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Unsettling article about donor sperm.  

post #1 of 14
Thread Starter 
A gal on an infertility forum posted this article...it's worth the read

http://www.self.com/magazine/article...or_single_page

My 2 cents: It's definitely a risk we'll all be taking...but when I read this article, I'm not surprised that rare genetic diseases occasionally show up with donor sperm, since any of us could have a rare disease in our own genes that simply hasn't shown up yet or had a child live long enough to yeild a diagnosis... for example, in my own family, my grandmother was diagnosed with Huntington's disease, a rare and devastating disease that affects one's body, mind and mood very quickly at middle age. This disease is dominant, meaning you don't need two parents to have the disease show up in a child, it's a 50-50 chance. Luckily, my mother tested negative, meaning me and my siblings are ok. But I think that this disease has been in my family likely for generations, and no one knew until a few years ago.
So, again, rare diseases showing up in donors...I figure the odds of it happening are just as good, if not LESS, than the odds associated with any male partner we might have in our lives (if applicable )

What does bother me is the fact that illnesses were being reported and the banks didn't pull the donor's units off the shelves and notify all people using/who have used that donor. That crosses the line. Luckily, the only listed two banks that did this. I for one am not and wouldn't use either one after reading this.
post #2 of 14
Two of the moms in that article are/were actually members here. They went through HELL trying to figure out what was wrong with their Ds. The two sperm banks are ones we didn't use. It is scary, however one never knows what will happen.
post #3 of 14
I take that all with a grain of salt. There is no way to know if the donor you choose will carry a genetic recessive or dominant gene that YOU may also carry which in turn can produces affects on the child. I do find it appauling that once these issues are present that there isnt some kind of disclaimer to future couples buying a sperm with known siblings with problems. Genetics we cant help but lying we can.
post #4 of 14
Thats just 2 banks with problems, I know NECC is in litigation for knowingly selling sperm from a donor that has ectodermal dysplasia and 5-6 children were born with a severe form of it over several years and despite the parents reporting it they continued to claim all offspring were healthy and sold more. NW Andrology tried covering up there donors with genetic defects at first and I raised a stink, they now publically post reported issues in offspring. I think the only one I haven't heard of problems with is Midwest, they've only had 1 problem which was a baby born with Downs and she discourages use of the donor just in case but she seems very open about things. My daughter was born with genetic issues that are autosomal dominant (passed directly from parent to child, no carrier status, you either have it or you don't) that we believe came from the donor.
post #5 of 14

Necc

hey could you provide any more info about that NECC case, that's the bank we've been using when we can't get to our known donor...
post #6 of 14
Quote:
Originally Posted by snoopy13 View Post
hey could you provide any more info about that NECC case, that's the bank we've been using when we can't get to our known donor...
Just join the DSR yahoogroups, she's very vocal about it.
post #7 of 14

Necc???!!!!???

Quote:
Originally Posted by Satori View Post
Just join the DSR yahoogroups, she's very vocal about it.
Thank you Satori.

I just read all the posts regarding NECC on the donor sibling registry discussion yahoogroups list and it is really disturbing!

In addition to them continuing to sell the sperm that is causing a genetic illness among recipients' children in this particular case, they also have been found to:
1) allow donors to lie on things like appearance, height, etc
2) change identity release donors to NON identity release after the fact
and other nasty business.

i have 2 vials of IUI on hold from an identity release donor at NECC right now, as we had it as back up for my first try in November, because our known donor's girlfriend is pregnant and was having premature contractions.

This month we worked with our known donor and i'm in the TWW.

but next month we certainly can't use him as he will have a 1 week old newborn!

I am appalled at what i am reading about NECC, yet we have paid for this sperm!

I am sad and confused. any advice??

i feel foolish for not looking into them more. But we have wanted to work with them because it's only 1 hour away so we pick it up and save shipping fees. we used them 3 times with my partner before switching to me.

the woman who is our contact there is a lesbian and was very helpful, it seemed at the time -- for example she did a "photo match" based on my photo to help us narrow down between our 3 top pics to find someone who looked most like me (since my partner was the first one trying to conceive.)

