Tough decisions...(bio child ment)- would love to hear your opinions...

Tough decisions...(bio child ment)- would love to hear your opinions...

bethphx
bethphx

August 19th, 2011, 1:44 am #1

Hi all:

I really respect your opinions and would like to bounce some ideas off of you...You may not remember but the reason I am doing DE is because my four year daughter is disabled- basically has CP due to poor heart function at 3 months which may/may not have been caused my a mitochondrial disease which may/may not be genetically inherited. There are many unknowns but bascially this is a disease in which there are so many mutations that it is nearly impossible to say if she actually has it and if it is the type she has inherited. We decided after 4 yrs of weighing options to not take any chances and do DE. I was actually more ok with it than my DH because I did not want to go through this again. With mitochondrial disease- it can range from mild to severe and if inherited, is recessive so around 25% chance with each pregnancy. Some kids just have tummy issues, while more severe can have heart or brain issues.

So you know I have had lining issues and my frozen cycle ended in miscarriage. We have been trying different mocks since last December and I feel like I have been on meds for so long and this is so frustrating! Especially because going into this we though it was a sure thing. We did not technically have "infertility" problems and were doing this for genetic reasons. We have now realized just how little control we have over the process and life in general So now my husband has brought up the idea of us trying naturally again. Or at least nit using birth control until our next cycle and letting "whatever happens happens." Initially, I was open to it because I felt frustated with my beta roller coaster and felt like maybe I should have faith and if I can conceive on my own, go for it.

So my thoughts change on a daily basis- first I think great- how easy I get to get pregnanct on my own no drugs-and the chances are in our favor that we would have a healthy baby- I just need to have some faith. Then the next day I think absolutely not- why would I take that chance- w just sent 25K and have 13 blasts waiting- although at 4k a pop- for FET's. I do not know which way to go...then part of me wants to put two embies in next time to up the chances- even though we were opposed in the beginning because we already have a special needs child-how could I care for twins too?

Thanks for listening to my rant...I know there are pros and cons to both and we are not guaranteed a healthy child with DE either but I would love to hear anyones opinions...

Beth
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Joined: February 6th, 2007, 1:08 am

August 19th, 2011, 2:11 am #2

I can't speak from personal experience but I think personally I would be cautious and go with the DE blasts you have on ice. OTOH I have a cousin who has a very disabled child due to some genetic issue between her and her husband with also a 25% chance of any other child having he same issues, she did have another biological child and was on the very lucky 75% of the odds and her second child is such a wonderful help to her and the other child who is now 31 years old.

This is a decision only you and dh can make with help from a genetic counsellor. Sorry you are going through all these lining issues, I think that is causing you to have these second thoughts, why can't anything be easy? How is your natural lining? You could always do a natural FET if your lining is good.

Here to support you with whatever decision you make.
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bethphx
bethphx

August 19th, 2011, 2:59 am #3

always value your opinion- it is the lining issue that is causing problems. Now I feel like we may not be able to get pregnant this way so why not go back to the old fashioned way? I do want to do a natural FET if I do anything because I feel that all the artificial hormones are hurting-not helping the situation...the next question is do we put 2 back to increase chances? Honestly 2 healthy, non-special needs children would probably be easier for us to handle than another special needs child, ya know? On the other hand, I have heard putting 2 back does not really increase pregnancy chances, just twin chances. But we can't spend $4000 a piece for 10 more FETs - don't exactly have that kind of money- so at some point will consider putting 2 in...
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Joined: May 15th, 2010, 12:08 pm

August 19th, 2011, 11:37 am #4

Hi all:

I really respect your opinions and would like to bounce some ideas off of you...You may not remember but the reason I am doing DE is because my four year daughter is disabled- basically has CP due to poor heart function at 3 months which may/may not have been caused my a mitochondrial disease which may/may not be genetically inherited. There are many unknowns but bascially this is a disease in which there are so many mutations that it is nearly impossible to say if she actually has it and if it is the type she has inherited. We decided after 4 yrs of weighing options to not take any chances and do DE. I was actually more ok with it than my DH because I did not want to go through this again. With mitochondrial disease- it can range from mild to severe and if inherited, is recessive so around 25% chance with each pregnancy. Some kids just have tummy issues, while more severe can have heart or brain issues.

