Donor eggs, autism, birth defects...thoughts?

Donor eggs, autism, birth defects...thoughts?

Randall71
Randall71

March 22nd, 2011, 2:58 am #1

Hi. Before I start, I want to say that I do not intend to offend anyone. I know that children with the issues I mention below are often gifts to their families. What I doubt most is my ability to manage such challenges.

For those who have used an anonymous donor, are you worried about the donor's history (ie, what the truth really is)? I know agencies and clinics say they screen, but really, if they don't, there's no consequence for not doing due dilligence. And they don't (arguably can't) investigate the donors any more than blood tests and interviews.

This journey has certainly frightened me (opened my eyes to things I hadn't thought of), pervasive developmental disorders and autism scare me most (for now -- I'm sure lots of other things will come to scare me soon). I'm also aware that science doesn't really know why autism occurs, so can't say it's an inherited trait either. That said, I've seen articles that say the IVF process itself might contribute.

FWIW, my neighbor and her partner have two sons from an anonymous sperm donor. Both sons are autistic, while she and her partner have no history of autism in either of their families.

Thoughts? Does anyone know of a more reputable agency or clinic than another?

Has anyone heard of birth defect/developmental disorder tracking in children conceived by DE?
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demomone
demomone

March 22nd, 2011, 3:37 am #2

is a good one and I am sure one that has crossed many of our minds.

I cannot answer for other's and yes, I have read about women who have used DE/DS who do have had children with issues. For me, it was very important to use a clinic that verified all of the donors info(well, as much as possible). There is no screen for autism, as you know. There are screens for other familial genetic issues. One would have to use a reliable and trustworthy agency or clinic to assure a good screening process. The other issue that was important for me was the psychological screening and I did request and pay extra for some personality tests to determine a mental disorder or not. I actually had it done twice on my donor..I used her for two cycles. It was well worth my peace of mind..You may also want to use an older donor, as we did..that also can rule out some issues depending on how far she has gone academically or in her profession. We also were able to verify her education history through a third party. Sounds crazy how much we went through but this was important to us as we have a load of "issues" with our family members.
In the end, DE was our only option and I thank G-d daily for this dear, dear gift..and precious, very loved child.
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Joined: September 6th, 2007, 1:40 am

March 22nd, 2011, 3:38 am #3

So it's hard to screen for.

I really don't know if your odds are worse with DE than otherwise. I guess that's how I look at it.

I was googling around and it looks the issue is not failure to screen but the drugs used. Possibly...since it is a relationship having to do with IVF, not DE, as far as I can tell.

It seems to increase the risk but not by a huge amount.

It may be better with DE because the older mothers have an enhanced risk. So we would not have older eggs. But that's just speculative.

I had some evolutionary questions about ICSI myself and this is also an issue. There is no screening for weak sperm with ICSI.

I don't know--my odds with my own eggs of a Down's baby are really high at this point and I'd cycle with my own eggs and not terminate. So I guess that has an effect on my decisions. I'm already at risk with my own eggs. Whatever I do, I can't totally win so this is still a good option.
Last edited by arive on March 22nd, 2011, 6:30 am, edited 1 time in total.
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demomone
demomone

March 22nd, 2011, 3:41 am #4

is a good one and I am sure one that has crossed many of our minds.

I cannot answer for other's and yes, I have read about women who have used DE/DS who do have had children with issues. For me, it was very important to use a clinic that verified all of the donors info(well, as much as possible). There is no screen for autism, as you know. There are screens for other familial genetic issues. One would have to use a reliable and trustworthy agency or clinic to assure a good screening process. The other issue that was important for me was the psychological screening and I did request and pay extra for some personality tests to determine a mental disorder or not. I actually had it done twice on my donor..I used her for two cycles. It was well worth my peace of mind..You may also want to use an older donor, as we did..that also can rule out some issues depending on how far she has gone academically or in her profession. We also were able to verify her education history through a third party. Sounds crazy how much we went through but this was important to us as we have a load of "issues" with our family members.
In the end, DE was our only option and I thank G-d daily for this dear, dear gift..and precious, very loved child.
Our donor was anon but we used a hosptial clinic with very strict recruiting criteria. they reject 70% of their donor applicants. It's important that you trust your RE, the donor coordinator and the psychologist who interviews and screens you and the donor.
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Ariadne
Ariadne

March 22nd, 2011, 3:46 am #5

Hi. Before I start, I want to say that I do not intend to offend anyone. I know that children with the issues I mention below are often gifts to their families. What I doubt most is my ability to manage such challenges.

