Little Fighter Keeps It Strong
WARSAW — Malinda Feeny, Warsaw, can recall at age 17 being told she could not have children.
On Oct. 5, 2014, she defied the odds when she gave birth to a son, Zedekyah. Though he had arrived early and doctors suspected a heart murmur, Feeny and her husband, Trent, did not think they had much to worry about.
“Heart murmurs run in my side of the family,” Feeny said.
A few days later, their joy gave way to fear when the doctor informed them a Riley specialist was on his way.
“I was devastated at that point,” Feeny said. “I was thinking, ‘a Riley specialist? OK, it’s serious.’”
Doctors diagnosed Zedekyah with truncus arteriosis. Feeny explained that a healthy person has four valves, through which blood is pumped. Zedekyah has only one. That one valve, Feeny said, was moving both good and bad blood, which in turn affected Zedekyah’s lungs, resulting in pulmonary adema.
Feeny did not have long to hold her son before he was loaded into an ambulance and transported to Riley Children’s Hospital. The Feenys followed in their car.
“It was a long, silent drive,” Feeny said. “Me and my husband, we just didn’t know what to say.”
Doctors scheduled surgery for Zedekyah, on Nov. 11. However, he was so small and the risks so high — he had only a 25 percent chance of surviving — Feeny requested they wait until he had gained some weight. The surgery was postponed until Dec. 1.
In all, the Feenys were at Riley four months. During that time, Zedekyah was also diagnosed with malacia of the airway, GERD, a left leaky valve and narrowing arteries of the heart. He would eventually need more surgery to keep his arteries open.
Zedekyah was finally allowed to go home in January, on oxygen and with an NG tube that the Feenys had to take classes to learn how to care for. They also learned Zedekyah would need to have open-heart surgery twice a year, every four years, until adulthood, in addition to multiple doctor appointments every month.
It did not end there, however. By February, the Feenys noticed he did not seem to be passing urine as often as he should, so they took him to see a urologist, who diagnosed him with kidney reflux disease. Doctors put Zedekyah on an antibiotic, but said he would need surgery eventually.
“I was like, no more surgeries,” Feeny said. “This kid, he’s mighty and he’s small, but he’s been through so much more than I’ve been through in my own lifetime, and he’s not even a year old.”
In April, the first Riley bill arrived.
“I about died,” Feeny said. “It was over $1 million.”
Feeny went to booster.com and began a sweatshirt fundraiser, selling sweatshirts for $35 apiece. The minimum required, however, was 50, and Feeny was only able to sell 25.
Two months and another procedure later, Zedekyah is slowly gaining weight and is up to 13 pounds, 4 ounces. Meanwhile, Trent has created a Facebook page for him, Ky Strong.
“I tell everybody I come in contact with because I want people to know about the struggle,” Feeny said.
Feeny is also planning to launch a GoFundMe account for Zedekyah.