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IVF only due to genetic screening

(30 Posts)
ColdCottage Thu 14-Jun-18 00:29:25

Hi, I am wondering if anyone else has had IVF only because of genetic disorders which they wish to screen for?

I have been fortunate enough not to have had issue getting pregnant before, one DS and 1 miscarriage but have now learnt my DS has a medical condition which DH and I are carriers for.

Feel quite torn and emotional about the IVF process when I feel I shouldn't need it. I know that probably sounds silly and I would be choosing it to avoid another child having a potentially life threatening illness and I could risk it with a natural attempt.

I just wondered if anyone else had been through this and could offer any words of wisdom.

Thank you.

hoping2018 Thu 14-Jun-18 06:48:55

Hi @ColdCottage you may be better posting this on the infertility section where lots of people have had ivf with pgs testing

ColdCottage Thu 14-Jun-18 19:07:59

Thank you. I will ask.

AnyaMumsnet (MNHQ) Mon 18-Jun-18 11:00:02

Hi everyone,

Just letting you know that OP has asked for the thread to be moved to the infertility boards, so we're doing that now.

Ginandtonic31 Mon 18-Jun-18 19:56:51

Hi @ColdCottage. I’m currently going through IVF for genetic screening. I did feel like that at first and still do sometimes, but I’ve also just taken it on matter of factly and felt fortunate that we know about the condition and that we have this opportunity. Happy to answer any questions. I’m currently stimming for egg collection. It’s our first round.

ColdCottage Mon 18-Jun-18 20:51:51

Thanks @Ginandtonic31 I appreciate your message.

Do you know if the regulations on IVF change for genetic reasons? It's only if you are under 35 and have no children otherwise here.

tenbob Mon 18-Jun-18 20:55:14

It depends where you are, but where I am, you qualify for 3 rounds of ivf with PGS if you have a genetic condition and have no existing healthy children
Ironically, you don't qualify for this type if you have fertility issues. They use the PGS service for genetic conditions only

Ginandtonic31 Mon 18-Jun-18 21:01:04

PGD for genetic reasons isn’t by CCG. It’s three rounds across the board set by NHS England. It’s under 40 I believe and no healthy children from the current relationship.

ColdCottage Mon 18-Jun-18 21:04:24

Thank you that's really good to know.

I only have 1 child who has the condition and am under 40.

Some good news today it seems. Thanks!

Ginandtonic31 Mon 18-Jun-18 21:09:49

There’s some info here www.england.nhs.uk/wp-content/uploads/2013/04/e01-p-a.pdf

ColdCottage Mon 18-Jun-18 21:18:16

Thank you.

Once you had been referred to your Regional Clinical Genetics Service How long did it take to get blood tests/results and then a referral for PGD and then start the IVF process?

Ginandtonic31 Mon 18-Jun-18 21:35:02

@ColdCottage I think it all depends on the condition etc. We were referred 3.5 years ago and had to wait to see geneticist then we had a couple of years while they investigated our condition etc as it’s quite rare then we were referred for PGD. We had our first PGD appointment last June and started our first cycle this month.

ColdCottage Mon 18-Jun-18 22:19:48

@Ginandtonic31 wow, I hope that's not the case for me, my son would be 8 and I would be too old over 40.

There is a 50% chance of a child getting our genetic condition if one of us have it and given our son has it and can only get it due to a genetic disorder I hope I won't have to wait that long.

I hope your first cycle goes to plan.

Do you have any other children with it already or will this be your first child if you don't mind me asking? If you do no problem.

Ginandtonic31 Tue 19-Jun-18 07:08:52

@ColdCottage my husband has a son with the condition already but we have no children together. It’s also a 50% chance of passing it on but the rare condition meant at the time it wasn’t licensed for PGD and they didn’t know what gene it was in as it can be in several. Because there’s a lot of people in my husband’s family with it, they agreed to do some research into it and carried out some blood tests etc and in the end they were fairly certain to say which gene they think it’s in. In the meantime luckily the disorder became licensed which was great as we didn’t have to wait for that. Have you checked that what you want to test for us already licensed etc as that will save you time? It isn’t a quick game unfortunately, there’s lots of long waits and even now after we’ve had our eggs collected we need to wait 6 months for the test to be built and find out if any have the disorder. Patience is all I can say! Luckily we started when I was around 27 when I didn’t have a clue If I wanted kids.

ColdCottage Tue 19-Jun-18 08:44:29

@Ginandtonic31 wow that is a long time. Glad you got a head start on it though and that the licence came in for you.

Yes there are three identified genes and it's already licensed so fingers crossed.

Thanks for sharing your story.

Ginandtonic31 Tue 19-Jun-18 09:55:03

I think most people it’s about 18 months to get going, ours was complex. Do you know which centre you will be doing it under as I guess their waiting list will impact it too. But of course, it doesn’t always work first time. It was looking rocky last week whether I would even make it to egg collection

ColdCottage Fri 22-Jun-18 16:38:33

Has anyone else been through screening? How long did it take you?

Ginandtonic31 Sat 30-Jun-18 14:02:23

Hi @ColdCottage - have you got anywhere else with your referral?

I had egg collection last week. Unfortunately I only got 4 eggs (think my dose was too low). Three fertilised and 1 has made it to testing. We now have a 3-6 month wait whilst the test is built and to find out if this one is affected or not.

ColdCottage Sun 01-Jul-18 22:40:38

Thanks @Ginandtonic31 we have our appointment with the genetic team 10 July. DS had blood test last week to confirm if it started with him or if it came from us.

I'm sorry you only have 1 egg to test, you only need 1 egg to be ok and implant so I will keep my fingers crossed for you. thanks

Ginandtonic31 Sun 01-Jul-18 23:22:19

Which clinic are you with @ColdCottage?

I’m ok with the one embryo. It is what it is x

Verbena87 Sun 01-Jul-18 23:34:01

We did IVF with PGD to avoid a 50% chance of passing on a genetic condition. Trying to remember about timescales.

I think we had our first appointment with the counsellor to explain the process in 2014. We were already on the list of approved conditions, but I had to gain weight to qualify as my BMI is quite low naturally and it’s quite a narrow range, and referral also took a while.

Egg collection was June 2016 (I think 13 collected, 11 fertilised, 4 made it to 5 day blastocyst which is big enough to biopsy for the gene and we’re frozen). Then they create the specific genetic test based on your DNA, and then test the embryos. We heard back about this in October 2016, and transferred one embryo at the start of December. We were ridiculously lucky to get a successful pregnancy first time: baby is 10 months old.

Feel free to ask if there’s anything I might be able to tell you - can look out my notebook/diaries tomorrow if needed.

ColdCottage Mon 02-Jul-18 17:29:46

Thank you @Verbena87 I appreciate that. Wow that seems a long time frame. Scared I will be too old before they can perform the procedure. I will PM you.

Verbena87 Mon 02-Jul-18 18:02:35

Give me a heads up here if I miss it - not used PMs before.

NanooCov Mon 02-Jul-18 18:24:05

We were offered it after my son was born with an inherited genetic condition but turned it down. But my son's condition - while it presents challenges to him - is not life limiting and is stable. Can't say what decision we would have made had it been otherwise but I do know other parents of children with the same condition as my son that have gone down the PGD route in subsequent pregnancies and I certainly don't think any differently about them because their decision was different to ours.
Second DS did not have the condition in the end.

ColdCottage Mon 02-Jul-18 18:28:26

Thank you. It's so hard as DS is fine now but could be very ill later in life (at any time).

@Verbena87 I've sent you a message. It should email you to tell you too.

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