In 2012, Jessie Ward and Brian Jenkins welcomed their son Brilen to the world. After his birth, Jessie and Brian opted to run genetic tests after they realized their son was struggling to breathe. Doctors informed the new parents that their son had Trisomy 13 (a genetic condition causing physical and intellectual disabilities) and as a result, likely would not live long. They recommended the family explore hospice care to allow Brilen to pass comfortably, but Jessie and Brian refused, instead choosing to fight for their son’s life. This fight would prove to be extremely demanding. After a month-long stay in the NICU, Jessie and Brian finally took Brilen home where they found themselves resuscitating him up to 15 times a day. Brilen was later diagnosed with Tracheal Bronchial and Laryngeal Malaysia which was causing his trachea to collapse every time he cried, thus, not allowing him to breathe. After two months of caring for Brilen on their own, Jessie and Brian started feeling overwhelmed.
Insistent on fighting for Brilen but in great need of more help, Jessie requested home nursing, but a hospital in East Tennessee refused to fulfill this request because they felt the family should be pursuing hospice care instead. Jessie said she has interacted with several doctors who speak about Brilen and other children with disabilities with complete disregard. Since his birth, Jessie has been told Brilen will be a burden to the family. Specifically, upon admission to a hospital in Middle Tennessee, doctors told Jessie that she had their full support to take Brilen, who was now six months old, off his ventilator and “let nature take its course,” knowing he would not survive without it. Jessie says some doctors treat children with disabilities as if they have no feelings or don’t matter. After a month of pushing back against doctors, Jessie says Brilen was discharged from the hospital due to her advocating for his care.
Today, Brilen is thankfully surrounded by more compassionate providers. Along with his toys, Jessie says Brilen’s GI doctor and primary care physician (PCP) are his favorite things. Jessie speaks highly of Brilen’s PCP Dr. Demetrio Macariola, saying he often thanks her for trusting him with Brilen’s care. Dr. Macariola also worked diligently with Jessie and TJC as we fought to restore Brilen’s home nursing hours.
Brilen was receiving around-the-clock care, but in July 2022, TennCare cut Brilen’s home health hours. This was very concerning for Jessie and her family, as Brilen experiences unpredictable, spontaneous seizures during which his oxygen levels drop and his heart rate skyrockets. Once, Brilen had 22 seizures within 14 hours, and his oxygen levels dropped as low as 68%. For context, Mayo Clinic recommends individuals seek immediate medical attention if their oxygen level falls below 90%. For this reason, Jessie repeatedly stressed to TennCare that reducing Brilen’s home nursing hours could be fatal.
When Jessie came to TJC, she was energetic and passionate about appealing TennCare’s decision. TJC worked with Jessie to get nursing notes and new medical orders from one of Brilen’s physicians, Dr. Macariola, to support the need for intense skilled nursing. In March 2023, TJC successfully represented Jessie and Brilen at an administrative hearing. Today, Brilen receives the level of nursing care ordered by his doctors.
Jessie says she would do anything in the world for Brilen and Gia, his sister. She is a fierce advocate and loving supporter of her children in all areas of their life. In addition to tending to Brilen’s medical needs, Jessie volunteers for the teachers at Gia’s school on weekdays and runs the concession stand at school sporting events on weekends while Gia cheers. Jessie says being a mom means everything to her, and she dedicates her life to making sure those around her are taken care of.
This compassion extends beyond her household to other Tennessee families. Seven years ago, Jessie was put into contact with a mom who, like Jessie, was pregnant with a son who has Trisomy 13. Jessie made it her mission to make sure that mom felt supported. She would call Jessie in a panic saying “My son is doing xyz. Has Brilen ever done this? What should I do?” or “Something is coming out of his G-tube. Is this normal?” Jessie provided her with reassurance as she navigated motherhood with a child with disabilities. Since then, Jessie’s mentorship has only grown. Now, nurses will ask Jessie if she is willing to talk to their patients who are going through similar situations. Jessie says she does it happily because she recognizes how scary it can be at times, and she wishes someone was there for her 11 years ago.
For Jessie, child advocacy is important because children, especially children with disabilities, cannot advocate for themselves. She says she has witnessed firsthand how people treat children with disabilities. Jessie cautions that this work is not easy and a lot of times it is not fun, but she emphasizes that it is so worth it because the smallest acts are the biggest milestones. When she sees Brilen laugh, she is reminded of the day doctors told her he would never show emotions, and it affirms her belief to never give up on a child.
TJC is proud to honor Jessie Ward as a 2023 Mother of the Year for her fierce advocacy for her son’s well-being and her compassionate care for other parents of children with Trisomy 13.