So you know I have had lining issues and my frozen cycle ended in miscarriage. We have been trying different mocks since last December and I feel like I have been on meds for so long and this is so frustrating! Especially because going into this we though it was a sure thing. We did not technically have "infertility" problems and were doing this for genetic reasons. We have now realized just how little control we have over the process and life in general So now my husband has brought up the idea of us trying naturally again. Or at least nit using birth control until our next cycle and letting "whatever happens happens." Initially, I was open to it because I felt frustated with my beta roller coaster and felt like maybe I should have faith and if I can conceive on my own, go for it.

So my thoughts change on a daily basis- first I think great- how easy I get to get pregnanct on my own no drugs-and the chances are in our favor that we would have a healthy baby- I just need to have some faith. Then the next day I think absolutely not- why would I take that chance- w just sent 25K and have 13 blasts waiting- although at 4k a pop- for FET's. I do not know which way to go...then part of me wants to put two embies in next time to up the chances- even though we were opposed in the beginning because we already have a special needs child-how could I care for twins too?

Thanks for listening to my rant...I know there are pros and cons to both and we are not guaranteed a healthy child with DE either but I would love to hear anyones opinions...

Beth
about your dd's disability.

Is it possible to do a study of your own eggs or embies, either polar body biopsy or pgd, and find the good eggs/embryos?

I have a friend who is surro, and she didn't get pg on the fresh cycle -- the drugs seemed to interfere. She got pg on a natural cycle. You could try this, too, transferring the embies at the appropriate time. It works better for some women.
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LizLA
LizLA

August 19th, 2011, 2:39 pm #5

Hi all:

I really respect your opinions and would like to bounce some ideas off of you...You may not remember but the reason I am doing DE is because my four year daughter is disabled- basically has CP due to poor heart function at 3 months which may/may not have been caused my a mitochondrial disease which may/may not be genetically inherited. There are many unknowns but bascially this is a disease in which there are so many mutations that it is nearly impossible to say if she actually has it and if it is the type she has inherited. We decided after 4 yrs of weighing options to not take any chances and do DE. I was actually more ok with it than my DH because I did not want to go through this again. With mitochondrial disease- it can range from mild to severe and if inherited, is recessive so around 25% chance with each pregnancy. Some kids just have tummy issues, while more severe can have heart or brain issues.

So you know I have had lining issues and my frozen cycle ended in miscarriage. We have been trying different mocks since last December and I feel like I have been on meds for so long and this is so frustrating! Especially because going into this we though it was a sure thing. We did not technically have "infertility" problems and were doing this for genetic reasons. We have now realized just how little control we have over the process and life in general So now my husband has brought up the idea of us trying naturally again. Or at least nit using birth control until our next cycle and letting "whatever happens happens." Initially, I was open to it because I felt frustated with my beta roller coaster and felt like maybe I should have faith and if I can conceive on my own, go for it.

So my thoughts change on a daily basis- first I think great- how easy I get to get pregnanct on my own no drugs-and the chances are in our favor that we would have a healthy baby- I just need to have some faith. Then the next day I think absolutely not- why would I take that chance- w just sent 25K and have 13 blasts waiting- although at 4k a pop- for FET's. I do not know which way to go...then part of me wants to put two embies in next time to up the chances- even though we were opposed in the beginning because we already have a special needs child-how could I care for twins too?

Thanks for listening to my rant...I know there are pros and cons to both and we are not guaranteed a healthy child with DE either but I would love to hear anyones opinions...

Beth
But I woudn't do it.25% chance would be too high for us.

Sorry, it's not an easy situation.

GL
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Zaytune
Zaytune

August 19th, 2011, 2:39 pm #6

Hi all:

I really respect your opinions and would like to bounce some ideas off of you...You may not remember but the reason I am doing DE is because my four year daughter is disabled- basically has CP due to poor heart function at 3 months which may/may not have been caused my a mitochondrial disease which may/may not be genetically inherited. There are many unknowns but bascially this is a disease in which there are so many mutations that it is nearly impossible to say if she actually has it and if it is the type she has inherited. We decided after 4 yrs of weighing options to not take any chances and do DE. I was actually more ok with it than my DH because I did not want to go through this again. With mitochondrial disease- it can range from mild to severe and if inherited, is recessive so around 25% chance with each pregnancy. Some kids just have tummy issues, while more severe can have heart or brain issues.

