TTC with Genetic issues ❤️

[waffle222]

I thought I'd start a little thread to journal my experiences of TTC with our complications of genetic issues. We had a surprise pregnancy last year and misscarried spontaneously. The loss has got us deciding we do want to have a child if possible.

My partner has Huntington's Disease and any babies have a 50/50 chance of inheriting it. We were due to have CVS in our last pregnancy. We had an appointment to discuss PGD IVF recently but due to the wait times we realise this isn't going to be realistic for our family, given the time limit on my partners life. So we have decided to try naturally and have CVS testing done if I become pregnant again. My partner was previously fertility checked and told he had next to zero chance of natural conception. But we bet those odds by accident last year so I think his fertility must have improved.

Yesterday was OV day for me so 🤞

OK so, so far no signs except no crampings which indicate ovulation to be yesterday. I hold to wait until 10 dpo. TWW is upon us 🤞

Fingerscrossed for some healthy embryos for us x

Are you at least on a waiting list for IVF whilst you try naturally, or just going it alone completely? Some boroughs/counties provide PGS for those with genetic problems.

@Hairyfriend

Are you at least on a waiting list for IVF whilst you try naturally, or just going it alone completely? Some boroughs/counties provide PGS for those with genetic problems.

Yes we have had consultation with genetic team but in our area we will be 3 year wait at earliest. I am going for the blood test to check chances of egg retrieval, I can't remember what it's called exactly. Hopefully that'll be good so at least we will meet all criteria to be added to the list.

How old are you OP? My dh has a genetic condition with 50:50 chance of passing it on. If I had known when we was younger I would have frozen my egg. I was in a similar position to you three years ago. Waiting for a CVS but had a early miscarriage.

I think the CVS and tfmr would be very hard to do.

@WhiteJellycat

How old are you OP? My dh has a genetic condition with 50:50 chance of passing it on. If I had known when we was younger I would have frozen my egg. I was in a similar position to you three years ago. Waiting for a CVS but had a early miscarriage.

I think the CVS and tfmr would be very hard to do.

Sorry to hear you went through that and of your DHs condition. I'm 32. I'm very nervous about the possibility of tfmr, but I feel that's the only choice left for now.

I know we can have a NIPT done privately around 8-9weeks but it's £3000. I don't understand why they are offering this now for high risk of downs etc and not for people like us.

Hi op. I have HD and I discounted IVF because of the poor success rate. I conceived, had a CVS. First pregnancy was positive for HD so I had a TFMR. Second pregnancy was fine and I now have a lovely child.

Would you consider doner sperm? It's a lot for you to take on, particularly as you don't carry the disease yourself.
Any questions you have, please ask.

Hi @waffle222 pregnancy is risky for us too for genetic reasons. Nipt is 450 not 3k, I had it done privately in my last pregnancy. Having said that, its not diagnostic whereas a cvs is. Is using donor sperm via iui something you’ve considered (we did 3 rounds)?

@luckysantangelo360

Hi op. I have HD and I discounted IVF because of the poor success rate. I conceived, had a CVS. First pregnancy was positive for HD so I had a TFMR. Second pregnancy was fine and I now have a lovely child.

Would you consider doner sperm? It's a lot for you to take on, particularly as you don't carry the disease yourself.
Any questions you have, please ask.

Thank you for sharing with me. So sorry to hear of your loss but lovely you've had a child in the end ❤️

Yes the success rate is so low and the wait is a long time, it doesn't feel right for us. I hadn't thought much about donor sperm but I already have children from a previous relationship, and I think my partner would love a child that was biologically his if at all possible. It is a lot to take on, also considering the future ahead of us. I'm sure you understand. X

Sorry for your previous loss OP How does your DH feel? You said he had fertility checked previously, but how long ago was that? Sperm quality/count changes daily. Would he consider sperm donation if needed or adoption?

Are you sure the NIPT for genetic disorders can be done at 8-9 weeks. I had one for general downs, T13 and 18 etc, but the minimal was at 10 weeks. I'd look around re prices too- even if you had a travel a bit farther away for it. I agree, you'd think this would be available for people with genetic disorders.

