First Bruise

Two days ago, Thomas and I were getting ready to go get Ty at the bus stop after school. I put Thomas in the Ergo and as I was doing that, put my hand behind the back of his head like I always do. I felt a little lump there, almost at the base of his skull, right in the middle. At first I described it as the size of a marble but really it was more like a pea. I was rushing to get out of the house so we wouldn't miss the bus and since I had Thomas inward facing in the Ergo, I went and looked in the mirror. There was a little purple bruise right on top of the lump. It was a little bigger than the tip of a pencil eraser.

I called Steve as we were walking up the street. This was the first time we've seen any bruise on Thomas. It worried me that I didn't know where it came from and it worried me even more because it was on his head. We agreed that I would call the doctor as soon as I got back home.

We're lucky to live close to a children's hospital with an excellent hemophilia treatment centre (HTC). I called the clinic and left a slightly panicky message saying if they didn't call me back in a few minutes I would page the hematologist. I don't know if all HTCs work this way but we're able to page the hematologist directly 24 hours a day and they encourage us to do so. So, after waiting about three minutes, I had him paged. He asked me a few questions and I described the lump to him. He told me to keep a close eye on it and if it changed at all or if Thomas behaved differently, to bring him in for factor. Eek. You can read my post about immunizations to learn about my concerns about factor at this point but the bottom line is this: we want him to have his first dose of factor in the absence of a bleed. That puts him at a lower risk of developing an inhibitor.

We did keep a close eye on it all evening. I lined up my mom to look after Ty in the event that we had to go to the hospital. But it didn't get any worse. Thomas acted normal. He fussed when I touched the lump but no more than anyone would if someone was poking at a bruise. Here's what it looked like that evening.

At this point it was already starting to look more red than the purple it was earlier.

Last night when I was putting him in the bath, we folded up a towel to go under his head. The edge of the infant bathtub lined up perfectly with the bruise so I'm quite confident that's where it came from. It makes me feel better to know what caused it and that it's not just random. Today the lump is still there but the bruise is kind of a light brown. It's healing just like I would expect anyone's bruise to heal.

If there's anyone reading this with a kid with severe hemophilia, is this normal? I would have expected worse. When do severe hemophiliac kids become symptomatic? Or maybe this is symptomatic. Maybe a normal kid wouldn't have gotten a bruise from an infant bathtub at all.

Thomas has had his bloodwork done only once, at birth. Steve has been wanting his factor level rechecked for a while and our hematologist has plans to do it in November before we start prophylaxis. I've heard stories of kids who were found to have lower levels than they had at birth so I guess it's possible that his level could be higher than it was. I try to not even think about that. Trust me, I'm not in denial. But I do tend to develop unrealistic expectations about things sometimes. My fear is that when we have the bloodwork done in November and it comes back as <1% again, it will be like getting the diagnosis all over again. I'm trying hard not to expect anything other than <1% but he just seems so normal. Is this still some sort of newborn protective period? Or do all hemo babies do this well in the beginning?