So you know I have had lining issues and my frozen cycle ended in miscarriage. We have been trying different mocks since last December and I feel like I have been on meds for so long and this is so frustrating! Especially because going into this we though it was a sure thing. We did not technically have "infertility" problems and were doing this for genetic reasons. We have now realized just how little control we have over the process and life in general So now my husband has brought up the idea of us trying naturally again. Or at least nit using birth control until our next cycle and letting "whatever happens happens." Initially, I was open to it because I felt frustated with my beta roller coaster and felt like maybe I should have faith and if I can conceive on my own, go for it.

So my thoughts change on a daily basis- first I think great- how easy I get to get pregnanct on my own no drugs-and the chances are in our favor that we would have a healthy baby- I just need to have some faith. Then the next day I think absolutely not- why would I take that chance- w just sent 25K and have 13 blasts waiting- although at 4k a pop- for FET's. I do not know which way to go...then part of me wants to put two embies in next time to up the chances- even though we were opposed in the beginning because we already have a special needs child-how could I care for twins too?

Thanks for listening to my rant...I know there are pros and cons to both and we are not guaranteed a healthy child with DE either but I would love to hear anyones opinions...

Beth
Dear Beth , you have suffered a devastating loss . I think even in our infertility world a chemical pregnancy is not afforded the same respect as other losses . When my last attempt ended in a chemical I was beyond devastated . I was looking online for ways to cope with loss and I found a concept called " disenfranchised grief " . Certain situations are openly acknowledged by society and the person with the loss is totally supported . For instance a person losing their spouse in a traditional man woman relationship would be fully acknowledged and supported , but on the other hand if it is relationship not approved by society , maybe a gay couple , losing their partner would not be given the same acknowledgement and support . Even though the suffering is really the same . I truly believe that chemical pregnancies are devastating and added to it is the fact that our bodies crash with the loss of hormonal support , similar in a way to postpartum depression . What I am trying to say is , please give yourself sometime before you make a decision. You will feel better after a while , especially when your body gets adjusted to the hormonal imbalance it just suffered . You are in a vulnerable state with grieving and it is very frustrating to have it not work after coming so close . I think the odds of having another special needs child with your own eggs might be low , but there are families with more than one special needs children and it is devastating . In watching infertility boards for 5 yrs ( yes it has been that long that I have been doing IVF) women who struggle with lining issues seem to eventually get successful . Having a good number of blasts is very reassuring in this regard . As to transferring two embryos , after deciding firmly that I would transfer one ,when it came to transfer I went ahead and transferred two . Could not stand to have another BFN . Also I would look at your clinics FET success rates . If it is something like 30% , I would feel tempted to transfer two . On the other hand if it is 60% like my clinic , the odds of BFN are lower and transferring one might be a better idea . Maybe the success rate of your clinic could help you decide . I am watching your posts and will be hoping to see you move forward to your FET and success.
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bethphx
bethphx

August 19th, 2011, 3:00 pm #7

It is a devastating loss- I had my hopes up and was "planning" for the pregnancy..then the drop in hormones after stopping the meds- yikes! I think that caused a lot of my "forget this, lets just do it on our own" attitude! Even this morning, I am feeling more like I can do this and we will just keep doing FETs until one works. The financial aspect of this just makes it so hard too - it is so stressful to have to be put into debt every time we do this. My clinics FET success rate is around 55% and he said maybe higher with our good quality blasts (although thinner lining probably decreases it again). I think I would do one or two more SETs, then move on to putting two in...I will see how my cycle is next time and then hopefully anticipate doing a natural FET after next period. I need to keep remembering that the stress of a special needs child is far greater than this process and I just need to be patient...
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Joined: September 13th, 2008, 5:13 pm

August 19th, 2011, 3:17 pm #8

Hi all:

I really respect your opinions and would like to bounce some ideas off of you...You may not remember but the reason I am doing DE is because my four year daughter is disabled- basically has CP due to poor heart function at 3 months which may/may not have been caused my a mitochondrial disease which may/may not be genetically inherited. There are many unknowns but bascially this is a disease in which there are so many mutations that it is nearly impossible to say if she actually has it and if it is the type she has inherited. We decided after 4 yrs of weighing options to not take any chances and do DE. I was actually more ok with it than my DH because I did not want to go through this again. With mitochondrial disease- it can range from mild to severe and if inherited, is recessive so around 25% chance with each pregnancy. Some kids just have tummy issues, while more severe can have heart or brain issues.

