Friday, February 12, 2010

Your Child Has Hemophlia!

I will never forget the day those words were spoken to me! All three times!

I have three sons with severe hemophilia A. With no family history this was quite A shock to us! Our HTC provided us with a wealth of information. We also found wonderful resources at our local hemophilia chapter as well as the National Hemophilia Foundation. One thing that helped me was being able to talk to other moms who had kids with hemophilia. However 26 years ago that was a bit of a challenge! I am thrilled to be part of Hemophilia Moms so I can share my experiences with all of you!

I was so frustrated all those years ago when no one could answer a question that I felt was pretty straight forwar. " How big is a bruise before it is a bleed?" I always got the same answer..."you will know!" Now how was I going to know? I had never seen a "bleed"! I barely knew what hemophilia was! However, when my son had his first bleed....I knew it! When he had his first spontanious bleed....I knew! As mothers we need to trust ourselves. Take advatage of all the resources that are available! Twenty six years ago I would have loved to be able to talk to other moms in my shoes with the click of a mouse!

How did you feel when your son was diagnoised? How did you know your child had a bleed?

Make it a great day!


M.Kay said...
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M.Kay said...

I'd like to hear what other moms do for medical alerts. Do your kids wear them 24/7? When did you start making them wear it? For those with older children, how do they feel about wearing it? Do they prefer necklace, bracelet or on the ankle? Did you put one on the car seat when they were little? And have any of you ever had an incident were the medical alert saved a life or even been necessary?

Sean's Mom - 2 1/2 SevereHemoB

Brenda Antolik said...

We are having our informational session with his doctors tomorrow. I'm sad and nervous.

Lori said...


I will be thinking of you and your family tomorrow! Hemophilia has just become one of the many things that makes your son who he is. You know how to get ahold of me!

Thinking of you!

Nika, Travis, Ayda and Zander said...

I have a son who is 9 months old with severe factor VIII deficiency. My dad had hemophilia so it wasn't a shock when I found out. It didn't change the fact that I was scared and a little overwhelmed. I related to the post when people say, "you will know when your child has a bleed" thankfully my son hasn't but I am always on edge wondering when that first time will be. To answer M.Kay's question, my son wears his medical alert bracelet and has for a coupld of months. I have a nephew who is 8 never takes his off and it is just there, never been an issue.

M.Kay said...

I don't know how many of you hemo moms have iPhones but you should check this out if you do. A kid with Hemophilia is putting together an app called
"Hemolog" and it looks like it might be a pretty neat thing to have.

Brenda Antolik said...

Nathanial had his first bleed yesterday-- well, since he's been diagnosed. He told us "boo boo, bleedin" and pointed to his right side which had a warm lump about half the size of an apple. We took him to the ER on our hematologist's recommendation and he got his first infusion with no trouble at all.

Kathy said...

My son was diagnosed with a "blood abnormality" about 2 days after birth when we circumsized him. It was labor day weekend so blood tests wouldn't come back for a couple of days. The doctor said "all we know is that there is something wrong. His blood is not clotting. He needs an immediate blood transfusion, so I need you to sign a consent" What a way to find out! There is no history in my family and I was alone in my room when they told me. I was a mess! His next bleed was in 2 months. I knew because his right wrist was swollen and he couldn't move his arm. He would scream at the slightest touch. I'm so glad that I knew what was going on, though it didn't make it any easier. It's been tough.

Amy said...
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e. said...

I have a son who is 7 months old (cousin of Zander who is referenced above). My sister, (his mom) mentioned that we have a family history of hemophilia, so we were prepared for this diagnosis... although we have 2 other sons that did not inherit this gene, so our fingers were crossed.

Our son wears his medicalert all the time. It is on his ankle and it doesn't seem to bother him at all.

My thoughts on the "when will I know" thing is... I might know, I might not, but one bleed does not a hemo make. I have confidence that the longer we live with this condition, the better we will get at managing it.

Mostly I just act confident and tell myself "This is not scary. I can totally do this" over and over until I believe it.