Von Willebrands, anyone dealt with it?

[bobandjess99]

Any midwife or nurse or anyone here deal with a Von W mother?? i mentioned to my midwife today that i think my long recovery time at dd's birth might have something to do with me possibly having vonW...my lil bro was diagnosed recently, and they said I have a 50% chance of having it, but haven't been tested.
At dd's birth, i didn't seem to bleed too much, maybe a little, but not a full-blown henorrhage or anything, but i was just so weak for so long, even a month PP i was still fainting if I stood up too quickly, and I bled (heavily, AF style) for a full 8 weeks after the birth.
Protocols, treatments, prevention? The only info i can find is that "your high-risk doctor will know how to treat your condition" blah.

[bryonyvaughn]

What kind of vWD does your brother have?

~BV

[bobandjess99]

I get the technical terms mixed up, but my brother has the very severe kind, I think it is called type 3? I believe that I have the mild form, just by my symptoms.

[zofranland]

i work in a high risk hospital. we give our Von W pts a certain drug through their IV that helps the clotting cascade prior to delivery. I will have to go look up the name of it b/c we dont often have many Von W pts. there are certain bld tests you can have to be diagnosed. in the case of both of the mother wiht Von W they had C/S b/c of other issues.. hope that helped!

[brandybehr]

I have vwD and I have never had any issues with any of my children.

I would recommend that you get an appt with a hemotologist and find out your type.

[Maggi315]

There are different levels, I wouldn't risk out someone with it, but I would want to know what level they had. Obviously, more severe, would not be able to deliver at home.

I think that it is much more common than we know. How many women have heavy bleeding and are dismissed by their docs.

In fact, I would go as far to say that as part of the prenatal lab work, all women should be screened, it could save lots of time and money in the end.

[iluvmybabies]

I know that this doesn't really belong here but I was hoping someone might be able to answer it. We're not sure if my dd has Von Willebraun's but my dd ped. mentioned that she might have it- we are going to have her checked at her 12 mo. visit. She has, since birth, had petechia or little broken blood vessels on her bum. They come and go in different spots, but are always there. They seem to be worse when she poops, but that doesn't really make any sense does it? Anyway, I would be very grateful if anyone has any experience with this- has anyone witnessed this on a baby with Von W. Feel free to pm me. And sorry for hijacking the thread!

[bobandjess99]

Originally Posted by zofranland

i work in a high risk hospital. we give our Von W pts a certain drug through their IV that helps the clotting cascade prior to delivery. I will have to go look up the name of it b/c we dont often have many Von W pts. there are certain bld tests you can have to be diagnosed. in the case of both of the mother wiht Von W they had C/S b/c of other issues.. hope that helped!

My midwife said she was not familiar with any drugs to use dring the birth, but said she would look it up before the next visit. I asked her about maybe getting it at home if that was possible. With an estimated 1% of all people having it, obviously a lot of women don't even know, and even fewer seem to be actively treated.....

[bobandjess99]

Originally Posted by Maggi315

There are different levels, I wouldn't risk out someone with it, but I would want to know what level they had. Obviously, more severe, would not be able to deliver at home.

I think that it is much more common than we know. How many women have heavy bleeding and are dismissed by their docs.

In fact, I would go as far to say that as part of the prenatal lab work, all women should be screened, it could save lots of time and money in the end.

Ya, what i have read is that 1% of everyone has it, but the vast majority have the mild kind, and so are usually not diagnosed. going by the description of the symptoms, I'm sure if I have it, it is type 1. Definitely not type 3 like my brother has. I mean, I clearly did not bleed to death when i had dd. I also think that just the extreme amount of tearing i had certainly couldn't have been good, I'm sure there was just a lot of bleeding going on from so many sources, not just "normal" uterine cleansing postpartum, but literally feet of tissue that had been ripped apart. (My vagina was basically shredded, tears everywhere, in every direction, internal and external)

It's just so hard to get information sometimes, and I swear if I read "your doctor will know how to treat your condition" one more time I'm going to scream.

[bobandjess99]

Originally Posted by brandybehr

I have vwD and I have never had any issues with any of my children.

I would recommend that you get an appt with a hemotologist and find out your type.

