Jose Figueroa Jr. was the youngest of three children. His big sisters adored him. He loved to go with his parents and sisters to the museum, to the park, and especially to the zoo. As a family, they were always out and about making lasting memories with Jose and his sisters. Those wonderful memories took a turn when Jose and his mom received bad news in August 2019. When Jose was 3 ½ years old, his parents noticed that his eyes moved slightly to the left. Jose’s eye movement was faint, but he had no other complications, so his parents were not worried. His mom took him to see his primary care physician who referred him to an eye doctor who then referred him to a children’s hospital for further diagnosis.
They were blindsided when their son was diagnosed with a possible glioma, a very small, slow growing brain tumor. Still, the news was not as bad as it could have been. Jose’s oncologist told his parents that his tumor was tiny – the size of a grain of rice – and that he should reach adulthood with little to no problems from it. Scans of the tumor showed no growth, however the provider continued to order MRIs. Jose’s mother noticed that he was losing coordination and began to fall for no reason. His condition declined after each MRI, but the oncologist had no answers for them. Jose’s parents thought that, given his diagnosis, if the tumor wasn’t changing the MRIs could be to blame.
They sought the help of a doctor who specialized in a disease caused by the contrast dye used for MRIs, called gadolinium. The specialist examined Jose and determined that his complications fit with the timeline for gadolinium toxicity, also known as Gadolinium Deposition Disease or GDD. In a letter to Jose’s providers, the specialist stated that, “I am doubtful that a low grade slow growing tumor could result in his catastrophic neurodegenerative condition.” He continued, “I request that you honor Evelen Martinez’ request for her son to not undergo further MRI’s. If he does have childhood GDD then even non-contrast MRI can make it even worse.”
Jose’s mother returned to his doctors with the letter and reiterated her concerns. Their response was to order another, longer MRI scan. Jose’s mother asked her son’s providers to test him for gadolinium, but she was told that they did not have the test available. She asked them to send the test to the Mayo Clinic and they still refused, telling her that they didn’t think her son had an adverse reaction to gadolinium. Fighting for the welfare of her child, Jose’s mother did not give consent for the MRI. Jose’s providers then contacted the Department of Children and Family Services who insisted that Jose needed the MRI and he would receive it with or without her consent. Following the MRI, Jose’s mother was horrified to see that his teeth, hands, legs, and fingers were burned and learned that he had coded during the MRI. Shortly afterwards, Jose passed away. He was five years old.
Jose’s parents contacted many lawyers. No one would take their case but urged them to continue to pursue legal action. They could not understand how their child could die with no accountability. They soon learned of the cap on medical negligence cases and how this almost 50-year-old law discriminates against children and people of color.
Their daughters miss their little brother and can’t understand why he never came back home. They feel their son’s death could have been prevented and don’t wish for any other parent to endure what they have. Their hope is to educate other families and save someone else’s life.