Becoming a parent of twins is a life changing event. There’s excitement, anticipation, and at the same time fear, as the arrival of multiple newborns can bring medical, logistical, financial, and emotional challenges. Now imagine your newborn in the neonatal intensive care unit. Suddenly you are forced to navigate intensive medical care for your newborn without any support. That is what it was like for Brianna and Fred, her husband, whose son Ari was born with severe kyphosis, scoliosis, and a chronic lung condition. “I was so discouraged when we brought Ari home from the NICU because we were thrust into this situation with very little warning and hardly any support. We also had another preemie at home to care for as well,” said Brianna.
The first three years of Ari’s life, Brianna and Fred faced a lot of challenges with coordinating around the clock care and navigating insurance. In 2019, Ari had a major spinal fusion, which left him unable to walk or stand. Ari requires a wheelchair and has to wear oxygen at night as he has chronic lung disease and requires a g-tube. With no insurance coverage for nursing services, Ari’s dad left his job. The move from a two-earner household to a one-earner household was tough, but necessary as Ari could not be left with someone without a medical background or training and an out of pocket, private duty nurse was not affordable.
Thankfully, Ari’s dad took the time to complete the Maryland Model Waiver application, a daunting task that Brianna was unable to take on as a new mother of twins. Once enrolled into Model Waiver, Ari and his family were linked to a Clinical Care Coordinator at The Coordinating Center who helped Ari’s parents obtain the maximum covered nursing services available under the Model Waiver. Not only was Ari’s mom able to return to work, but Ari got to go to school with nursing services secured by his Coordinator and covered under the Model Waiver.
“Providing care for a person who has long-term skilled care needs is a full-time job with no relief. Our lives revolve around Ari and his care needs. We interact with others sparingly, we rarely engage socially with other people, I have a pantry section of just medical supplies, and we have spent hours upon countless hours dealing with health insurance issues.” Having in-home and in the classroom nursing services is a game changer! Ari, who is now four-year’s old is thriving. “Ari is very bright. He is fascinated by robots, and he loves playing with his twin sister, Sloane, and his older sister, Lennah. Being an extrovert, Ari makes friends easily. Ari is also very particular about his care and knows what he wants, what he doesn’t want, and isn’t shy about telling us,” says Brianna.
Brianna says, “My advice to others considering The Coordinating Center would be to get all of your initial paperwork completed, even if it feels futile or insurmountable. Our coordinator moved several mountains for us to ensure Ari got the help he needed, and we are forever grateful!”