For those who have used an anonymous donor, are you worried about the donor's history (ie, what the truth really is)? I know agencies and clinics say they screen, but really, if they don't, there's no consequence for not doing due dilligence. And they don't (arguably can't) investigate the donors any more than blood tests and interviews.

This journey has certainly frightened me (opened my eyes to things I hadn't thought of), pervasive developmental disorders and autism scare me most (for now -- I'm sure lots of other things will come to scare me soon). I'm also aware that science doesn't really know why autism occurs, so can't say it's an inherited trait either. That said, I've seen articles that say the IVF process itself might contribute.

FWIW, my neighbor and her partner have two sons from an anonymous sperm donor. Both sons are autistic, while she and her partner have no history of autism in either of their families.

Thoughts? Does anyone know of a more reputable agency or clinic than another?

Has anyone heard of birth defect/developmental disorder tracking in children conceived by DE?
that many women are ttc with partners who are older & there is a somewhat higher incidence of autism in children of older fathers.

Also, most women move to DE having been told it is an egg issue. REs are loathe to test men beyond the standard semen analysis & are happy to proclaim eggs are the fertility issue with donor eggs being the solution. While this may be true overall, they are going to miss male factor issues in some cases & that may explain some issues with the resulting children some of the time.

There are no clears answers in this area & I'm far from qualified to offer any stats on any of this, but those are factors to at least consider.
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Anonymous
Anonymous

March 22nd, 2011, 3:47 am #6

Hi. Before I start, I want to say that I do not intend to offend anyone. I know that children with the issues I mention below are often gifts to their families. What I doubt most is my ability to manage such challenges.

For those who have used an anonymous donor, are you worried about the donor's history (ie, what the truth really is)? I know agencies and clinics say they screen, but really, if they don't, there's no consequence for not doing due dilligence. And they don't (arguably can't) investigate the donors any more than blood tests and interviews.

This journey has certainly frightened me (opened my eyes to things I hadn't thought of), pervasive developmental disorders and autism scare me most (for now -- I'm sure lots of other things will come to scare me soon). I'm also aware that science doesn't really know why autism occurs, so can't say it's an inherited trait either. That said, I've seen articles that say the IVF process itself might contribute.

FWIW, my neighbor and her partner have two sons from an anonymous sperm donor. Both sons are autistic, while she and her partner have no history of autism in either of their families.

Thoughts? Does anyone know of a more reputable agency or clinic than another?

Has anyone heard of birth defect/developmental disorder tracking in children conceived by DE?
I always chalked it up to the large percentage of twins from DE (prematurity and/or twin births are linked to lots of problems), or to the age of the fathers (DH sperm over 40 common for DE) or to poor health/advanced age in the gestating mothers. It certainly doesn't explain every case though.
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Anonymous
Anonymous

March 22nd, 2011, 5:15 am #7

Just curious, where did you notice this problem? Is that from being on this board or people you know in RL life who have done DE and have such problem? The reason I ask is this because as some one that is pursuing DE I've done some research but couldn't find a study to show that. of course other than the known lower birth weight just like any ivf and also slightly increased risk of pre-e with DE(still being looked at). I like to know what you source is so I can pursue it.
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Joined: February 6th, 2007, 1:08 am

March 22nd, 2011, 5:46 am #8

Hi. Before I start, I want to say that I do not intend to offend anyone. I know that children with the issues I mention below are often gifts to their families. What I doubt most is my ability to manage such challenges.

For those who have used an anonymous donor, are you worried about the donor's history (ie, what the truth really is)? I know agencies and clinics say they screen, but really, if they don't, there's no consequence for not doing due dilligence. And they don't (arguably can't) investigate the donors any more than blood tests and interviews.

This journey has certainly frightened me (opened my eyes to things I hadn't thought of), pervasive developmental disorders and autism scare me most (for now -- I'm sure lots of other things will come to scare me soon). I'm also aware that science doesn't really know why autism occurs, so can't say it's an inherited trait either. That said, I've seen articles that say the IVF process itself might contribute.

FWIW, my neighbor and her partner have two sons from an anonymous sperm donor. Both sons are autistic, while she and her partner have no history of autism in either of their families.

Thoughts? Does anyone know of a more reputable agency or clinic than another?