JD
post #8 of 14
JD,

I would search and see if there are any other offspring from this donor already and see if any of them have problems, but often times and this has been my experience that by the time children are born the donor is sold out. Knowing what I know now I would have a very hard time using a bank again if I wanted another child.
post #9 of 14
Quote:
I'm not surprised that rare genetic diseases occasionally show up with donor sperm, since any of us could have a rare disease in our own genes that simply hasn't shown up yet or had a child live long enough to yeild a diagnosis...
I would find it VERY hard to believe that the genetic issues in the case of donor 1084 has anything to do with the bio mothers because, if it did, then one would think that the disorders these kids have would be far more frequent in the general population, than they are. If the genetic problem lies with the bio moms, then it is a pretty amazing coincidence, because almost all kids born of this donor have some degree of the same medical problems/allergies, etc. And FYI, since this article came out, more children conceived with 1084 have been born and faced similar issues. The blame seems to lie solely on the donor for not disclosing his true medical background (unless he honestly didn't know about it), but perhaps even moreso on the bank who denied that there was a problem and continued to sell this donor's sperm despite numerous reports about his offspring's severe medical problems.
post #10 of 14

xytex

FYI,
Our donor had a child with a serious birth defect born after we conceived our first child. The birth defect is not necessarily from the donor, but is a possibility.
We were not notified personally, but when we purchased additional vials to conceive our second child, we were required to sign a waiver stating that we were aware of the condition.
Chance
post #11 of 14
Quote:
Originally Posted by Chancita View Post
FYI,
Our donor had a child with a serious birth defect born after we conceived our first child. The birth defect is not necessarily from the donor, but is a possibility.
We were not notified personally, but when we purchased additional vials to conceive our second child, we were required to sign a waiver stating that we were aware of the condition.
Chance

and yet you still used the donor? I really can't wrap my brain around that line of thinking... that people know the risk is higher and choose to take the gamble anyway. It truly boggles my mind.
post #12 of 14
My son is one of the children mentioned. It's not the health that upsets me... donor sperm (conception in general) is a crapshoot. But the constant stonewalling and lies is what upsets me. And since that article came out, I've been in contact with 5 or 6 (have to do the math) other kids, including parents who were using it for a second child and were lied to AGAIN, even after the restriction. And it didn't get restricted until I sent a reporter to their doorstep... but I've seen the "disclaimer" and the informed consent it offers is bogus. "Some children have exhibited eczema and minor food allergies, which are conditions present in the general population." I don't know the exact words (though I have a copy), but it's along those lines.

That said... we're doing it again, and NOT with Fairfax. Most people I know have used fairfax, and none have had a problem... but we have, and it's not worth it. We chose to use another father (which was extremely difficult, even though it was a no brainer), and hopefully everything will turn out fine...

And no, it's not the mothers. Unless all the mothers carry some super rare immune defect that no one can identify.
post #13 of 14
Thread Starter 
Quote:
Originally Posted by kands View Post
I would find it VERY hard to believe that the genetic issues in the case of donor 1084 has anything to do with the bio mothers because, if it did, then one would think that the disorders these kids have would be far more frequent in the general population, than they are. If the genetic problem lies with the bio moms, then it is a pretty amazing coincidence, because almost all kids born of this donor have some degree of the same medical problems/allergies, etc. And FYI, since this article came out, more children conceived with 1084 have been born and faced similar issues. The blame seems to lie solely on the donor for not disclosing his true medical background (unless he honestly didn't know about it), but perhaps even moreso on the bank who denied that there was a problem and continued to sell this donor's sperm despite numerous reports about his offspring's severe medical problems.
Just to clarify, I wasn't saying that in this particular case that all the mothers had the same genetic issues, it's obvious where the blame lies. I was just pointing out that in general, it's possible to be a carrier of a genetic disease (as either a biomom or a donor) and not know it, and there aren't enough tests in the world to rule them all out. It's a risk ANYone conceiving is taking, whether you're using donor sperm or not.
post #14 of 14

Yes, we still chose to use the donor

Of course it could go without saying that we all choose our donors for personal reasons and that we all have different criteria. In our case, the genetic defect is *extremely* rare and not difinitively tied to the donor. I elected to have an amnio to determine whether or not the second baby would be affected. Interestingly, in going through genetic counseling, there were several potential defects that could have popped up from my own gene pool that the baby was also tested for (including fragile X, which used to be looked at as simply mild retardation).

There is risk everywhere when you are conceiving children, most of which cannot be predicted at all.
Chance
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Mothering › Forums › Parenting › Life as a Parent › Queer Parenting › Unsettling article about donor sperm.