As a current student at Columbia College Chicago, Casey Caruso has accomplished quite a lot for someone her age. It’s not always easy knowing how to respond to the adversities of life, which Caruso learned firsthand when her niece Gigi was born with severe health complications.
Gigi passed away after a 21-month-long fight with consistent heart and lung failure, causing heartbreak within the Caruso family. Despite the sad circumstances, however, Caruso was able to find a light at the end of the tunnel through a charity she subsequently created.
Before Gigi’s passing, Gigi’s mother, Jenni, updated Caruso regularly on how her daughter was doing. When Caruso heard about her niece’s struggles, her heart continued to break, and she worried that she may never see Gigi again.
At the time, Gigi and her mother lived in Atlanta, Georgia, where most of Caruso’s extended family lived. Gigi’s father was “absent and not missed” for the duration of the pregnancy and life of Gigi, which ultimately led Jenni to feel isolated and afraid, but her family proved that his absence was a blessing in disguise when they stood by her side like her child’s father should have.
Gigi was born a healthy eight pounds, and though doctors rushed her into emergency open heart surgery, she managed to live 21 months longer than they expected. In fact, she was pronounced dead during her hospice care three times.
Additionally, Gigi spent an entire year under hospice care before even making it home for the first time. Even when she arrived home, she was under constant medical surveillance.
Doctors performed the open-heart surgery to install an entire left side of a human heart, which Gigi was born without. While synthetic, experts engineered the heart to work as a healthy heart would, and the operation was successful.
“We were lucky she was eight pounds because the doctors said if she were any smaller, it would have been impossible … although they were trying to save their asses because of their misinformation the entire time,” Caruso says.
That misinformation from doctors led to a devastating reality for her family and Gigi, but it was in the darkest moments where Caruso was able to gain inspiration. “When you actually spend every day thinking it’s going to be someone’s last, you really start to remember the importance of laughter,” she says.
Laughter, being one of the values she mentions, is what helped her and her family cope with such a devastating reality.
Her sister Jenni spent every day in hospice care with Gigi, and Caruso would FaceTime with her. She recalls being grateful for the moments when the nurses told Jenni stories that would make her laugh or when Gigi did something cute that cheered her up.
The nurses who Caruso refers to as “the purest of pure” became like family to Jenni and the others under their care at the Henrietta Egleston Hospital for Children. Jenni was “very lucky” to be in Atlanta, where Egleston was the local hospital, because they had a unit specifically for infants and children dealing with heart and lung complications.
The relationships that developed between the nurses and the patients are what inspired Caruso to begin her charity in the first place. She explains that her sister and the other mothers with infants and children under care at the unit developed strong relationships with the nurses and each other.
“Pregnancy and motherhood are so romanticized, with due reason of course, but people tend to forget that a lot of people’s situations aren’t exactly Facebook-ready,” Caruso says.
Caruso has a dainty silver pendant elephant necklace, a gift from Jenni, that the women formed to show remarkable bonds because they were able to sympathize with one another. “The few times I got to visit I had people I had never even met before addressing me by name and asking how school was going,” she says.
Caruso recalls the struggle everyone so openly spoke about at the hospice. Her sister only had Gigi and luckily had the support of her family during the time she had to take off from her work as an educational psychologist.
Even after Gigi passed away, Caruso kept in touch with the nurses at Egleston. “It was the holidays, and I couldn’t help but think about all of the other families with outrageous medical bills and children at home who they couldn’t afford to buy toys for,” Caruso says.
Starting as a kick-starter page, Caruso’s charity called Princess Gigi’s Fund for the Medically Fabulous had an original mission statement of providing 100 percent of the proceeds to gifts for families with children under care in Gianna’s unit. Much to Caruso’s surprise, the page raised $10,000 within the month.
She was amazed by the support she received and couldn’t believe she raised so much money. After her project gained attention, the nurses at the hospital told Caruso many strangers were contacting the unit and offering to help. The holidays had passed by then, but Caruso was still very dedicated to helping the families by extending her charity to last even longer.
Subsequently, a group of the nurses and many strangers came together in the name of Caruso’s charity to hand knit blankets for patients. Each of the volunteers made a blanket for a particular patient. “It was a really amazing idea,” Caruso says. “The volunteers really got to know the patients they’d be making a blanket for, which made it all the more personal.”
She also says that something as simple as a blanket carried more sentimental value than she had initially realized. “When you only have so many days of living left and you’re so young, something like a hand-knit blanket that someone made out of the kindness of their heart really adds to a quality of life, however short it may be,” she says.
When the children or infants inevitably pass, the parents are left with a beautiful keepsake to remember them by.
Caruso says seeing the hospital give away the blankets was “life-changing” and that the experience “shed light on the innate good in humanity.” She thinks that experience had great influence on her thoughts of the modern-day situation.
She says, “It’s just a reminder that relationships are stronger than we think … we have the power to change people’s lives positively by the way we interact with them and by the way we contribute to their well-being. Change doesn’t have to happen on such a large scale like most people think it does.”
Caruso is still making changes in a world that seems so stagnant. Princess Gigi’s Fund for the Medically Fabulous is in the process of registering as a non-profit charity in Caruso’s college city, Chicago, and has the support of the University of Chicago Children’s Hospital.