PGD

[Piano]

PGD

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Hi Guys, I am new to this site, I am just wondering if anyone has any wisdon that they can share with me. I am 30, have been TTC for 2 years, nothing happened so we tested my husband and sperm count and morphology was low and came back suitable for ICSI. Also, It turns out that I have got a genetic condition called Nail Patella Syndrome so it made me think that if my husband has a low sperm count anyway making it highly unlikely that we will conceive naturally according to docs then why not get PGD at the same time so that we prevent my genetic disorder being passed on... We have seen a consultant at hospital this week and they are in the process of testing us and they said that they will look into whether this will be available on NHS,I believe that non life threatening conditions like mine are often not covered (although my condition can cause kidney probs, glaucoma, bent joints, pain etc). What I a hoping for is that even if they can't fund the PGD would they fund the ICSI as my husband has low sperm count and we are eligible for ICSI on NHS as we don't have children already and both 30, has anyone had experience of a situation like this where the NHS have either funded or part funded treatment? Really down and worried as there is no way that we could save up £5000 any time soon to fund it privately and the older I get the less likely that it would work and the odds are already 1 in 5.

 

[maroon]

Hi there
Sorry you find yourself in this tough situation.
I have just started to look into PGD but for different reasons to yourself. We conceive easily but keeping hold of them is my problem. Ive been diagnosed with a balance translocation which means 2 parts of my chromosomes have swapped places. I have around a 50% chance of miscarriage (have had 4 mcs and no children as yet).
Im not sure where you have looked into the pgd? I have contacted Guys hospital in London and explained our situation. They have said because of our history they cannot see a reason why we would not get funding for pgd (although my nhs consultant said we would not get funding). As we have been referred to a genetic cousellor, Guys have said to get them to refer me and DH to them for the PGD then they will apply to my local PCT for funding on our behalf.
I would imagine you would be eligable for the ICSI although think it is a bit of a postcode lottery. Maybe you could try the icsi alone as you may get a healthy baby first?
Not sure if I have been of any help. I know our history is different but there is hope out there for us. Also I have looked at ARGC hospital in London which apparently has much higher ivf results than any other hospital and they do pgd also. However this is a private hospital only.
I would contact Guys if I were you and see if they can give you any advice.
Good luck
Helen
x

 

[Piano]

Hi Maroon, Sorry to hear about your MCs, that must be so hard to go through. I have spoken to a Doctor and am currently undergoing tests at Chester Royal Infirmary, if I am eligible for IVF the consultant said that they can do the PGD at Leeds or Somewhere else, beginning with S, down South, I can't quote remember, it's a bit of a blur as lots to remember. Keep me posted with how you get on, I wish you the best of luck with everything. X

 

[maroon]

Hi Piano
Good luck to you too. They dont do the actual PDG in Leeds although could do the ivf/icsi part there.
There are 2 or 3 hospitals down south I think that do it. Guys being one and ARGC being another (although this one is private). ARGC has the bet ivf rates in the coutry as far as I know.
I think I should be having my genetic counselling appt in Leeds.
X

 

[Curecf]

Hi ladies,

Just thought i'd introduce myself. I had PGD at Guy's Hospital and currently 18+4 weeks pregnant. Very paraniod this time round. (I already have a little girl) but because of what we have gone through to get to this pregnant, I'm just paranoid about everything!

 

[Shona D]

I have done a lot of PGD. I am writing a blog about my experiences if you want to have a read. Google "PGD blog myotonic dystrophy" and it will come up. (I can't post links as I am a new member). The address is apgdblog dot blogspot.

I am on my 6th cycle, having got a baby boy from my third cycle. I am very lucky to have him. If I got pregnant naturally there is a high risk my baby would have been severely disabled.

Curecf, I did my treatment at CRGH. I hear a lot about guys doing PGD though. What are they like?

Maroon, there are a few ways us northerners can do PGD nowadays (though I guess it must depend on what they are testing for). I could have used a satellitel service with my hospital in Sheffield (scans etc in Sheffield but treatment managed by guys or CRGH). I could also have gone to Nottingham (they send the embryos to America for the PGD I believe). I stuck with CRGH in London just because I have had a successful pregnancy with them in the past.

Piano, there is a post on my blog about cutting the costs of IVF. Shame I can't post the link, you'll have to look in the blog archive to find it. Hopefully you will get funding for the PGD too though. If they say no you could appeal and stress the point that PGD only costs X amount on top of the IVF anyway but it could save way more in future NHS bills as your baby will be healthy. A poorly baby costs the NHS money. It sounds mean equating it all to money, but I think that is a good way to argue for funding.

Shona

 

[daisy12]

Hi Piano, how did you get on with getting your funding for PGD? I also have the exact same genetic condition as you & in the exact same dilemma..Kind Regards