SURGERY

Cecil Whig - - FRONT PAGE -

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.”

CE­CIL WHIG PHOTO BY CARL HAMIL­TON

Friends and fam­ily show off their sup­port T-shirts dur­ing Satur­day’s presurgery party for Amaya McCoy (white shirt, front row, held by mom).

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