Sperm donor passed on sudden death heart defect

SeaSoul · October 2009

Awesome...something else to worry about.

Read about it here.

LisaMarisa · October 2009

Wow, something just like this was just on House this week. He wasnt a sperm donor but he didnt know he had a son.

That is so upsetting.

soccerwife · October 2009

Scary - but, per the article:

"Neither the sperm bank nor the donor were identified. The donor, now 42, had no symptoms of genetic heart disease and no obvious family history when he donated sperm in the early 1990s. His own condition wasn't diagnosed until after a child born through sperm donation was diagnosed."

How was he supposed to know? I feel so bad for the families affected.?

SeaSoul · October 2009

soccerwife:

Scary - but, per the article:

"Neither the sperm bank nor the donor were identified. The donor, now 42, had no symptoms of genetic heart disease and no obvious family history when he donated sperm in the early 1990s. His own condition wasn't diagnosed until after a child born through sperm donation was diagnosed."

How was he supposed to know? I feel so bad for the families affected.

Oh, I know...and there is a positive side to it, in that sperm banks are now testing for heart defects as a result. But it's still unnerving.

hannah&ben · October 2009

While this is really sad for all parties involved there is absolutely no way they can test for every genetic defect that exists... there are thousands.. some with identified genes others without... without an identified genetic mutation you can't test for them...

The "sudden death" heart defects (AKA SADS - Sudden Arrhythmia Death Syndromes - the kind of problems me and my kids have) are only recently having genes identified (like in the past 20 years or so) and new ones are being discovered regularly... when Jack first got diagnosed there were like 8 genetic mutations associated with the syndrome we have now there are more like 12... just in the past 5 years...

My point is... they can be testing for stuff but there will always be things that slip through the cracks.. for donor and non-donor babies alike... it's always sad.. but also rare.

Try not to stress too much...

SeaSoul · October 2009

hannah&ben:

While this is really sad for all parties involved there is absolutely no way they can test for every genetic defect that exists... there are thousands.. some with identified genes others without... without an identified genetic mutation you can't test for them...

The "sudden death" heart defects (AKA SADS - Sudden Arrhythmia Death Syndromes - the kind of problems me and my kids have) are only recently having genes identified (like in the past 20 years or so) and new ones are being discovered regularly... when Jack first got diagnosed there were like 8 genetic mutations associated with the syndrome we have now there are more like 12... just in the past 5 years...

My point is... they can be testing for stuff but there will always be things that slip through the cracks.. for donor and non-donor babies alike... it's always sad.. but also rare.

Try not to stress too much...

Thanks for the add'l info, Hannah...I'll try not to stress.

dejavu · October 2009

i read this yesterday, such a sad story. but as a pp mentioned, the donor was not aware of the condition. it think even one of his own children has it. it would be another story entirely if he had knwn and still donated. i know there is something going on with NECC and a woman who's daughters have a horrible condition that she is trying to get info (medical) on the donor as she choose an anonymous one.

hannah&ben · October 2009

Ugh... Please excuse me for being so rambly... whenever people talk about these kind of heart defects it hits a nerve.. you know?

I also just wanted to add... along the lines of what the article stated... there is no way he could have known... without a family history or obvious symptoms (and sadly, with these kinds of heart defects, often the first "symptom" is sudden death) there wouldn't have been any reason for him to have screening done for this... some of these syndromes can be seen on EKG but a lot of people can go their whole lives without ever needing one... I'm sure he felt horrible when he got diagnosed...

The good news is though, the parents of the child now know, and can provide the necessary medical intervention to help the child live a safer, healthy and long life. The most dangerous aspect of any SADS is not knowing... there are medications and surgical interventions that can make things much much safer for people once diagnosed...

It's horrifying to think about the possibilities in this scenario, I'm sure! But again... it's all relatively rare... and it's not any more likely that your sweet baby inherited some scary genetic defect from the donor than it is for him to have inherited something from you.

Hannah

BTW: LOVE your sig pic... as always Cal is so stinkin' cute!! He looks like such a happy guy too!

s.s.girl · October 2009

My take on it is my DH could have had some mutation that we were on aware of if we would have been able to have children together. The fact that we used a donor?doesn't?increase those odds it's just a very unfortunate development.?

But I do see where you're coming from there are so many unknown variables.?

SeaSoul · October 2009

Hi everyone...I feel the need to explain that I was not faulting the donor in any way! I know he didn't realize he had this defect and I also know, thanks to Hannah, that even if the sperm bank had tested they may not have picked up on it. I was simply saying that it makes me feel nervous. Just like any kind of news like that would. It doesn't take much for this new mom to feel nervous for her kid.

You know?

hannah&ben · October 2009

SeaSoul:
Hi everyone...I feel the need to explain that I was not faulting the donor in any way! I know he didn't realize he had this defect and I also know, thanks to Hannah, that even if the sperm bank had tested they may not have picked up on it. I was simply saying that it makes me feel nervous. Just like any kind of news like that would. It doesn't take much for this new mom to feel nervous for her kid. You know?

I didn't think you were faulting the donor at all! I know this has all got to be incredibly unsettling for you... was just trying to share some info...

It's ok mama!

BRSaugust20 · October 2009

Such a sad story. It is also unfortunate that there isn't a guideline that all clinics need to follow regarding testing for donor sperm / donor egg.

We lost our second egg donor because our clinic found that she carried the Fragile X gene (leading cause for mental retardation and it gets stronger in later generations). She had donated 3 times before at two different clinics who didn't catch this in their genetic screening because not everyone tests for the same things.

Our agency had to call and tell the donor and the other families. We just lost money, I can't imagine being one the donor or the other family getting that call.

TripMomma · October 2009

The trio are DC too, and what scares me more about this is how some banks do not report and share info. I have seen emails from many a mom about how there is no information given or taken when trouble rears it's head. There was no way for this man to have known, but how fast was the bank getting the info out when the very first mom alerted them that their child had a problem. Did they stop selling his samples right away, did they contact all the people who have bought his samples right away. Many banks have not and there are some law suits pending on issues like this around the country.

epphd · October 2009

Chiming in to echo Hanna and others - this is of course something we think about with respect to our egg donor. From what we can tell her family health history is great with no obvious red flags, but medical data on donors is largely self reported. And garbage in=garbage out. It's not to say I suspect donors of lying - I doubt that very, very few do. But anyone using donor gametes runs this risk, and yes - we even run the same risk if we don't use donors. We'll never know the entire genetic background of our spouse, ourselves, OR egg or sperm donors.

So... we do the best that we can. Improvements in genetic testing are being made daily and with luck, no parent will have to face the surprising fact that they or a gamete donor passed on a potentially lethal genetic complication to their child. But I think that's a long way off.

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