April is Donate Life Month: New heart means new life for an Illinois toddler 

COTA Kid Greta Zilch, heart recipient. Photo submitted

April is celebrated nationwide as Donate Life Month. National Donate Life Month was instituted by Donate Life America and its partnering organizations in 2003 and features an entire month of local, regional and national activities to help encourage Americans to register as organ and tissue donors, and to celebrate those who have saved lives through the gift of organ and tissue donation.

This month, the Zilch’s family and friends will undoubtedly be promoting donor awareness as a way to thank the family who stepped up and selflessly donated the heart that saved Greta’s life in 2021. April is doubly special for this family because they were not confident when their world turned upside down two years ago they would actually be celebrating Greta’s third birthday this month.

In April 2019, Greta Zilch was born at only 28 weeks due to Mom Jaime’s severe preeclampsia during the pregnancy. During the tiny baby’s four-month NICU stay at Lurie Children’s Hospital in Chicago, it was discovered Greta had cardiomyopathy. Baby Greta was only one month old when Jaime and dad Sean heard this unexpected news. They were discharged and told to have the condition monitored by the cardiology team at Lurie. The family returned to their Wheaton home in Chicago’s suburbs hoping the worst was behind them.

Greta was seen by Lurie’s cardiology department twice every three months, and each time Jaime and Sean were told her condition was stable. Jaime remembers Greta was due for an appointment during the spring of 2020, but due to the COVID-19 outbreak their scheduled appointment was postponed.

In early June, Greta was struggling with extreme vomiting and was becoming very lethargic and quite pale. Jaime and Sean decided to take her to their local hospital’s emergency room for what they thought was likely a stomach bug and dehydration.

Imagine their panic when Greta was hooked up to monitors and her heart rate was in the 300s. Normal heart rates for infants up to 11 months old are in the 80 to 160 range. Given Greta’s racing heart, the family was transferred via ambulance to Lurie Children’s Hospital in the heart of Chicago. The Lurie pediatric cardiology team desperately tried to help Greta, but soon Jaime and Sean learned their precious baby girl was in heart failure.

According to Jaime, “After days of different medications and numerous procedures it was apparent her heart could no longer function on its own. Six days after being admitted we were told Greta would need an assist device for both sides of her heart as a bridge to an eventual heart transplant. This was difficult and very scary news to hear but we knew our daughter’s care was in the best hands, and place, possible.”

On June 15 Greta underwent an eight-hour open heart surgery to have a biventricular assist device placed. A BIVAD is a mechanical device that supports both lower heart chambers. On June 16 Greta was placed on the heart waiting list with a 1A status. Jaime remembers the days following this surgery as being quite challenging. Greta’s lungs were compromised during the open-heart surgery and her little body had a very hard time recovering.

“It was so hard to see her in so much pain during this time while facing the ‘unknowns’ of a heart transplant for our precious baby girl,” Jaime recalled.

It became apparent to Jaime that she would be living in Greta’s room for some time while Sean returned home to work and care for Greta’s older brother, Liam.

Eventually the antibiotics and respiratory treatments started to work. About two months into their hospital stay, Jaime was relieved when she saw glimpses of their sweet girl starting to bounce back. They were able to take stroller rides around the pediatric cardiology unit and Greta was able to start physical therapy, occupational therapy and feeding therapy. Jaime remembers how thankful she was to be able to watch this happy little girl thrive while being confined to a hospital room.

Weeks turned into months and both Jaime and Sean wondered how long it would be before they would receive ‘the call’ that a new heart had been found for Greta. And they also wondered about the medical bills that were obviously accumulating even though the family had good medical insurance through Sean’s employer. A group of friends started a GoFundMe for the family to help them with bills and extra expenses while they waited for Greta’s new heart. But as their stay lengthened, Jaime started doing a significant amount of website research about transplant costs and avenues for long-term help. She also reached out to their transplant social worker who suggested she call the Children’s Organ Transplant Association to learn more about fundraising for transplant-related medical expenses now and well into the future. On Sept, 21, 2020, Jaime placed a call to COTA to learn more about how the organization might be able to help.

The Children’s Organ Transplant Association uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax-deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.

COTA received the family’s paperwork three days later on Sept. 24, and the Zilch family officially became part of the COTA Family.

