in January. The tests included an MRI of her brain and electrocardiogram.
“They try to pinpoint where the seizures start so they can remove that area of the brain,” Dangerfield explained, adding that, in regard to Amaya, “They were able to narrow it down. We got the news in March. It was all coming from the right side of her brain.”
So on Thursday, surgeons will remove the right side of Amaya’s brain, which, as with any human, controls the left side of her body.
Amazingly, the side effects of removing the right side of Amaya’s brain will be relatively minimal, according to her parents.
“She will permanently lose function to her left hand, and she’ll have left peripheral vision loss in both eyes,” Dangerfield said.
McCoy said it is hard to grasp that removing the right half of Amaya’s brain wouldn’t have much greater adverse effects. As were some of his friends and relatives, McCoy was astonished when he learned about hemispherecto- mies, he added.
“It’s more of a disbelief,” he commented. “A lot of people did not know such a surgery was even possible.”
On Monday, the family drove to Cleveland, a trip that took about nine hours. Tuesday’s schedule will be filled with pre-operation tests and appointments. The family will rest on Wednesday in preparation for Amaya’s surgery, which is scheduled to start early Thursday morning.
After the surgery, Amaya will spend months in physical therapy designed to teach her left side of the brain how to perform the functions that the right side of her brain had handled, according to Dangerfield.
“She’ll have to learn to sit up all over again. Recovery will be hard,” she said.
Because she is a registered nurse at a children’s hospital, Dangerfield has been able to maintain a clinical perspective, for the most part, when interacting with neurologists who have been treating Amaya. But she also is Amaya’s mother. “This surgery is scary and it is difficult,” Dangerfield said. “We have to keep reminding ourselves that this is about the quality of life for Amaya. This is just a moment in time. Once we get passed all of this, she’ll be able to have a life like any other kid.”
McCoy expressed a similar sentiment.
“We’ll be able to go through a day without worrying about her and watching her all the time. She won’t have any more seizures. We won’t have to see them (seizures) and wonder if this is the one when we watch her draw her last breath,” McCoy said, before turning his thoughts to Amaya’s postsurgery life and adding, “After everything is said and done, there will be relief.”
Friends and family show off their support T-shirts during Saturday’s presurgery party for Amaya McCoy (white shirt, front row, held by mom).