Has anyone heard of birth defect/developmental disorder tracking in children conceived by DE?
I personally have not noticed that there is a higher degree of autism or other abnormalities in DE or DS babies. I work within the DE field and keep in touch with nearly all my patients - we do about 30 cycles a month and I don't know of one person in real life that has an autistic child. I also wonder but don't know if the higher age of the father's is something to do with increased problems as I do note that on line research has shown that the father's of DE babies are often older. Patients here in Asia are normally quite alot younger in doing DE - many of my patients for instance are in their early 30's although I do have others that are in their early 50's. We have other patients who the lady is very young using own eggs with a husband 30 and even 40 years her senior - I also haven't seen in real life a problem here either.

As for screening of donors, you can request any screening you want as long as you are prepared to test for it. When we use donors in Singapore for instance, the screening process there is so much more stringent than in UK or Malaysia/Thailand. Donor IVF has to be agreed by the Singaporean Government also before the cycle goes ahead.

With regards to family history and exam results - the agent should be able to supply you with these and even if it is an anonymous donation where you are not allowed to know the donors full details there is no reason why you can't have her family history and exam certificates sent to the doctor for him to verify to you - that is what I do. If a recipient requests that she sees the degree of a donor I will give it to the doctor concerned so he can verify, yes x donor has a degree in x and x has a family history of xyz etc etc.

Whatever you want from your agent you should be able to request it. I fully understand that it can not come direct to you but IT CAN DEFINITELY be sent to the doctor in charge of the cycle.

Good luck.
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Joined: September 6th, 2007, 1:40 am

March 22nd, 2011, 6:00 am #9

Just curious, where did you notice this problem? Is that from being on this board or people you know in RL life who have done DE and have such problem? The reason I ask is this because as some one that is pursuing DE I've done some research but couldn't find a study to show that. of course other than the known lower birth weight just like any ivf and also slightly increased risk of pre-e with DE(still being looked at). I like to know what you source is so I can pursue it.
And I do wonder about sample size.

Sample size is CRITICAL. People always think that they figure something out from looking at the world--but you just can't. I could know 5 people with DEs and all 5 could have problems and it could mean nothing. You have to have a large sample to be able to make any judgments about trends.

This is why (I hate to say it) we can't learn very much if X person tells us what worked for her. We can try new stuff and hope to get lucky. But we are always lacking data.

Generally, there is a lack of data--which is why we tend to make these judgments. It's only natural, I'm not knocking us.
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Joined: September 6th, 2007, 1:40 am

March 22nd, 2011, 6:02 am #10

I personally have not noticed that there is a higher degree of autism or other abnormalities in DE or DS babies. I work within the DE field and keep in touch with nearly all my patients - we do about 30 cycles a month and I don't know of one person in real life that has an autistic child. I also wonder but don't know if the higher age of the father's is something to do with increased problems as I do note that on line research has shown that the father's of DE babies are often older. Patients here in Asia are normally quite alot younger in doing DE - many of my patients for instance are in their early 30's although I do have others that are in their early 50's. We have other patients who the lady is very young using own eggs with a husband 30 and even 40 years her senior - I also haven't seen in real life a problem here either.

As for screening of donors, you can request any screening you want as long as you are prepared to test for it. When we use donors in Singapore for instance, the screening process there is so much more stringent than in UK or Malaysia/Thailand. Donor IVF has to be agreed by the Singaporean Government also before the cycle goes ahead.

With regards to family history and exam results - the agent should be able to supply you with these and even if it is an anonymous donation where you are not allowed to know the donors full details there is no reason why you can't have her family history and exam certificates sent to the doctor for him to verify to you - that is what I do. If a recipient requests that she sees the degree of a donor I will give it to the doctor concerned so he can verify, yes x donor has a degree in x and x has a family history of xyz etc etc.

Whatever you want from your agent you should be able to request it. I fully understand that it can not come direct to you but IT CAN DEFINITELY be sent to the doctor in charge of the cycle.

Good luck.
How would you screen?

I'm not sure if there is a marker for autism yet. They barely understand autism.

You'd have to trust the donor about her family history--because you couldn't actually meet all her relatives!!

You'd also have problems knowing if she had the gene or not--E.g., I have a cousin with autism. Do I have the gene or does the unrelated party have the gene (their dad, in this case since their mom is my aunt)?

I think we are limited in what we can find.
Last edited by arive on March 22nd, 2011, 6:07 am, edited 1 time in total.
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