Justin Zetino was truly passionate about music. He had a deep admiration for the band Mana and held a special place in his heart for Eric Clapton. Besides his love for music, Justin enjoyed showcasing his dancing skills. He also loved baseball and cherished the times when he could attend Dodger games with his mom and siblings. Road trips were another one of Justin’s favorite activities, particularly when they involved visiting his grandparents in Las Vegas. Additionally, he found joy in watching his favorite shows on his iPad, such as the Backyardigans and Dora the Explorer. Justin deeply treasured his relationships with his siblings, finding different ways to bond with his older brother and sister. His love for his family was evident, as his dialysis sessions were always accompanied by a caring family member.
Justin was a patient at a local Children’s hospital since the day he was born. He was born with a condition known as Dravet Syndrome which is a severe form of epilepsy of infancy. Following his birth, it was discovered that Justin had a tumor in his abdomen that was placing pressure on his lungs causing his lung to collapse. A biopsy was conducted which revealed that Justin had Neuroblastoma which required chemotherapy. A possible side effect of chemotherapy is kidney failure. Twelve years later Justin was diagnosed with kidney failure requiring dialysis.
Justin faced numerous challenges during his nine years as a dialysis patient, which made things quite difficult at times. On some occasions, his mother could see that proper infection control was not being followed. Concerned for not only her son but all the pediatric patients in the unit, Justin’s mother Christine filed a complaint with the Department of Public Health. The findings from the Department of Public Health verified that the cleaning solutions used to disinfect the hemodialysis machines were contaminated.
Justin’s mother felt the weight of retaliation against her son after reporting the failure of state regulations but Justin’s future in the pediatric dialysis unit came to an abrupt end after his mother reported a sexual assault of a teenage dialysis patient. After she reported a health care professional openly fondling a female patient, Justin’s care providers tried to move him to a hemodialysis unit that could not accommodate him. Justin’s provider would not provide the contact information for the dialysis unit or the onsite provider to Justin’s mother. There was no plan of care set for Justin when the hospital stated that they would never drop Justin without a plan of care in place. Justin’s mom contacted the dialysis unit on her own only to confirm that they did not have the resources available to treat him. The manager of the unit recommended that she turn down the transfer which she did.
The day following Justin’s birthday his medical transport company contacted Justin’s mom to let her know that the hospital’s dialysis unit told them to not bring Justin to the hospital because he was no longer a patient there. They were told he was no longer allowed on campus. Justin’s mom went to the hospital to seek help from Justin’s primary provider. Following the meeting, his provider recommended that Christine go home and she would contact her with a plan. As she left, Christine was met in the hallway by hospital staff that escorted her out of the hospital. Justin was left with no viable treatment center available to meet his dialysis needs. Due to his complex physical condition and a special dialysis access, Justin required receiving dialysis in a bed instead of a dialysis chair. Since there were no other dialysis units in the region that could accommodate Justin’s needs under the Americans with Disabilities (ADA) act. Justin was left with no viable treatment center available to meet his dialysis needs.
A week prior, Justin’s mother alerted his physician that Justin was exhibiting symptoms of an infection. Justin’s primary care doctor did go visit him at bedside at dialysis. Justin’s mother asked for her son to be cultured but she was told that they were not going to order a blood culture stating that he was not concerned since, in his estimation, Justin regularly suffered from fevers. Justin’s mom called his Nephrologist to intervene, but he never returned her call. Justin’s infection was left untreated at the time that he was removed as a patient. When his mother fought to try to get dialysis treatment for her son, the office PA told her that they would take care of it. Later that day, Christine received a call from the hospital informing her that Justin was no longer a patient there. She was told that they needed the bed for a new patient and there was no space for Justin.
Dialysis is considered life support, and Justin now had no dialysis unit to go receive lifesaving treatment. Justin’s mom called USC asking them what she should do. They told her to bring Justin to their unit and they would deal with the Children’s hospital, but Justin had a fever of 103.9 and was not feeling well. Christine called 911 and Justin was taken to the closest hospital. While at the local hospital, Justin was placed in the geriatric ward where he suffered from 103-degree fever for 12 days. He was not cultured for an infection for 3 days. They wouldn’t even give him Tylenol. At day 15 in the hospital with no treatment for his infection, the hospital tried to discharge him. Justin’s mom called Medicare and filed an appeal to keep him in the hospital. After 15 days, they finally took a culture, and it tested positive. After filing the appeal, the medical director from the Children’s hospital contacted Christine and had Justin transferred to UCLA, the Santa Monica campus. Justin’s infection left untreated for so long caused him to decline quickly at UCLA. He was transferred to ICU in critical condition but with no treatment for so long it was too late. Justin died.
An autopsy was done at Ronald Regan UCLA Medical Center that revealed that Justin suffered from an infection for a couple of weeks. He died of sepsis due to an untreated infection.
Seeking more answers, Justin’s mom filed a complaint with the local health department. The health department’s inspection revealed infection prevention and control problems in the dialysis unit and in the operating rooms. The hospital failed to ensure that the Condition of Participation: Infection Prevention and Control and Antibiotic Stewardship was not met when bleach disinfectant (used to clean dialysis machines) bottles had a black, brown, and orange substance growing around the top, multiple surgical instruments were not cleaned and disinfected, single-use syringes were reused, and brushes used to clean soiled surgical instruments were not cleaned in between each use.
Christine feels that her son was declined treatment and removed as a patient because of her advocacy. Christine will continue her advocacy until special needs patients and patients with disabilities received safe care and the providers that cause them harm are held accountable.