On Oct. 7, 2020, a COTA fundraising specialist trained the COTA for Greta volunteer team via telephone. The training call included detailed information about COTA’s fundraising strategies (virtual and face-to-face) and step-by-step guidance for utilizing COTA’s online resources and no-cost website, which the volunteers and family would be given for fundraising and sharing Greta’s transplant journey. This group of volunteers quickly started raising funds for COTA in honor of Greta to help with mounting transplant-related expenses.

While Jaime and Sean started to feel an almost instant relief from the COTA fundraising effort being undertaken in honor of Greta, they were also tiring of the wait for Greta’s new heart. In fact, Jaime described the wait as becoming unbearable.

On Oct. 16 Jaime blogged on the COTA-provided website: Yesterday was a very special day for our family. Big brother Liam was able to see Greta for the first time in over four months. It has been a scary journey and COVID-19 has brought a whole different layer to things. In the beginning of Greta’s stay they would not let Sean and I be here at the same time unless it was an emergency. About a month into her stay, they lifted that restriction. Before COVID-19, siblings could come and play together. I am so grateful to the staff for making Liam’s visit happen. Greta would not stop grabbing Liam’s face and Liam did not stop smiling. For now, this time together filled my heart with happiness as we continue to wait for the call.

Jaime blogged on Nov. 11: Tomorrow marks 150 days on the urgent transplant list. She’s been inpatient for over five months. It’s been the longest, hardest wait of my life. I long for this all to be a distant memory. I’m grateful she is growing and thriving but oh how I wish we were home. I told myself she would be home by Christmas. Although that might not happen, I can still hope and pray our special gift comes soon.

It seemed at times to both Sean and Jaime that Greta was never coming home so the family of four could be under one roof again. On New Year’s Eve, they celebrated 200 days of waiting for a new heart.

But then it happened … six days into 2021 … Greta’s team called Jaime with the best new. They had accepted a heart for Greta. Tears of joy started to flow. But there were also tears of sadness for the family who had lost a child that day and had made the selfless decision to donate precious, life-saving organs.

Jaime remembered, “Sean works for the Cook County Sheriff’s Department. His sergeant had mentioned months earlier that when a heart was found for Greta, they wanted to honor it and the donor family with a police escort. My husband and I went downstairs to the Lurie lobby around midnight. I will never forget the moment when we heard sirens wailing loudly on a quiet Chicago night.”

“Watching them come towards us with the special gift of life for our daughter was so powerful,” Jaime said. “They escorted the heart all the way from Chicago’s Midway Airport, and we were able to cheer on the procurement team as they brought the heart up to the cardiology floor. We will never forget that miracle moment.”

Just 20 minutes later, they received a call from the operating room that the first stitch of the new heart had been made. At 6 a.m. the next morning Greta was out of surgery; Mommy and Daddy were able to see her for the first time with her new heart beating in her chest. Greta recovered quickly.

Only 10 days later Greta was discharged and the family of four was once again under one roof in their Wheaton home. Outside of short-term hospital stays, the family has mainly been together at home since Greta’s heart transplant in January 2021.

Looking back over the past several years, Jaime summarized, “When we were first admitted, it was all very unexpected. Our world turned upside down. We have an amazing support system of family and friends who were begging to help. I reached out to a transplant social worker who told me about the Children’s Organ Transplant Association. After talking to a COTA staff member, I instantly knew this would be the best way to fundraise for transplant-related expenses that will be with our family for a lifetime. When you are told your child needs a transplant in order to survive, the last thing on your mind are all of the costs and never-ending bills. Knowing we have COTA on our side removes so much of the pressure of Greta’s transplant journey.”

“Today we are more than a year past Greta receiving her new heart and there are still medical bills to pay,” Jaime said. “We continue to be 100 percent able to focus on Greta and her ongoing recovery because we have COTA to help with ongoing transplant-related expenses.”

Today Greta is thriving. She is a typical toddler and is learning new things each and every day. Greta started walking shortly after she received her new heart and is now running to keep up with her big brother. She loves to read books, play with dolls, sing and dance. Greta just started a ballet class and will attend preschool after her third birthday.

According to Jaime, “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. I think about this family often. 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.”