PGD IVF

[Shay93]

Hi everyone (Completely new to Mumsnet) Myself and my partner lost our little boy in May this year at just 2 weeks old, he was born with a rare condition called Nonketotic-hyperglycemi ( roughly 1 in 60,000).. this was never picked up throughout my whole pregnancy.

Genetics have now confirmed the condition that our son had through genetic testing both myself, my partner and our son. On the letter sent by genetics it says that this will have relevance for any pregnancies in the future so therefore I can only assume that myself and my partner must both carry the gene.

We have an appointment with genetics at the end of next month to discuss further. I am 30 with no other children, my son was my first born.. I miss him terribly every single day, I long to hold him and I am terrified that I may never be able to have anymore children.. I could never replace my son but I do want to have a baby in the near future before it's too late for me.

I've done a lot of research regarding possible options for the future and it seems our only safe option would be to have PGD IVF however my partner already has a child from a previous relationship and I'm worried this may affect our chances in regards to NHS funding?
I know PGD IVF is not cheap if you go private, I've read it can be around 12K, money we don't have.

Has anyone been through similar?.. can anyone give us advice on the guidelines for funding through the NHS? and also does anyone know if this is something genetics will discuss with us at the appointment please?

TIA ☺️

Hello! Before I reply fully can I check that PGD is the same as PGTA. If it is I can tell you how I got on with it xx

mft.nhs.uk/app/uploads/sites/4/2023/01/SMPIL-23-001-Pre-implantation-Genetic-Testing.pdf

I'm based in Manchester: this is current info from MFT if i'm on the right lines of what you're thinking xx

Sorry, I'm very new to reading about it all so may have my wires crossed slightly but it's pre implantation genetic testing I believe? Thank you 😊

So sorry for your loss. I can't advise re the testing but funding is specific to your local area. If you Google search it you will be able to find what their criteria are for IVF NHS funding. Some will fund if you don't have a child yourself, others count the child of a partner as this and therefore won't fund. It's a total lottery unfortunately.

Thank you. I've tried reading as much as possible but there's so much information and it's all different.. I'm in Nottinghamshire so not sure where I stand with it all.. I think the criteria may be different to IVF from what I've read but I may be wrong. Thank you for your help 😊

I sent seven embryos for genetic testing last year, due to my age (42). Three came back as normal. This was part of private IVF treatment.

£2450 for the testing itself plus £300 per embryo tested x

Where was this done at please? Has the process taken a long time for you?

This is the other worry I have about the NHS because I read that it can take years.. xx

Hi
So sorry to hear about your loss ❤️

We are going through PGT-M which I think is what you would be doing (testing for a specific genetic condition) It's worth checking on the HFEA website to see whether the condition you mention is on their 'approved' list for testing.

At your genetic appointment they should let you know what your chances are of passing on the condition. For us, although I'm the only carrier, it's 50%.

It does take a bit of time for the lab to create the genetic test (3 months I think) as it's unique to you and your partner and then we had about a 3 week wait for test results after embryos were biopsied.

We are private and a different NHS area so I can't help with that I'm afraid. We were told initially to expect costs around £20k for private though we're on round 3 now and have exceeded that.

Hope that helps a bit x

At CARE in Manchester. Which process exactly?

After egg retrieval, any of my fertilised embryos that got to day five (blastocyst stage) were sent for testing. I sent seven off and three can back normal. Testing took two weeks.

Private is always massively quicker and for me was much better. I had one round with the nhs which was a shit show. Many others have a great nhs experience. I didn't x

Hello, thank you ❤️

I've just checked and it does say approved.
I believe it's a 1 in 4 chance but I don't ever want to take the risk naturally.. I could never go through that again and I would never want to put a baby through that again either.. my doctor did mention getting pregnant naturally and then having a termination further down the line if needed after test but again I could never do that.

That sounds pretty quick, I appreciate it can't happen over night but a few months wait as apposed to a few years makes a massive difference.. we could never afford 20k😞

Good luck on your journey, I wish you all the best!! ❤️

I'll take a look at them, thank you. I'm guessing it's called PGT-M what we would need?

I read that same in regards to the difference between private and the NHS. We don't have the money to do it privately unfortunately but I could certainly try and raise the funds if it means a quicker and better experience.. I really don't want to wait years.

Thank you! Xx

@Shay93 I’m so sorry for what you’ve been through a losing your child.

Yes, it’s PGT-M that you need, I’ve been through it for a different condition. I read that your condition is autosominal recessive so future children would have to inherit the gene from both of you to be affected, so 25% chance. If you have an appointment lined up with a genetic counsellor already, they will refer you for PGT-M. My BIGGEST piece of advice, assuming the situation is the same as when I started treatment, is that if they refer you to an NHS hospital, point out that you’d prefer to be referred to a local private one (NHS funded). Though I’m based in Notts, the genetic counsellor referred me to Guys in London, with satellite care in Sheffield. The waiting time from being referred to starting treatment was around 1.5 years, not to mention the time consuming and costly logistics during treatment. I found out later on that I could l’ve been referred to Care in Nottingham where the wait time was a matter of weeks. I transferred to Care after my first unsuccessful cycle (had three funded). The SECOND BIGGEST reason for going to a private clinic is that they will likely do PGT-A alongside the PGT-M, which significantly increases the chances of success on an embryo transfer basis ( you are young so maybe not be as significant a factor as for me but I still wholeheartedly recommend it to save time and avoid possible failed FETs due to aneuploidy). I was so angry at being ill advised by the genetic counsellor. It wasted two precious years and caused additional stress and heartache. My SIL went through similar treatment in a different Trust and was eligible for three cycles despite her partner already having a child.

Wishing you all the best and so sorry again for your loss ❤️

Thank you so much. Yes I've read 1 in 4 chance so 25%.. we have an appointment with genetics at Nottingham city hospital so fingers crossed they can give us some positive news, I just worry with my partner already having children that they won't fund it and then I will be devastated if I'm honest.

So they can refer you to a private clinic and still be NHS funded? That good to know thank you again. I'm sorry you had to go through all of that stress, I hope everything worked out for you well in the end?❤️