IVF with PGD #4

Hi ladie's
I havn't posted on here for a while we have been a bit busy moving house ,working geneticist appt ect.
Anyway we got our results back we are carriers ot the SMITH LEMLI OPITZ SYNDROME so we have the 1 in 4 of each pregnancy being affected they have told us to wait 2-3 months before getting pregnant so they can isolate the gene to test for it in future pregnancies

I wanted everyone's opinion if you dont mind in my situation and can concieve naturally would you take the risk of the next baby being affected with SLO or would you just go straight to PGD IVF and know for sure that the embie was not affected with it but the chance of concieving is like only 40% (so i have been reading) i have just been thinking about it i would love to get pregnant natrually but terminating at 13 weeks if the baby is affected is playing on my mind i would love your opinion and don't be afraid to be honest with me i will not judge anyone on their replies i just want some outside imput on what others who are in the same situation would do.

My FS just called - she thinks we would still have a chance even if DP's semen result does not get better but that we would have a better chance with an egg donor. Not really sure I trust her on this, at the moment only having very dark thoughts.

Kate: Thank you for being always there for me.

Ferrals: that's a really hard call to make, have done both and to be honest must say in hindsight if I had already children both would never be something I would consider for myself it's cames at a great emotional and physical cost. With the IVF option it depends on the number of eggs you can produce and the sperm quality - I would do some tests, they can check you on CD5 to see how many follicles you have and can check your FSH on CD2, they can also test your DH's sperm quality and DNA fragmentation - these results should give you an better idea on what chances you have with IVF.

Sara

Sara69-thanks for your opinion and i don't want people to see me as greedy for wanting more children you see i thought i had finished having kids my marriage ended and i thought my baby day's were over then when i met my now DH he had one daughter he doesn't get to see often as she lives a fare distance away and i saw how great he was with my boy's and he said he always wanted a couple of kid's we talked about it and i said i would have one more to complete our family then after we lost abbi we were so heart broken that i feel we will never get over or move on from abbi's loss if we do not try to fulfill our dream we will regret it for the rest of our live if we dont try so this is why i am here i fall pregnant fairly easy but i'm not sure i want to take the risk and just go with PGD IVF

Ferrals, really sorry I didn't want to come across as judging you, that is really not my intention. It was more about how hard this journey is, but you know that yourself:hug:

I think it's really brave of you to consider your options especially after going through so much.

To be honest I am thinking about going natural myself, but not really sure if I could survive it if it went wrong again. For me the odds are 50/50 - I have a friend at work who was in similar situation as you losing a baby at a very late stage and finding out about the genetic condition afterwards, for her the chances were 1 to 4 as for you, she got pregnant again immediately had a healthy boy and then two years later a healthy girl.

It's probably not the best day for me to write about this as I had just bad news about my last cycle and feeling a bit raw inside.

Sara

Sweet Sara - so sad to log on and read about your disappointing result. Totally understand that you are in a dark place. Sending you the biggest sincerest :hug:. I wish I had something helpful to say, aside from my keeping my :crossfingers: for this last emby. The whole IVF thing is so horribly taxing on our hearts, minds and bodies. I know in my case DH and I talked about both donor eggs and adoption if we could not get to blast stage. Thinking of you, hun :comfort:

Ferals - I am glad you found the reason for your loss and that you have the option of PGD. I remember you mentioning in a past post that if it had been another specific problem, that PGD would not be available to you. In response to your question about IVF/PGD versus naturally conceiving: When I did IVF I took the view that the 40% successful PGD transfer rate was a good thing. In our mid-30's I think conception is something like 15% in a natural cycle. Also, I had a natural chemical PG in January after 3 MC's (two of those had been confirmed as spontaneous chromosonal losses). When I first got that short-lived BFP I was terrified - DH and I both said straight away that we had wished we had had the reassurance of PGD. Sara gave sound advice about some pre-testing before a cycle. A good follicle count and your FSH level will give the FS an idea of how well you may respond to an IVF cycle before dishing out the $'s. HTH.

Sara69-thank's for your reply i understand what you are trying to say i just wanted you girl's to know this is somthing i have thought long and hard about and i have to follow my heart but thankyou for your opinion it help's and if your friend had luck with her babies it give's me hope and i'm sorry you got bad new's about your last cycle.

Where there's hope-thank's i was also thinking about the chances of natrual conception each month are not real great in your 30's and i am considering trying natrually while we wait for the geneticst to isolate the gene it could be between 4 and 12 weeks if we are not pregnant by then i will look into IVF thank's for the info it give's me more to think about and i will pop in here from time to time if you dont mind an amature inexperienced PGD IVF girl asking questions.

Girls,

I've decided to take a break from TTC - at the moment investigating egg donation as I've decided that with my own eggs the numbers are too much stacked against us, so porbably won't post much for a few months.

Sending you all :bluedust: and :stickyvibesgirl:

Thanks so much for your support during this hard time in my life.

:grouphug:

Sara

:hug: Sara

Sara - :comfort: If you ever need to vent or chat, you know where to PM me. Always here for you, hun xx

Sara - Big, big hug.

