National Donor Day urges public to consider, register for organ donation
February 15, 2016 12:00 AM
Heart transplant recipient Jameson McKain, 5, of Cecil drops the puck Sunday during a National Donor Day event at the Carnegie Science Center Highmark SportsWorks.
Faith Kilkeary, 12, a heart transplant recipient, climbs the rock wall during a National Donor Day event Sunday at the Carnegie Science Center Highmark SportsWorks.
By Gretchen McKay / Pittsburgh Post-Gazette
Julie Kilkeary’s prenatal ultrasound at 20 weeks in 2003 should have been one of the happiest days of her life. Pregnant with her first child, she was about to find out if she and husband, Kevin, were having a boy or a girl. Just a few minutes into the procedure, though, the technician paused with concern.
“Please don’t tell me there’s two!” Mrs. Kilkeary recalled joking. The tech didn’t smile back.
The scan revealed signs of hypoplastic left heart syndrome, a rare congenital cardiac defect in which the left side of the heart is severely underdeveloped. A fetal echocardiogram hours later confirmed the devastating diagnosis, along with the treatment: Do nothing, and let their daughter Faith pass, or have three open-heart surgeries to reconfigure her cardiovascular system by the time she was 3 years old.
The McCandless couple decided on the surgeries, known as “staged reconstruction,” even as they worried about the pain it would cause their baby; success rates, Mrs. Kilkeary said, “are astronomical.” And sure enough, Faith sailed through the first two operations. By her first birthday, though, she was in heart failure. Only a transplant could save her.
As Mrs. Kilkearny recalled at a National Donor Day celebration Sunday at the Carnegie Science Center Highmark SportsWorks, it was a horrible decision to make, because saving Faith’s life would come at the expense of another family’s sorrow. “My child would live when someone else was burying their child on the same day,” she said.
Danielle McKain of Cecil can relate. Her son Jameson underwent a heart transplant for the same condition in 2011, and the bittersweet emotions the operation stirred up continue to percolate below the surface.
“On the one hand, you’re so mad their heart has failed, but so happy when they [come out of the transplant operation] pink,” she said.
“Everybody,” she added, “should be on the transplant list.”
Eleven years after her January 2005 transplant, Faith is not just surviving but thriving. While it’s not a cure — retransplantation is a reality in the care of patients like her — her latest biopsy shows zero rejection, and doctors no longer consider her to have a heart condition. A bubbly sixth-grader at St. Alexis School in McCandless, the 12-year-old plays basketball and tennis, takes dance and piano lessons, and delights in bossing around her four younger siblings.
“Organ donation not only changed her life, but ours, too,” said Mrs. Kilkearny, gesturing behind her, where her daughter — all smiles — was scaling a 25-foot rock wall. ”And she can ride the roller coaster, too!”
Jameson, 5, also is doing well. “Baseball,” his mother said, “is his life.”
Designed to coincide with Valentine’s Day, National Donor Day was established in 1998 by the U.S. Department of Health and Human Services and others to raise awareness of the alarming statistics around organ donation. Currently, there are 122,000 patients nationwide awaiting a lifesaving organ. In Pennsylvania alone, 8,000 people are in need of a solid organ, and many more await tissue, bone marrow or cornea transplants.
“And unfortunately, every 18 hours we lose an individual everyday in Pennsylvania because an organ was not available,” said Susan Stuart, president and CEO of Center for Organ Recovery & Education, a regional not-for-profit organ procurement organization and co-sponsor of the event with Donate Life PA.
Count Jacob Pribanic, 18, of Monroeville among those anxiously waiting. He has been on the donor list for three months now due to VATER syndrome, a rare congenital disorder affecting multiple organ systems. He has made it this far with 13 daily medications. But his heart has taken a beating, and a transplant is his only hope if he’s to fulfill his dream of studying culinary arts at Indiana University of Pennsylvania.
“I’m trying to stay positive,” he said, “but it’s scary, because you don’t know when the call will come — when I’m in bed or class,” at Gateway High School. “Plus, it’s a very taxing and complex operation with life-changing effects.”
He, and others like him, should take comfort in the likes of Stacey Vernallis, a retired attorney from O’Hara, who received a new heart in July 2014, after being diagnosed with cardiomyopathy.
Yes, she told the crowd, it’s terrifying to be on The List. But as the gathered transplant moms could attest, it also allows you to say, “We’re going to do this, and we’re going to have another day.”
Donors, Ms. Vernallis noted, are the unsung heroes in the community because their selfless acts offer complete strangers the gift of life. Which is why every morning when she wakes up and realizes she’s alive, she blinks her eyelids to send her 20-year-old donor’s mother butterfly kisses.
“It’s my mission and challenge to convince everyone to register,” she said.
For more information about organ donation, or to register as a donor, visit DonateLifePA.org.
Gretchen McKay: email@example.com, 412-263-1419 or on Twitter @gtmckay.
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