Nice to know you have never had issues, I thin a lot of women probably don't. With no insurance, an appt with a hem is pretty much out...so is any health care that isn't precipitated by the possibility of one of us dying RIGHT NOW unless we get it. It costs my parents thousands of dollars every year out of their pocket to pay for visits for my brother, but the state stepped in and told them they HAVE to take him or they'll take my brother away for neglect.

[pamamidwife]

I had a client with Type II and everything was pretty normal.

[brandybehr]

Originally Posted by bobandjess99

Nice to know you have never had issues, I thin a lot of women probably don't. With no insurance, an appt with a hem is pretty much out...so is any health care that isn't precipitated by the possibility of one of us dying RIGHT NOW unless we get it. It costs my parents thousands of dollars every year out of their pocket to pay for visits for my brother, but the state stepped in and told them they HAVE to take him or they'll take my brother away for neglect.

Oh, wow, they threatened they would take him away! That is horrible.

I am in Canada, I forget that people don't have healthcare like we do here.

My Grandfather has vwD, as does my mother and 2 of her 4 sisters, none of her 4 brothers have it. At least one of my cousins has it. I have it, my brother does, my one child is confirmed.

To test it is not as easy at it seems. If the patient is nervous, her levels go up (to a normal or closer to normal level), exercise raises it, even walking up a flight of stairs. Fear raises it, crying makes the test basically false (hence, why 3 of my kids are NOT confirmed)...

For us, I have it, I have had the DDAVP trial and a Rx for DDAVP as well as something else in case I have heavy periods (forget what it is called and nursing does well at keeping AF away). My children are treated as though they have it until they get 2 negatives as adults. In puberty, with onset of menstruation, the girls will possibly come up as having it, so far one girl has it.

I have a book on it all that was given to me by the hemotologist I see. I see him once a year now, for a "check up". vwD seems to fascinate the Dr, I think he is weird, but to be an hemotologist, maybe you have to be... My children go once a year to the pediatric hemotologist for a check as well.

But, all in all, it is not an issue (for us). I have had 2 homebirths and never needed anything, I have had 2 hospital births, first with an episiotomy, and again, didn't need anything.

[bryonyvaughn]

Originally Posted by bobandjess99

I get the technical terms mixed up, but my brother has the very severe kind, I think it is called type 3? I believe that I have the mild form, just by my symptoms.

Oooh, yah. Type 3 is the worst. Type 3 has two vWD genes while Type 1 has only one vWD gene. Platelet vW and all the Type 2 vWD are their own unique diseases.

Am I correct in assuming you and your brother share both the same biological mother and biological father? Am I correct in assuming your little brother is an adult?

The reason I ask is if he got through to adulthood before being diagnosed with Type 3 vWD, I'd assume they weren't looking for it earlier because neither of your parents have Type3vWD. Assuming (once again) that is indeed the case both your parents would have to have Type1vWD. That would give any individual child of theirs a 25% chance of having Type3, a 50% chance of having Type1, and a 25% chance of being vWD-free.

Do you know your ABO blood types of yourself, your brother, and/or your parents? The reason I ask is because type-Os naturally have the least amount of clotting factor. Type3vWD is diagnosed across the ABO blood types in proportion to their distribution across the population. As Type1-vWD is diagnosed in folks with blood type O out of proportion to their distribution in the population, it's reasonable to assume it's because it's under-diagnosed in other blood types due to their milder symptoms being less likely to attract a clinician's attention. As type-As generally have the seepiest blood vessels, those with Type3vWD can have more day-to-day, non-injury/-surgery related vWD complications than Os, Bs, and ABs. Knowing your family's ABO blood types would fuel my speculation... which honestly wouldn't make one whit of difference in the phenotypes of any member of your family.

On a practical note, if you and your brother share both biological parents, you have a 75% chance of having some sort of vWD. If I were in your situation I'd get tested. If you're vWD-free you can live without an anxiety cloud of bleeding issues hanging over your head. If you have Type3 you decide if you want clotting factors (a human blood product) before surgery. If you have Type1 you can decide if you want to take a drug that releases VW-factor stored in some of your cells into your bloodstream before surgery. It wouldn't work in time to affect an emergency c/s (which typically involves greater blood loss than vaginal births) but would put you in the driver's seat about decisions for non-emergency surgeries, dental work, and let the doctors know what to watch for if you have a traumatic injury of any kind.

