Myocarditis
Bubbly, happy, joyful and a warrior—all words used to describe Arianna. On June 26, 2018, Arianna Hernandez entered the world as a healthy baby girl. Her mom, Verenice Aguilera, said she experienced a pregnancy without any complications. But her whole life turned around after Arianna was diagnosed with myocarditis and chronic kidney disease less than a month before her first birthday. Arianna fought valiantly for more than four and a half years, but on November 27, 2023, she lost her long-fought battle. Her family wants her life to be a tribute and her story shared as a reminder to always smile and enjoy every second of life. This is Arianna’s warrior story of clinging to hope and spreading contagious joy despite walking through the most fearful circumstances of her life.
On May 28, 2019, Arianna’s family received devastating news.
They noticed she did not seem to be feeling herself—she was vomiting, and her skin color changed drastically. Critically ill, Arianna was transferred from Huntsville Hospital to Children’s of Alabama, where she was diagnosed with myocarditis which occurs when the heart is severely weakened by infection or inflammation. She was placed on extracorporeal membrane oxygenation (ECMO) and then transitioned to a left ventricular assist device. ECMO is a heart-lung bypass machine that helps critically ill and injured patients get oxygen to their blood while giving their heart and lungs the chance to heal. It is used only after all other medical treatments have failed and the odds of survival are slim.
A week after Arianna arrived at Children's, she was added to the heart transplant waiting list. “We kept being hopeful that Arianna’s current heart would get better. We thought that if we waited a few weeks or a couple of months that her own heart would improve,” Verenice said. “We continued to have faith, but a new heart was needed for her.” Arianna spent the next four months being treated by the doctors and nurses at Children’s as her family eagerly waited for a heart.
In the fall of 2019, Arianna’s family received the life-changing call they had been waiting for: There was a heart for Arianna. On September 16, 2019, Arianna had her heart transplant. She made a great recovery and returned home to her family in Decatur, Alabama. Arianna continued to recover from her transplant surgery until March 2020 when she was diagnosed with chronic kidney disease. She was also in and out of Children’s for other issues including a gastrointestinal bleed. Nevertheless, through each of these obstacles, Arianna’s family never lost hope. The unwavering strength and joy Arianna exuded helped her family see the light at the end of the tunnel through each trial they faced.
In 2022, Arianna was diagnosed with post-transplant lymphoproliferative disorder, or PTLD, a condition in which a tumor grows in the body after an organ transplant in a patient with a weakened immune system. She faced treatment for PTLD just as courageously as she faced every health struggle in her life. She then remained in remission and saw an oncologist every couple of months. Arianna was not on the waitlist for a new kidney yet because she had to wait until two years after the PTLD occurrence to be tested for eligibility.
As Arianna battled her kidney disease, her family relentlessly referred to her as a “warrior.” This spunky and joy-filled 5-year-old was like any other child—she loved dancing, listening to music, playing with her brother, being outdoors, coloring, completing puzzles and even doing physical and occupational therapy at Children’s. “She lived her life to the fullest outside of the hospital,” Verenice said.
Tough times called for a village of supporters. Verenice said their family and friends walked by them through every decision they made for Arianna from the beginning. Their community of loved ones even joined them for prayer nights at the beginning of Arianna’s health journey and for dinners at home so Arianna could enjoy their company.
As family and friends offered support, nurses and doctors at Children’s continually provided life-saving interventions. “Her experience at Children’s was a blessing to me and my family,” Verenice said. “The staff treated her like their own. Their love for her was evident in each of their interactions. They are like family to us.” If it weren’t for Children’s heart and kidney teams, Arianna wouldn’t have lived as long as she did.
Arianna continued to do hemodialysis treatments three times a week, but other than that she just dealt with the flu every once in a while. Verenice said they took her to Children’s on November 12, 2023, as she was struggling to breathe. Arianna’s oxygen numbers were lower than normal, and she eventually went to the ICU in the dialysis unit. Her doctors determined she had RSV which ultimately caused her lungs to fail. The doctors said there was nothing else they could do for Arianna at this point in her battle. “Ari’s dad and I had to make the hardest decision of our lives, and we believed it was time to let Ari go,” Verenice said. “As much as we wanted her to be here, we knew she had suffered a lot, and we couldn’t be selfish by physically keeping her with us.” Arianna’s parents held her as she took her last breath. Arianna passed away on November 27, just a few days after Thanksgiving.
Arianna’s family often says, “God gives his hardest battles to his strongest soldiers.” She was a happy little girl, and many who met or knew her said she seemed happy despite her health struggles. Arianna’s joy and smiles brought joy to her family and kept them going. “We have a close friend that would always tell us Arianna is our reason who kept us going,” Verenice said. “Even though she isn’t physically here anymore, she is our reason.”
Arianna’s family knows she didn’t win this health battle here on earth, but they also know she’s in heaven walking around, playing and maybe even watching her favorite show, “Trolls.”
“Arianna will always be our warrior, champion, fighter and princess,” Verenice said. “Everyone that knows Arianna has learned something from her, and we hope she stays in everyone’s hearts forever.”
