Traumatic Introduction to Hemophilia

Most parents are not introduced to the world of hemophilia by watching their child lay in a hospital bed in a coma, thinking that he isn’t going to be alive in the next six hours. But that’s how we found out our son, Todd, had hemophilia.

When Todd was not quite 3 months old, his infant seat tipped over and he bumped his head. He didn’t have any marks on his body, but I took him to the emergency room because I was an anxious new mother. At the hospital, they took x-rays, told me he was fine, and sent us home.

Around 2 a.m., Todd started crying and whimpering. It was time to nurse him so I assumed he was just hungry. After nursing, he vomited and went back to sleep. Later I learned that the vomiting, which I thought was from eating too much and taking in a lot of air, was actually projectile vomiting, which I had never even heard of at that time. When he didn’t wake up to nurse by 5:30 a.m., I checked on him. He was lying still, looking so peaceful in his sleep. I spoke to him but he did not respond to my voice. I touched him; he didn’t open his eyes. I grabbed a pan and a spoon from the kitchen and stood over his crib and banged. He still didn’t respond.

I didn’t really associate his symptoms with his bumping his head the day before. He had been fine all evening prior to putting him down for the night, and he’d had skull x-rays and they had been fine. The nearest major medical center was 1 hour away, so I called Todd’s pediatrician and he told me to bring Todd in at 9:00 a.m. I talked the doctor into seeing us sooner and he gave me a 7 a.m. appointment. In the waiting room, Todd had projectile vomiting again. The nurse became alarmed and got the doctor right away. Knowing Todd’s x-rays were fine, the doctor assumed Todd had a mild concussion from bumping his head. He suggested that we drive him to the hospital in Syracuse rather than the small local hospital that had seen him the night before, as a precaution.

By the time we got to the hospital, Todd had become totally limp in my arms and the nurses could not find a pulse. They called in a neurologist and rushed Todd in for a CT scan. All four ventricles of his brain were filled with blood, and he had blood pooled around the outside of his brain. Todd was admitted to the pediatric ICU and we were told that the next few hours would probably be our last with him. Our son was in a deep coma caused by an intracerebral hemorrhage, also called intracranial bleeding. It wasn’t until late in the evening that we were told he had a bleeding disorder, and not for several days that he had severe hemophilia A. A surprise for all, we hadn’t any family history of bleeding disorders of any kind.

That was our introduction to the world of hemophilia.

Todd lived to be 24 years old, and during those years, you would never have known that he had ever experienced anything like that. Subsequent MRIs showed the right front quadrant of his brain was atrophied and dead—yet Todd was an accomplished student, musician, avid cook, and obtained his bachelors in nursing.

I was scared, angry, frustrated, and felt like a failure as a mother when Todd was diagnosed with hemophilia. But one day, I decided to put that energy towards something useful and positive. I found that getting educated, sharing what I learned, and becoming an advocate in the community was right for me. You can’t change the reality—but you can make it better.