To answer your original question, no, I haven't had a client w/ vWD but (as you've probably noticed) I'm a bit of a blood type influenced diseases junkie.

I wish you peace and clarity in the decisions you face.

Take gentle care,
BV

[Snork]

I have vWD but havent been tested to clarify which type. However I am convinced its minor. I have two sons with moderate vWD, the first was picked up when he bit his lip as a baby and heamorrhaged so badly he was transfused and required microsurgery. He has had a few issues like this since. Its interesting that our GP missed that his cord bleeding for 12 weeks post birth and needing silver nitrate 5 times is a classic sign of a bleeding disorder. I didnt know it either.

I have homebirths myself but have never PPHd. I did bleed heavily once after an incomplete miscarriage but refused transfusion. I have severe menorrhagia, bruise easily and with minor abrasions or cuts requiring stitches have been asked many times by ER docs if I have a bleeding disorder. Apparently two children with vWD is a positive diagnosis in itself, but I dont see the point in classifying it right now.

Being aware of it, I maintain my haemoglobin and iron stores as much as I can and try to remain in good health during pregnancy to reduce my chances of bleeding or reacting badly to a bleed. I also refuse all intervention so that I am less likely to PPH. So far so good.

[bryonyvaughn]

Sorry about big irrelevancies of my post, Jess. I just reread the thread and saw your brother is a child and you don't have insurance.

If you want insurance, you might be able to qualify for Medicaid for the duration of your pregnancy + 3 months. Receiving Medicaid does not obligate you to receive any prenatal or birth care through the insurance. I've gotten Medicaid while UPing/UCing for the chiropractic and vision benefits.

It takes a blood draw to diagnose vWD. If you wouldn't want to deal with a hematologist, could your MW's backup order the test? That way you'd just show up at the lab and pay for the test only. They normally do a batter of tests when bleeding disorders are suspected but, since your brother has type3, it's reasonable to only test for type1 & 3 vWD.

Type3vWD (lack of vWD antigen) can easily be diagnosed at anytime. The bad news because vW antigen naturally increases during pregnancy, it's harder to diagnose Type1vWD (decreased vWD antigen) during pregnancy. The good news is pregnancy mediates the impact of Type1vWD.

~BV

[bobandjess99]

Originally Posted by bryonyvaughn

Oooh, yah. Type 3 is the worst. Type 3 has two vWD genes while Type 1 has only one vWD gene. Platelet vW and all the Type 2 vWD are their own unique diseases.

Am I correct in assuming you and your brother share both the same biological mother and biological father? Am I correct in assuming your little brother is an adult?

The reason I ask is if he got through to adulthood before being diagnosed with Type 3 vWD, I'd assume they weren't looking for it earlier because neither of your parents have Type3vWD. Assuming (once again) that is indeed the case both your parents would have to have Type1vWD. That would give any individual child of theirs a 25% chance of having Type3, a 50% chance of having Type1, and a 25% chance of being vWD-free.

Do you know your ABO blood types of yourself, your brother, and/or your parents? The reason I ask is because type-Os naturally have the least amount of clotting factor. Type3vWD is diagnosed across the ABO blood types in proportion to their distribution across the population. As Type1-vWD is diagnosed in folks with blood type O out of proportion to their distribution in the population, it's reasonable to assume it's because it's under-diagnosed in other blood types due to their milder symptoms being less likely to attract a clinician's attention. As type-As generally have the seepiest blood vessels, those with Type3vWD can have more day-to-day, non-injury/-surgery related vWD complications than Os, Bs, and ABs. Knowing your family's ABO blood types would fuel my speculation... which honestly wouldn't make one whit of difference in the phenotypes of any member of your family.

