A Head Bleed that Went Undetected

When our son Leland was born, we got the diagnosis of hemophilia immediately. Because of my family history, we knew that if we had a baby boy, there was a 50/50 chance he’d have hemophilia, but it was never an issue. My father had severe hemophilia A and although he was proactive in treating it, he didn’t make a big deal out of it either.

After Leland’s birth, we had a “honeymoon” period. Leland didn’t have any bleeds until he was 15 months old. We were happy about that, but a little apprehensive, kind of waiting for the other shoe to drop: When is he going to have that first bleed? Am I going to recognize it? There was a lot of uncertainty that only went away when we gained experience.

In our first experience with a bleed, we were thrown right into the fire. One day, when Leland was 15 months old, he had a low-grade temperature and was very lethargic. We just thought he was coming down with a cold or something. It didn’t occur to us that it might be a hemophilia issue. I called the pediatrician, who suggested we give him Tylenol and keep an eye on him. Later in the day, Leland’s right hand started twitching. Not having experienced bleeds, I didn’t know if this meant he was having a bleed in his hand. We went back and forth over the phone with the pediatrician who saw no cause for alarm and said to just keep an eye on him.

I called our HTC about the twitching hand and that evening a visiting nurse came out to assess the situation and infuse Leland. By that time, Leland was lethargic and staring off into space. While the nurse was there, he vomited. Even with all those symptoms, the nurse, who was very experienced and well educated in hemophilia, didn’t make the connection. She infused him and only said she didn’t think he was having a bleed in his hand and that I should check in with our HTC in the morning.

Leland slept through the night. The next morning, there was no change. I called the pediatrician and he told us to go to the children’s hospital. I was asked by several members of the ER staff to repeat our “story” and Leland’s symptoms: he was very lethargic, had a low-grade temperature, and had vomited just that one time. By now, the hand twitching had basically stopped; I wondered if they believed me when I described it. As far as I knew he had not at any time hit his head. The doctors kept examining his head, but there were no signs of outside trauma. So, despite Leland having typical symptoms of intracranial bleeding, we were in the ER for several hours before hospital personnel did a CT scan.

The CT scan showed visible swelling in his brain. His right hand had been twitching because the swelling was on the left side of his brain. He was immediately placed in intensive care. At this point, he was past lethargic—he had become unconscious.

They put Leland on a continuous IV infusion of huge doses of factor VIII. Thank God they were able to get the head bleed under control with factor VIII, but they also noticed that his body was not maintaining the levels of factor that it should.

A month before this, we had been at the clinic for routine testing, including inhibitor screening. Leland did not have an inhibitor at that time. But now we all realized—he was developing or had developed an inhibitor since then.

Leland spent three weeks in Children’s Hospital. The first week was mostly addressing the intracranial bleeding and the rest of the time we were dealing with the new inhibitor diagnosis.

Head bleeds are rare and spontaneous head bleeds are rarer still. We gradually understood that Leland had most likely had a spontaneous head bleed. In hindsight, I know his symptoms were all classic signs of a head bleed, but at that time I didn’t know anything about it. I believe the hospital we took Leland to is one of the best in the country. Yet, even after they saw all the symptoms, they didn’t put two and two together for several hours.

Based on our experience, if someone were to present with the same symptoms that Leland had—lethargy, vomiting, low fever and, most importantly, the twitching hand—my advice to them would be to contact their HTC immediately and be proactive in asking if a CT scan might be warranted. Don’t assume that you should be looking for a bump on the head to explain the symptoms. I don’t mean to suggest that you jump to terrible conclusions every time your child throws up, but I do feel it’s very important for parents to be familiar with the symptoms of intracranial bleeding and be ready to advocate for their child with medical professionals—even the best can make mistakes or be slow to act.