PGD IVF

[Sunisshining12]

Hi. I’m looking for recommendations for clinics that offer IVF with PGD. Preferably the more reasonably priced! with good success rates.

We have a disabled daughter who has respiratory issues, feeding tube, can’t walk etc. But she only has slightly delayed intellect & think she would love the company of a sibling. She was recently diagnosed with a rare genetic condition that both my husband & I are carriers are of (we had no idea). So this now means there is a 1 in 4 chance another child would be affected as it’s a recessive condition. Obviously our daughter was an unlucky 1 in 4.

We don’t have known fertility issues (have conceived naturally twice - one mmc, one daughter). 30s, non smokers & healthy bmi.

I understand we can be referred on nhs. But what puts me off is the long waiting times for appts, and again if the cycle fails. And they would need to apply for a license for this particular genetic condition as it’s not yet been used. The nhs success rates of a live birth are 30-35%, that doesn’t seem great? Was also told they will only implant 1 embryo. Not 2 or 3. Maybe that is why the nhs rate is lower? I would prefer 2 to be implanted. I may be mad but I would be thrilled with a single baby or twins! Do private clinics plant more?

Anyway, just trying to learn all that it entails. Thanks

Also timeframes I would say around 6-9 months

Genetic counselling and reports analysed
PGD and IVF consultation
DNA samples from relevant family members
HFEA application can then take around 3-6 months

IVF cycle commences
Blastocysts biopsied
Results back in 2-3 weeks
Review appointment
Frozen embryo replacement if unaffected embryos

Your delay is going to be the PGD. I’m guessing that bit is going to be NHS funded? How far along is that process?
Without that, we looked at the two local clinics and went with the one with the shorter waits, paid around £11k for a 3 attempt package (egg harvest, fresh transfer, 2 frozen transfers) drugs are extra, paid around £1k for those so far I think. Fairly short waits, weeks to a month once you are ready to go.

Sorry should say there have been some extra costs for bloods tests etc few hundred quid. Some people get the NHS to pay for those but I’ve not been as think this is a private healthcare matter for us not for the tax payers!

I have a price list I can send you from a clinic in London so you could work it all out. There was no wait time there at all but I wasn't having PGD.

Thanks! Monkey girl - I don’t think it will be NHS funded at all if we decide to go down the private route. Can the private clinics apply for the license? It is a single gene mutation. We were told to expect a wait of around 2 years before treatment could commence on NHS.

Am I understanding this correctly? IVF really scares me the more I read about it. But so does the thought of having to have a termination.

Today my in laws said we must be absolutely bonkers to even think about having another child, knowing ‘it could be like that.’

I really hate how judgemental people are. Yes I have a child. Yes I’m super lucky I have a child. But I’m also super unlucky that she was born with such severe needs. I wouldn’t wish this life for anyone, some days are really really hard. Id just like her to experience the company & companionship of a sibling. And id like to experience what having a typical child is like. I’m doing it again, justifying myself!

Going round in circles wondering, sod it, try naturally and cross ‘that’ bridge if it comes.. or be prepared for the worst and be responsible, go straight to ivf. I don’t know

I’m in no position to judge but I wonder what it is like to have a fairly disabled sibling in terms of childhood opportunity experienced. Maybe there’s somewhere else you can find out a bit about that

Plus I think you first really need to drill down about who can and will apply for the PGD licence you need. I can’t imagine many businesses (which is what fertility clinics are) will carry research licences and whatever else might be needed - I don’t know, but you should ask that at this early point to get yourself clear

Does your area not fund you to have treatment at a private clinic? Lots do.

IVF really scares me the more I read about it. But so does the thought of having to have a termination.

I've had both. IVF is a walk in the park in comparison. I was so worried about how difficult IVF would be and there was no need.

Leeds now do PGD too xx

I appreciate that this is an old post but I wanted to let you know Sunisshining12 I am going through the same dilemma!

I am a carrier of a genetic condition haemophilia, which means I have a one in four chance of conceiving a child with the condition if conceived naturally.

I have a son already, without the condition (he was one of the lucky ones) however I do not want to take the risk on our second. I have family members with the condition and it's a challenging life.

I am in the process of applying for a genetic counselling session, but my worry is whether i would be accepted funding on the NHS.

@hannibanan1
Unfortunately according to the NHS PGD policy you are not eligible if you have a living child already.

I could rant about the unfairness of this for hours. And I'm not sure if the policy is set in stone so definitely push for getting help.

Surely anyone with half a brain can see its better for the NHS to pay for one round of IVF with PGD than take a high risk of a child being born with a quite serious health condition?

i share the same opinion - Surely it would also save the NHS so much money as a child with this condition would cost the NHS around £50,000 a year for the rest of it's life.

Thank you for your response. The more I learn about it, the more i realize there is an unlikely chance of getting the funding x

I've been categorically told on several occasions that the policy is everyone has a right to have a 'normal' (their words not mine) child so anyone who has and a child not affected by a genetic condition is not entitled - my condition has a 50/50 chance of being passed on and we had to have a TFMR last Christmas due to the baby being affected - we have a healthy DD so we are not entitled to PGD- if she was born with the condition we would be entitled to funding surely it would cost the NHS more tho as this condition (should the baby survive) would need lots of hospital care and the baby would have a very poor quality of life!!

I know this thread dates back to late last year, but if anyone is still active on it, I’d be really interested to know up to date experiences of Guy’s for PGD - or any private clinics (we have been looking at ARGC)? My baby daughter has been diagnosed with a blood disorder and we need PGD with HLA typing for our next baby. We’ve been thrown so many curveballs by our first experience of parenthood and it’s been a very difficult time, so keen to go with the best centre for this treatment - also keen to avoid long and frustrating wait times, which as I understand it is the norm! Advice welcome. Thanks in advance everyone xx

I've been with Guys via a Satellite clinic (Sheffield) and I can't fault either of them. It took a long time for us to get to where we are - currently 12 weeks pregnant and first asked our GP to refer us in 2014 - but so far I'm pleased with the service. Time will tell if the test worked but we've been told our test is 99.9% accurate.