Greta Zilch celebrated her third birthday much like any other toddler.
Her family and friends got together for a princess-themed party April 16 at her grandparents’ home. Like so many 3-year-olds, Greta loves the Disney princesses, especially Elsa and Anna from “Frozen.”
“She sings the songs all the time even though she’s never seen the whole movie,” her mother, Jaime, said with a laugh.
Saturday’s celebration was special, not just because of the theme or friends and family who gathered. It was the first time the 3-year-old marked a birthday with a party. It also marked about 15 months since the toddler received a new heart, and the celebration coincided with National Donate Life Month, a month dedicated to raising awareness about organ donation.
“That someone chose to give life in their time of sadness ... I can’t even thank the family enough,” Jaime said of the heart donor’s family, who remains unknown to the Zilch family.
Greta was born prematurely at 28 weeks’ gestation because of her mother’s severe preeclampsia, which is the new onset of high blood pressure during pregnancy. Greta spent her first four months in the neonatal intensive care unit at Ann and Robert H. Lurie Children’s Hospital in Chicago.
It was during that time she was diagnosed with cardiomyopathy, a serious condition that affects the heart’s ability to pump blood. In the U.S., pediatric cardiomyopathy affects about 1 in every 100,000 children, the majority of those diagnosed under the age of 12 months, according to the American Heart Association.
Greta went home with her parents after four months in the hospital. During the ensuing months, Greta was seen twice every three months by the cardiology department at Lurie. A spring appointment in 2020 was postponed due to the pandemic.
Early in June 2020, Jaime and her husband, Sean, noticed some changes in Greta. She was vomiting and had become pale and lethargic. They rushed to the emergency room.
“Her heart rate was in the 300s,” Jaime recalled. A normal range for infants is 80 to 160 beats a minute.
Greta was rushed back to Lurie. Her initial days at Lurie involved a series of medications and procedures to control her heart rate. None of it worked. Doctors told the Zilch family that Greta’s heart could no longer function on its own. She needed a transplant.
First, doctors needed to insert two atrial assist devices to keep Greta’s heart working until a donor’s heart was available.
Greta underwent the eight-hour open-heart procedure to insert the atrial assist devices, also known as a Berlin heart, on June 15, 2020. She was placed on the donor list the next day.
“When we were told she needed a transplant, I didn’t even think where the heart was coming from,” Jaime said, adding that working through the reality that the donor heart would come from a child who had died was difficult.
“I thought about the family ... every day,” she said. “I put myself in their shoes and never lost in my mind that someone would have to make this unimaginable decision.”
After seven months of waiting, Greta’s heart arrived about midnight Jan. 7, 2021.
Members of the Cook County sheriff’s office, where Sean works as a deputy, escorted the heart from the airport to the hospital as a show of support to the family and a way to honor the life-giving gift that was being given to their co-worker’s daughter.
“Watching them come toward us with the special fight of life for our daughter was so powerful,” Jaime said, recalling the sound of the wailing sirens coming toward the hospital, signaling the arrival of the donor’s heart. “We will never forget that miracle moment.”
Greta’s medical team continues to monitor her progress as she works through developmental delays due to her premature birth. She remains on anti-rejection drugs for her new heart, and her family is careful about being around others who are sick.
Although they take precautions to keep Greta healthy, Jaime said her family tries to balance those challenges with living in the “here and now” and celebrating Greta’s successes.
Greta turned 3 on Tuesday and will be starting preschool – a milestone they weren’t sure would ever come. Greta enjoys reading, princesses, pretend play and singing. She plays with her 8-year-old brother, Liam, who can get the toddler to giggle like no one else.
In celebrating this month, the Zilch family has not lost sight of the gift given to their daughter 15 months ago. They remain hopeful that one day they can say thank you.
“We are forever grateful to the family who chose to give our daughter a second chance at life during an extremely difficult time of loss,” Jaime said. “I think about this family often, and I hope that one day they will be able to see Greta and how well she is doing and find comfort in the fact that their child saved mine.”
https://www.dailyherald.com/news/20220416/we-are-forever-grateful-happy-3rd-birthday-to-greta-15-months-after-she-got-a-new-heart