We don't have a known genetic condition, but my 1st pregnancy had patau syndrome- discovered on the NIPT. I chose TFMR. My 3rd MC had a monosomy condition. I realise PGD is different to PGS, but I looked into it a great deal. Happy to answer any questions you might have

@Rrrob

Hi *@waffle222* pregnancy is risky for us too for genetic reasons. Nipt is 450 not 3k, I had it done privately in my last pregnancy. Having said that, its not diagnostic whereas a cvs is. Is using donor sperm via iui something you’ve considered (we did 3 rounds)?

We were told by his doctor that a NIPT for HD would require different testing so costs are around 3k, but I can't actually find anywhere that actually does them other than to screen for downs etc. So only going off what she said, I'll maybe ask her further details on that.

I don't think my partner would want donor sperm in all honesty, unless it was a last resort.

Sorry for your loss. Sending love and strength to you and your DH.

Have you thought about pursuing all the options in parallel? It's just an idea, I'm not even sure if it is possible. Get on IVF waiting lists, 'window-shop' private ivf clinics abroad just to learn about price ranges and waiting times.

@IsabelHerna

Sorry for your loss. Sending love and strength to you and your DH.

Have you thought about pursuing all the options in parallel? It's just an idea, I'm not even sure if it is possible. Get on IVF waiting lists, 'window-shop' private ivf clinics abroad just to learn about price ranges and waiting times.

Thank you ❤️

We have perused NHS IVF waiting list but haven't looked privately. I might have a look. Although I've been told it's very expensive with PGD. We don't have much income security going forward due to DPs HD, so it wouldn't be wise to use so much money on it :(

I'm 4 DPO today, had a little wobble last night. My anxiety was sky high. I'm trying not to be overwhelmed by what would have to happen if I am pregnant. Last time I was really stressed trying to find out about booking the CVS. I keep reminding myself that I know who to contact and the process now at least so it won't be the same as last time. Trying to take it one step at a time. 🤞

Some hospitals/clinics advertise their prices openly. I've included the one got Guys, London below. Privately their PGD is £10,000!

I'd also check the IVF for your area. Some areas only accept non-smokers, other areas require a certain BMI etc so check carefully if there is anything you can do now to make you qualify for NHS IVF when you get to the top of waiting list. Best of luck op x

guysandstthomasprivatehealthcare.co.uk/wp-content/uploads/2018/11/ACU-Self-Funding-Price-List.pdf

[quote Hairyfriend]Some hospitals/clinics advertise their prices openly. I've included the one got Guys, London below. Privately their PGD is £10,000!

I'd also check the IVF for your area. Some areas only accept non-smokers, other areas require a certain BMI etc so check carefully if there is anything you can do now to make you qualify for NHS IVF when you get to the top of waiting list. Best of luck op x

guysandstthomasprivatehealthcare.co.uk/wp-content/uploads/2018/11/ACU-Self-Funding-Price-List.pdf[/quote]
Thank you very much. We have been told the criteria with my partners genetic doctor. Non smoking, age under 38, certain BMI etc. We meet all criteria but they want to check a blood test for some number resting to how success egg retrieval may be. They said something about it usually being above 5 but for PGD it's 7 or more. So I have that booked for two weeks times so at least we will know if everythings OK after that.

Thanks for the quote. X

Feeling deflated today as I took a Frer and BFN but I'm only 8dpo 🙈

I want to try and wait but I've been cramping and it's been on my mind constantly. I'm working today though so I'm hoping the busy day will distract me.

10 DPO today and BFN :(
I was feeling pretty hopeful.
I'm not sure what we will do next cycle. I think given the fact a BFP is just the start of a few months of extreme worry and stress, I tho k we should try hard to not think too much about it.

I'm going to try and focus on our nice Valentines weekend for now x

@waffle222 have you considered PGD at a private clinic (still with NHS funding) rather that doing it at a hospital? I have a genetic condition that is also a 50% rate of passing the gene on and decided to go to a private clinic as it was 7 months quicker than a big hospital in London.

2 DPO

Well I took a break from TTC as I was struggling with the loss in November. Last month I had another early m/c and have been prescribed progesterone for use if I fall pregnant again.

I felt calm and happy when I found out I was pregnant last time. A big difference to last year as we now know what's involved with testing etc. It feels like there's so many obstacles to a baby for us but all we can do is take one day at a time