anyone dealing with hemophilia?

1195 Views 4 Replies 3 Participants Last post by jennlindsey, Nov 14, 2005

jennlindsey

Discussion Starter · Nov 10, 2005

hey mamas,

just wondering if anyone here is dealing with a kiddo with hemophilia or with hemophilia carrier status in pregnancy/childbirth. i'm a carrier and am lucky to be dealing with some very cool birth center midwives, but it would be really nice to have someone else dealing with similar issues/concerns to chat with. (the only women in my life -- mom and aunt -- who have dealt with hemophiliac children/carrier status take a *very* medicalized view of things ... sometimes they're a help, but sometimes not.)

thanks!

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USAmma

· #2 · Nov 10, 2005

Hi Jenn, we have a Health and Healing forum where you might find more people with that in common.

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jennlindsey

Discussion Starter · #3 · Nov 11, 2005

Thanks -- so many boards and so many subforums it's hard to know sometimes!

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kraftykathy

· #4 · Nov 13, 2005

my son has von Willebrand's disease which is similiar, though it is usually mild. it great that you found some cool midwives. one thing about bleeding disorders is that the less intervention at birth, the better for you (if you are a symptomatic carrier) and for babe.

i also have von Willebrand's. i had a homebirth with my last baby,though i chose active management for the third stage (we agreed ahead of time that i would have a shot of pitocin after the birth to prevent post partum bleeding. with von Willebrand's, the factor levels go way up in pregnancy and even if babe has von willebrand's, he or she also gets elevated levels at birth. do babes with hemophilia also have raised factor levels at birth?

good luck to you!!!

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jennlindsey

Discussion Starter · #5 · Nov 14, 2005

Hi Kathy -- awesome to hear about your homebirth! I was told years ago that I needed to have a "generous episiotomy" (that actual phrase went on my records -- eek) and serious medical management with any birth since I was a carrier, so I am always glad to see when people are able to have things go smoothly outside the system. We are not going to do any prenatal diagnosis -- probably won't even find out the sex -- though we will go have a chat with our local hematology clinic to be prepared.

I *think* babies with hemophilia do have elevated levels ... my aunt's son was circumcised before they knew he had hemophilia (the thought gives me chills) and he mercifully did not have any complications -- I believe they said it was due to elevated factor levels from mama. (We are not gonna circ so that's a non issue ... though my kiddo will definitely have a vitamin K shot.) My midwives also said they'll run clotting times on me -- my factor levels have always tested low, but I have never had symptoms, had surgery/dental work no prob.

Thanks for your response!

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