Jeremiah’s journey began before he was even born. His family was alarmed when their six-month ultrasound came back abnormal. After a prenatal test, they were informed that their sweet baby boy would be born with osteogenesis imperfecta (OI), a rare genetic disorder that causes fragile bones and other health complications.
When Jeremiah was born via c-section, he was taken to the neonatal intensive care unit (NICU). At first, he seemed to be doing well. But, a few days later, he developed pulmonary hypertension, a potentially life-threatening condition. Despite the best efforts of the NICU team, Jeremiah’s health continued to decline. He was intubated three times and became severely overweight, which put additional strain on his fragile body.
As the doctors struggled to find a solution, Jeremiah’s mom, Jasmine, joined a support group on Facebook. There, she connected with other moms who had faced similar challenges with OI. They informed her about the talented OI team at Nemours Children’s Hospital, Delaware. Despite living far away, Jasmine made an appointment for Jeremiah with the Nemours Children’s team, hoping that they could offer him the care he needed.
When the family arrived at Nemours Children’s, they were pleasantly surprised to learn that the OI team already knew about their son’s case. The team had heard about Jeremiah from the other mothers in the Facebook support group, who had been advocating for him and sharing his story. Overwhelmed with gratitude, Jasmine knew that Nemours Children’s was the right place for Jeremiah.
Over several months, Jeremiah underwent several procedures, including a VP shunt, port placement, and a g-tube. He also received Pam infusions every eight weeks to help strengthen his bones. Despite these challenges, Jeremiah continued to fight, and began breathing on his own without a trach.
“Honestly writing this and talking about his experience has me in tears because he’s gone through so much!! But he’s such a fighter and a happy baby!! So, if we must fly or drive to Nemours every eight weeks to get the best care for him, we will do it! It’s worth it. I’m grateful that he’s home and getting to see my baby bond with his siblings every day is a blessing. I’m so grateful to those moms who advocated for my son, when I had no idea they were doing that. All of the doctors, nurses, our favorite social worker Katie Harp, and everyone was phenomenal. They saved my baby’s life! I’m forever grateful. Every chance I get, I refer other moms to Nemours Children’s Hospital, Delaware!”
