At a holiday festival in Utica, N.Y., little Sophie McLaughlin climbed onto Santa’s lap and asked for just one thing: a new heart for her mother.
The white-bearded man was puzzled. He didn’t understand the toddler’s mother was very sick and waiting for a life-saving heart transplant at UR Medicine’s Strong Memorial Hospital in Rochester. Sophie and brothers Nathaniel, 7, and Henry, 6, and sister Gabby, 11, who lives out of state, missed her terribly. They hadn’t had one of her hugs in several weeks.
Stephanie McLaughlin, 37, was diagnosed in 2018 with sarcoidosis, an inflammatory disease that causes scarring in several organs. The disease was affecting her heart and she was in advanced heart failure. Medications, a pacemaker and an implantable cardioverter defibrillator (ICD) stabilized her heart function for more than a year but couldn’t stop its rapid decline in October.
“I was so tired, so sick, so nauseous then. I couldn’t walk from room to room without sitting down to rest,” McLaughlin said. “I knew something was very wrong.”
She was gravely ill when a helicopter transported her from St. Elizabeth Hospital in Utica to Strong Memorial Hospital, where experts in sarcoidosis and advanced heart failure worked feverishly to support her heart.
McLaughlin needed a heart transplant to survive.
“I was terrified. I kept thinking I can’t die. My children need me, they are still so little,” said McLaughlin, a school psychologist. Her husband, Steve, juggled family and work responsibilities, with the help of relatives, and kept in close contact with her.
Fulfilling Sophie’s request of Santa would be nothing short of a miracle. Family and friends were praying for one, too. On Dec. 4, a generous stranger made their wishes come true.
UR Medicine’s heart transplant team gave McLaughlin a second chance and a new heart. Cardiac surgeon Bryan Barrus, M.D., and anesthesiologists Wendy Bernstein, M.D., M.B.A., and Laurent Glance, M.D., performed a five-hour surgery. Strong Memorial Hospital is Upstate New York’s only heart transplant center.
“When I woke up and my chest hurt. I couldn’t speak because of the chest tube, but I knew I made it,” McLaughlin said. “It was the moment I’d been waiting for and it was finally here!”
She was excited to return to her Oneida County home and hug her children. “When you face something like this, you realize what’s really important. It’s being with your family, treasuring everyday moments, taking nothing for granted because tomorrow is not guaranteed.”
What is sarcoidosis?
Sarcoidosis is a complex disease that causes inflammation of multiple organs, most commonly lungs and lymph nodes, but can also affect the heart, liver, kidneys, eyes and skin. The inflammation can cause damaging scars in the organs, which can lead to more serious problems. The cause is unknown and there is no cure.
When the disease is discovered in the heart, symptoms include fainting, arrhythmias, shortness of breath and fatigue. It can lead to heart failure.
McLaughlin’s diagnosis followed a series of fainting spells. When she sought emergency care, doctors suspected the diagnosis, but requested further testing and confirmation from specialists with UR Medicine’s Comprehensive Sarcoidosis Program. Vidula and pulmonologist Robert M. Kottmann, M.D., lead the program, which focuses on care for all forms of the disease.
“It takes an experienced, multidisciplinary team working together to provide the care needed for patients with sarcoidosis,” Vidula said. McLaughlin, who experienced most of the common symptoms of cardiac sarcoidosis, was cared for by Vidula and electrophysiologist Mehmet Aktas, M.D..
“When she was airlifted from Utica to Strong, she was very sick. Her heart was extremely weak and her other organs were at risk,” Vidula said. Doctors used intensive mechanical support, called extracorporeal membrane oxygenation or ECMO, to bolster her heart function to protect other vital organs.
Just a few days later, the donor heart became available, and young Sophie’s request to Santa was answered.
Power of organ donation
Life-saving organ transplantation is not possible without the generosity of donors. The number of people who need new organs far exceeds the number donated each year.
In New York state, there are nearly 10,000 people who need an organ transplant, according to the Finger Lakes Donor Recovery Network, the organ procurement organization affiliated with the University of Rochester Medical Center, in partnership with other Upstate New York hospitals.
About 6 million, or 38 percent, of eligible New Yorkers have registered to be an organ donor, which is well below the national average of 58 percent. In the Finger Lakes Region, 51 percent of eligible adults have committed to the state’s registry.
At Strong Memorial Hospital, which provides heart, liver, kidney and pancreas transplantation, there are 550 people on waiting lists, including 43 who need a heart.
To learn more or register to be an organ donor, go to: donorrecovery.org.