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Thursday, July 9, 2009


The day we brought Ethan home from the hospital (2/21/08) I noticed that his heel stick site was still bloody. He was pricked twice in the same foot so the wounds were very close together. I thought the bleeding was odd, but I didn't want to overreact either. As I pulled off the old bandaid and put on a new one, I casually mentioned to John that the bright-red bandaid might indicate that...

"Ethan could have hemophilia or something."

I quoted EXACTLY what I said that day and those words will haunt me for the rest of my life. Less than 24 hours later, I desperately wished that I heeded my intuition. I had a premonition, but I completely ignored it. I learned later that John had no idea what hemophilia was when I mentioned it to him that day. Upon learning of Ethan's diagnosis, I immediately thought of the casual conversation I had with John the day before. Oh how I'll never forget that horrible moment in the NICU! I felt awful when I learned of his diagnosis.

"Hemophilia" echoed in my head.

I mentioned the bandaid (the faintly-bloodied bandaid that you can see in the picture above) at Ethan's well-baby check and thought nothing of it afterward. (His appointment was the day before he had the bleed.) I remember rushing home from his appointment that day because John's cousin was waiting at our house to meet Ethan. I was so excited to spend the rest of my life with my boy. Oh, it was such a beautiful, sunny day! Never in a million years would I have guessed that damn bandaid spoke mountains of information.

My euphoria was shattered the very next day.

Now that I look back on everything, I honestly feel like I should have pushed more at his appointment. I don't blame the doctor because the bleeding heel stick was such an insignificant thing compared to the chordee. We focused more on his chordee during his appointment. But geez, it's been over a year and I'm still kicking myself in the head. The older boys had heel sticks before and they didn't bleed like Ethan did. They also didn't develop petechiae on their noses from crying. Nevertheless, I surmise that the doctor didn't order coagulation labs for the same reason I didn't push the issue.

A bloody bandaid and two tiny dots on a cute little nose are insignificant things for people with no prior history of bleeding disorders.

Would you have noticed anything other than a cute face if you saw this?

But that everything has been said and done, I can't help but feel like Ethan would still be alive if I just pursued my inution. Ethan's doctor (now Niki's hematologist) was so gentle when she spoke with us about his bleeding disorder. I remember that conversation well. I cursed myself and that blasted conversation! Over a year later and I'm still disturbed by my unforeseen revelation.

I wonder what would have happened if only I paid attention to the sign?

Maybe a diagnosis and intervention could have been made before the head bleed, ya know? If only I wasn't so f*cking oblivious to the sign in front of me! I kept that bandaid as a reminder to myself to NEVER ignore my instincts. By the time the significance of that tiny bandaid came to light, it was too late. Ethan's bleed happened too fast, too unexpected. His hematologist told us that his bleed was spontaneous and occured all at once. The damage was done in a matter of seconds, but the bleeding in my heart will last forever. There was nothing anyone could do to stop his fate.

I blame me.

Even though I know his passing couldn't have been avoided, I suffer from mother's guilt by default. I know I shouldn't be so hard on myself and I realize that it's not my fault that Ethan passed away. This was God's plan after all. There's no way that I could have possibly known or stopped it from happening the way it did. We already had two healthy children and NO family history of Factor VII Deficiency in either of our families. Even though I knew what hemophilia was, I still had no clue about the pathophysiology of hemophilia. I knew nothing about the risk of spontaneous bleeding in the central nervous system. The sign was there, but I simply wasn't meant to read it.

I've never looked at a bandaid the same way again.

1 comment:

  1. I know a few fVII families - We're a fVIII family. It's not the same but I can relate. Contact me if you want to chat.