Ferrals - get on the waiting list for PGD anyway. Start the feasibility phase now, since it can take a year or more, and the IVF odds are much worse in your late 30's than your mid 30's. Best of luck with whatever your eventual decision is.

I've been posting with Sara on the "IVF with High FSH" thread - so I hope you guys don't mind me gatecrashing your thread.

Sara - I'm sorry for you. There's nothing I can say except to just remember you are not alone in this - many, many of us struggle with what should come so damn easily and there's just no rhyme nor reason for it. Sadly we totally understand the pain and heartache of this journey and share it with you. I hope you find peace and resolve and that the clouds lift soon - and I secretly hope and pray you get a natural unaffected miracle! :hug:

Kmn-are you serious the waiting list for PGD is at least a year why? when normal ivf is'nt very long my girlfriend started having treatment right away after her councelling sessions is that a year before they even start they are having our gene isolated now and i was told it will be 10 to 12 weeks to find it then it's our choice if we want to go ivf or try natrual i am devastated now can you tell me why it takes so long.

If the gene is easy to isolate and find a probe for then it could take 10-12 weeks to do that part of the process. If it takes longer to find a probe that works, it will take longer. Then once they have nailed that bit you then have to book in for a cycle......do not expect to get in straight away to cycle like you do with normal IVF. With PGD they can only process a couple of peoples embryos through the labs each day because it is such a specialised process so you will be slotted in when they have a spot available. For example we booked in before Christmas to do a PGD cycle and were told there were no slots till the April cycle so basically you have to wait your turn. And you can't get on that waiting list till they have your probe sorted out...no point cycling if they are not going to be able to isolate the gene...... it is not a short process......

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If the gene is easy to isolate and find a probe for then it could take 10-12 weeks to do that part of the process. If it takes longer to find a probe that works, it will take longer. Then once they have nailed that bit you then have to book in for a cycle......do not expect to get in straight away to cycle like you do with normal IVF. With PGD they can only process a couple of peoples embryos through the labs each day because it is such a specialised process so you will be slotted in when they have a spot available. For example we booked in before Christmas to do a PGD cycle and were told there were no slots till the April cycle so basically you have to wait your turn. And you can't get on that waiting list till they have your probe sorted out...no point cycling if they are not going to be able to isolate the gene...... it is not a short process......

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Ferrals, IMO, that is why I think it is a good idea to organise an appt with a FS at the clinic of your choice, even before you know for sure, what path is right for you, in Melb, I am on the wait list till end of August to get my frozen embryo transfered at my old clinic, as I don't want to use the other FS I used to use there.

If you start to slowly make appointments, and just pace your way through your own journey, you will be prepared for any delays hun

HTH

Ferrals, I did PGD with SIVF in Sydney, once you have had an appointment with your FS and done all the check ups and the gen is isolated you can start right away, there is NO waiting list in this clinic. Isolating the gen took 12 weeks for me. So if you start putting things in motion right away you could possibly start a cycle in 3 months.

However, I agree that there could be waiting lists in other clinics and that as WLAB said it's a really good appointment to organise an appointment with an FS straight away as it can take 4 to 8 weeks to get an appointment. Also there are some changes to the safety net which will make IVF more expensive after Jan 1 so it's a good idea to try to get a cycle in before that.

Good luck

Sara

Sara-thank's that has eased my mind a bit as we will be going through syd ivf and i'm worried about my age i know it get's harder the older you are also if you don't mind i have been reading some pretty scarey prices that come with pgd ivf but on the syd ivf web site it's not so bad but it doe's say the genentic testing of the embryo's is an extra cost that is not covered by medicare would you mind giving me a rundown of what extra cost's are involved

Ferrals - As Sara said, if you are going with SIVF, there is no waiting list. As soon as you have the gene isolated you should be able to run with your next cycle. But you do need to have had your initial consult with your SIVF FS and there may be some paperwork to get out of the way in advance. Your FS may also want to do some BT's in advance so they have an idea of what dose of FSH they should start with for you. The classic cycle is a "down regulated cycle", so you will probably commence the pill (Provera) around Day 19 for seven days of that next menstrual cycle. The following month is when you will have the actual egg collection (and hopefully, transfer). Like you, I am not based in Sydney, so I did most of my cycle with my local (satellite) clinic. But PGD is not offered here, so I had egg collection, biopsy and transfer performed in Kent St. All up I had three PGD cycles. The first was cancelled = free. The second two involved transfer and came in under $4K each as I had passed the Medicare safety net. I had chromosonal testing (x8) so the cost may slightly vary compared to your genetic PGD test. Sorry, do not remember the exact amount. HTH, WTH ;)

Thank's ladies- i rang syd ivf and got all the info today i am booked in for a phone consultation on the 21st of july as we live on the coast then i will go for my appt with the FS and have our work up and see the geneticist they said it will be about 8-10 week''s then they start the with the cycles i was told $14275 all up and i would be out of pocket $5000-$6000 plus medication's and the $400 FS fee $550 geneticist fee and the $160 ph consult fee i did ask can they put 2 embryo's in to increase our odd's and can we know the sex of the embryo's before they put them in and they said i have a good possibility of that in my case so we will see