So you know I have had lining issues and my frozen cycle ended in miscarriage. We have been trying different mocks since last December and I feel like I have been on meds for so long and this is so frustrating! Especially because going into this we though it was a sure thing. We did not technically have "infertility" problems and were doing this for genetic reasons. We have now realized just how little control we have over the process and life in general So now my husband has brought up the idea of us trying naturally again. Or at least nit using birth control until our next cycle and letting "whatever happens happens." Initially, I was open to it because I felt frustated with my beta roller coaster and felt like maybe I should have faith and if I can conceive on my own, go for it.

So my thoughts change on a daily basis- first I think great- how easy I get to get pregnanct on my own no drugs-and the chances are in our favor that we would have a healthy baby- I just need to have some faith. Then the next day I think absolutely not- why would I take that chance- w just sent 25K and have 13 blasts waiting- although at 4k a pop- for FET's. I do not know which way to go...then part of me wants to put two embies in next time to up the chances- even though we were opposed in the beginning because we already have a special needs child-how could I care for twins too?

Thanks for listening to my rant...I know there are pros and cons to both and we are not guaranteed a healthy child with DE either but I would love to hear anyones opinions...

Beth
Trying naturally. It just has all seemed so perverse to me that you aren't actually infertile but have had all these issues conceiving w/DE. Anyway, is this condition something that can be detected through amnio or CVS? If so, are you open to terminating? That sounds horrible, I know, but ultimately it's a question we all have to face if we get pg and the doctors know there is a problem. And it's different (to me, at least) if you know a child would face a great deal of pain and suffering if born (which isn't to say I would be ready to terminate under less compelling circumstances).

If this is a detectable illness, then yeah, I think I'd return to natural conception, b/c it sounds as though there's a great deal of doubt as to whether your daughter's condition was genetically transmitted. If not, then, well, maybe try a few more FET's?

I'm sorry this has all been so hard for you!

Take care,

Maggie (in VA)
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bethphx
bethphx

August 19th, 2011, 6:06 pm #9

mainly because we do not technically have an infertility problem! Maggie, the disease is not detectable prenatally and there is no way to test my eggs because there are so many different mutations. A muscle biopsy is really the only way to detect and even that is not 100% Most children start with symptoms during the first 3 years- ay daughter at 5 weeks...so I would be so worried throughout the pregnancy and beyond that the child would be affected...I had to ask myself- if finances were not an issue- would you be having second thoughts about DE? The answer is no. So obviously, I just need to suck it up, max out credit cards, accept the fact that we cannot contribute to savings or retirement for the next year and having a healthy child is more important than any of those things. I am just starting to get resentful and I feel bad because so many ladies here have spent so much more money and years trying than I so I am just starting to get a taste of that. Part of me feels that we have had to deal with so mucg with our daughter can we just catch a break already please!? Persistance is the name of the game here I am learning....
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Joined: September 13th, 2008, 5:13 pm

August 19th, 2011, 8:06 pm #10

Of the women here. I never know whether IF patients hear what they want to hear when their doctors encourage them to go to DE and they come to this forum thinking it's a sure thing or whether their doctors really are creating these unrealistic expectations. I guess since I went straight to DE due to my age, it always looked risky enough for my blood. Anyway, I'm glad to hear that you are sorting out your thinking on the subject; I can't imagine how difficult it is, especially with a special needs child. The good news, you are still young. It's one thing maxing out cards and not contributing to savings or retirement in your thirties; much scarier in your forties and fifties. And you have a bunch of frosties, too.

I'm so wishing you luck on your next cycle!

Maggie (in VA)
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