Georgia & Her Son’s Story

In addition to his hemophilia, we knew that something was different about my son from an early age. He wasn’t an easy baby, the terrible twos were so much worse than terrible, and he had almost daily tantrums that lasted for hours. He was finally diagnosed with ADHD and a mood disorder when he was five. It was at this time that he started therapy and medication. Between the ages of five and nine, my son was prescribed more than 15 different medications, that either worked for a short time and then stopped working, or didn’t work at all.

In 2020, at almost 10 years old, my son was in crisis. He was aggressive, violent, and dangerous. He threatened to hurt himself and our family, especially me. In October 2020, my son was extremely dysregulated. When he grabbed a knife and threatened to jump from the railing in our two-story living room, we called an ambulance to take him to the hospital. He was forcibly carried out of our house and brought to the ER. The hospital didn’t have a dedicated pediatric mental health unit, but they recommended inpatient treatment.

While waiting for a placement, my son was admitted to the “7th floor” where kids in crisis were sent to wait. No electronics were allowed, and you had to prove you can “behave” in order to earn TV time. My son saw a “psychiatrist on a cart” for 5 minutes each day and participated in “group” once during his time there, for about 30 minutes. They had “sitters” who sat at the entrance to every room. My son lay in bed, doing absolutely nothing while they did the bed search. We were told that there were no facilities that would accept my son because of his hemophilia. We were given a bunch of excuses, including, “What if he got in a fight?” “ What if he needed to be restrained?” “There’s no place for needles” and “We don’t take kids with diabetes, why would we take a kid with hemophilia?”

After six days, my son was discharged into a less intensive, partial-hospitalization program. It was not the right setting for him and did not provide the care that he needed at the time, but because of his bleeding disorder there seemed to be no other options. Every morning, it was a fight to get him in the car to go. He went to the partial-hospitalization program for a month before being discharged.

My son started on a medication protocol after his discharge that has been mostly successful, and for the most part, he is stable. But I know that things can change at any time. And he may end up in crisis again. If that happens, I hope that because of BD SUMHAC, we will have the tools for him to get the equitable access to treatment that he deserves.