THROUGH THE EYES OF A PARENT
A MOTHER’S 19-YEAR JOURNEY TO KEEP HER SON HEALTHY, PHYSICALLY AND MENTALLY
Giselle M. Bailey’s 19-year relationship with CHOC Children’s began shortly after the birth of her third child, Gavyn. Her baby boy underwent surgery for kidney failure two hours after being born, and was then transported to CHOC’s neonatal intensive care unit (NICU).
For almost three years, Giselle would drive Gavyn to CHOC twice a week for blood work—with his older siblings tagging along. “Gavyn was too young for a transplant, and the goal was to maintain him until he got older and a kidney could be found,” Giselle recalls. “CHOC became a huge part of our routine.”
Miraculously, just before Gavyn’s third birthday, a perfectly matched cadaver kidney from an adult donor in Albany, N.Y., became available. Giselle’s little boy was rushed to UCLA for the transplant—and thus began the second phase of their journey with CHOC… keeping Gavyn healthy post-transplant. “CHOC has been such an integral part of our lives,” Giselle says. “They are like family.”
It’s been a tough, challenging journey for Giselle and Gavyn. Gavyn must take a slew of medications to keep his body from rejecting the kidney (he spent nine weeks at UCLA after one bout of rejection five years ago). “The drugs are nasty, and cause a range of problems including thickening of his heart muscle, necrosis of his hip, horrible GI issues and multiple bacterial infections,” she says, “not to mention fighting with insurance nonstop to cover the medications.”
What Giselle did not see coming, and what threw this strong mother for a curve, was the deep depression Gavyn experienced going through the medical turmoil. His struggles have included self-medicating and self-harming, all in an attempt to cope with the pain and challenges of his chronic condition.
“Unfortunately, while CHOC was supportive, inpatient pediatric mental health services were non-existent in Orange County. This is why Gavyn and I were so heartened to hear of CHOC’s recent Mental Health Initiative, which includes the creation of inpatient pediatric mental health beds,” Giselle says. Giselle and Gavyn were so enthusiastic that they have become spokespeople for CHOC’s initiative, and Gavyn has served as a CHOC ambassador.
In addition to speaking about his journey, Gavyn shares his music—both at CHOC events and in concerts across the globe. An accomplished guitarist and vocalist, Gavyn has toured the world playing to audiences enthralled with his message of love, identity and adulthood. His songwriting skills captured the attention of Warner/Chappell Music, which offered a publishing deal to Gavyn to write songs for the label.
“I hope that young people who face challenges like mine will continue to connect with my music,” Gavyn says. “The ability to inspire others motivates me as a songwriter.”
For Giselle, it has been a long journey, and she is grateful for the support from CHOC. “I still talk to Dr. Antonio Arrieta, Gavyn’s pediatric infectious disease specialist, to this day. He gave me his cell number and helped guide Gavyn’s medical care. CHOC has made an incredible impact on our lives.”