My son, Joshua, was born with a rare genetic disorder called Angelman syndrome (AS), a complex condition caused by the deletion of chromosome 15. An AS diagnosis is generally accompanied by an additional 20 complex diagnoses, many of which are life-threatening.
In addition to having AS, Joshua, 36, takes a significant amount of medication and has both severe intellectual needs and pica, the tendency to eat things that aren’t actually food. At times, he requires constant one-to-one care, as he is unable to stay in a regular bed, especially if he’s in a hospital, where his curiosity and stress can make him very agitated.
Unfortunately, we have not always received the support and care we need from healthcare providers. For example, once, when Joshua was unable to stand up and bear weight on his leg, and his primary care doctor had referred us to the emergency room, we went to the one hospital that had already agreed to treat Joshua, but still received abysmal care.
Joshua was first seen in triage and then sent to the waiting area. Later, we went through a second triage, where he saw a doctor who determined he needed further assessment and placed him in an emergency room bed. After 14 hours, doctors came to the room to discuss the possibility of an MRI or CT scans, and the need for sedation—even though they were familiar with the fact that sedation does not work for my son.
They took him to the CT scan room anyway and administered midazolam. After three doses of midazolam, Joshua was still not sedated. The doctors said they wanted to admit him; we told them about his needs if he was admitted. The doctors decided they couldn’t admit him after all, due to his needs, and discharged him, saying they would call him back for anesthesia and the CT scan at another time.
They did bring us back, a week later, after they’d brought an anesthesiologist on to Joshua’s case, but in the meantime, Joshua remained in extreme pain and could not walk. After Joshua had finally been sedated and had a CT scan, the doctors determined he had a fractured leg—a stress fracture, possibly from osteoporosis, one of Joshua’s conditions about which hospital staff members were aware. The doctors said they would get him in to see an orthopedic specialist right away, but that took another two weeks.
So, after two hospital visits and inappropriate medications dispensed against our recommendations, and despite the hospital’s own knowledge of Joshua’s needs and health records, Joshua went two more weeks with an untreated leg fracture. Altogether, he was in extreme pain for a total of three weeks.
It is frightening to attempt to advocate for your child in an emergency room setting when hospital staff members are not listening to you. This lack of listening can result in poor, if not negligent, care for a loved one.
Jackie Golden is a member of the Maryland Center for Developmental Disabilities Community Advisory Council.