On a practical note, if you and your brother share both biological parents, you have a 75% chance of having some sort of vWD. If I were in your situation I'd get tested. If you're vWD-free you can live without an anxiety cloud of bleeding issues hanging over your head. If you have Type3 you decide if you want clotting factors (a human blood product) before surgery. If you have Type1 you can decide if you want to take a drug that releases VW-factor stored in some of your cells into your bloodstream before surgery. It wouldn't work in time to affect an emergency c/s (which typically involves greater blood loss than vaginal births) but would put you in the driver's seat about decisions for non-emergency surgeries, dental work, and let the doctors know what to watch for if you have a traumatic injury of any kind.

To answer your original question, no, I haven't had a client w/ vWD but (as you've probably noticed) I'm a bit of a blood type influenced diseases junkie.

I wish you peace and clarity in the decisions you face.

Take gentle care,
BV

Yes, my bro and i are from the same bio parents. He is now 16, was diagnosed a few years ago. I do NOT know his blood type, but mine is B+.
my mom does have it, and my father must also, but since he has been on coumadin since he was a child due to heart problems(he currently has 3 artificial heart valves), he of course has always had bleeding issues so vWD was not something they considered, they always attributed his bleeding to the coumadin, of course. I do not believe he has been tested to determine exactly what he has though. I am certain I do not have type 3, i simply do not have the level of bleeding required, i have had a few minor surgeries and other injuries where i certainly would have had serious complications if I had type 3, plus the symptoms just don't fit for me. I do want you to know you brought back scary memories of genetics class for me.....I'll probably be chased by Punnett's squares in my dreams tonight....LOL!


We do not qualify for Medicaid, so that's not an option, unfortunately, because our lovely state uses GROSS income (with NO deductions)to calculate eligibility, and the $7000+ we pay in child support to dh's ex is counted against us even though we never see it, so on paper, we seem much less poor than we are (Sadly, even despite this, we're just barely over the maximum limit...)

For now, I just live as if I have VWD type 1, and don't sweat it for the most part. I was just hoping to prevent the long, drawn-out, exhausted recovery phase i had postpartum last time...I honestly can't even know for sure it had anything to do with vWD or what? It was just something I was trying to gather more info about.

[bryonyvaughn]

Originally Posted by bobandjess99

Yes, my bro and i are from the same bio parents. He is now 16, was diagnosed a few years ago. I do NOT know his blood type, but mine is B+.

Well the good news is type B is the best type of blood for folks with vWD. Your blood vessels close tighter than the type As (blood vessel walls aren't solid like garden hoses but can open and close more like mini-blinds) and you naturally have more clotting factors than type Os.

For now, I just live as if I have VWD type 1, and don't sweat it for the most part. I was just hoping to prevent the long, drawn-out, exhausted recovery phase i had postpartum last time...I honestly can't even know for sure it had anything to do with vWD or what? It was just something I was trying to gather more info about.

Well one cool thing about vWD-1 is it's mild AND episiotomies and c/s would be contraindicated under all but the most urgent circumstances. Now if we could only get birth attendants to treat all women that way

It sounds like you have both peace and a plan.

Take gentle care,
BV

[zofranland]

[QUOTE=zofranland;8376134]we give our Von W pts a certain drug through their IV that helps the clotting cascade prior to delivery. QUOTE]


DDAVP... i am pretty sure that is the abbrieviation for the IV drug given... the MD said he would have to look up the spelling of the drug and get back to me!

[bobandjess99]

Originally Posted by bryonyvaughn

Well one cool thing about vWD-1 is it's mild AND episiotomies and c/s would be contraindicated under all but the most urgent circumstances. Now if we could only get birth attendants to treat all women that way

It sounds like you have both peace and a plan.

Take gentle care,
BV

It's funny you say this, because my lil sis (also with type 1)just had an elective primary C/S and she has had so many complications from bleeding and the incision site...but of course, her doc had told her "everything would be fine" and it would be "so much better than a vaginal delivery". Blech.

I was also reading that apprently, epidurals are considered contraindicated, because of the risk of bleeding into the spinal column?

so...let's see...I shouldn't have an epidural, episiotomy, or C/S......but yet I should rush to the hospital because that's the only safe place for me to birth!!!! uh-huh. *SIGH* sometimes, all you can do is laugh...in a sad, sad way.

[birthgreeter]

I have experience with this. PM/e-mail me if you want more information.