Monday, 23 June 2014

More parental and HD stress

I'd put off seeing the genetic specialist who'd already seen my sisters. I just couldn't face another appointment, got sucked into other things, kept telling myself it'd be ok.

But my thoughts have been turning to another IVF round and I thought I better find out what exactly the score was with being a donor, recieving eggs, embryo testing and so on.

A lot of what I'd been considering was - and I realise this is going to sound stupid - based on what my parents told me. That although my sisters and I were at risk of carrying HD, it'd only manifest itself in our late 70s, and take another 20 years to kill us. And that, if we were carriers, and our children also inherited the gene, they would get it at the same age we did.

Except, that turns out to be only half right. While my Dad has a mild form of HD, HD is more likely to become stronger if you inherit it from your father than your mother. So if one of us does carry it, it could appear in our 40s.

Which obviously means doing an egg share is a complete non starter.

Things then got a bit frustrating with the genetics man, who I think already thought I was weird; admittedly, years of infertility does change your boundaries when it comes to fertility treatment.

I asked if we could get pre-implantation genetic diagnosis (ie, the embryos get scanned for HD before being transferred).

He said we couldn't in the UK as we already had a child. He said we couldn't. I thought he meant on the NHS, as it is very rare for health boards here to fund someone who already had a child.

I thought this was kind of bizarre, and so asked if we could get PGD privately. He said no, "they" thought it would be unfair if one child had been cleared but not the other.

I then asked about getting it abroad. The guy looked a bit weirded out and waved his arms, saying it would be very expensive and difficult to get (which, frankly, seemed a bit odd; I've read enough about IVF to realise that some countries have very liberal laws about donations and screening).

I can do a test that, if I don't have HD, would clear me to go down the original egg sharing route.

If I do have HD I can find out, practically to the year, when it will onset. Which means I'll roughly find out when I will die, too.

I'm not really sure what to do. In some ways, if I was going to have it at 40, then I'd rather know now so I could get around to writing my novel, stop spending on a pension and try to enjoy life more. I could practically advance book my ticket to Switzerland to be euthanised (if I do have it, I'm fucked if I'm hanging around until the bitter end, choking on cranberry juice in a home somewhere, smelling of wee).

But then, I'm not sure how I'd cope with having the certainty of  HD. Depending on how strong the gene is, it becomes problematic to buy a house as nobody wants to lend money to someone who isn't going to be around in 25 years.

Perhaps most importantly, if I get the test and know, then the Boy will know he has a 50:50 chance. At the moment he has a 25% chance of having HD, and I feel those odds are more comforting.

Having thought about it and done some light research, it appears that the genetics man wasn't entirely familiar with IVF abroad; I've found clinics where IVF with PGD can be done for less than a regular cycle here.

 I think I'm inclined to want to do a PGD cycle abroad, which would eliminate HD, although I don't think I'd want to know if I was a carrier.

I think my husband thinks it would make sense for me to get tested before we do that, which could bring the egg sharing option back into play.

I might need to try and get some expert advice from somewhere - I think the genetics people probably aren't too familiar with IVF, but my normal sources of infertility information don't have much on genetics.


  1. The 'you already have a child therefore no PGD' argument sounds false to me. Say you already had 6 children, then most likely some could have the gene, some not.
    Then again, doing a round of PGD-IVF and not wanting to know the result, I'm not sure if that is possible. I think I had to sign consent to learning about certain test results. And you would notice if half of your embryos would be deemed abnormal. You would be worried about yourself, but it could be something else.
    Sorry, bit of brain fog. You are already worried about yourself. (and for The Boy)
    Our donor was tested for CF (and wasn't a carrier). Then, Suzy was tested for CF. It was part of normal newborn testing of 17 (treatable) illnesses, so I couldn't opt out. But yes, had to sign that we would be informed. And possibly learn that DP would be a carrier and his boys at hypothetical risk. (And I only now realise I don't even know if the boys were tested or not)

    So sorry this is so complicated and stressful. maybe going to Mels bloglist and searching for PGD can help shed some light on some genetic aspects?
    I'm sure I read a blogpost from someone with advice on oh, oops, sorry, is on *your* sidebar.
    I'll shut up now.
    Thinking of you.

    1. I think the difference is that the NHS here will provide funding for IVF and PDG if you have no children, but don't appear to do anything about second children, and Angela's blog is about a first child.

      I can't find any privately funded clinics near here that do PGD (in fact, I have a feeling there only is one NHS clinic that does it, which is miles away).

      It looks like a clinic abroad might be our best bet.

      One of the other future planning things I have is that if I and the Boy both have it then I think it makes sense to make sure there's another sibling that doesn't. But I haven't thought all that out in my head yet.

  2. I thought I wrote a long comment on this yesterday. Did it disappear?

    1. OK, so that comment appeared straight away, so my response yesterday must have been lost somehow.

      Whether to be tested or not is such a difficult decision, and to have your decision complicated by wanting to do the best for the Boy is just too cruel. My niece has cystic fibrosis, and will grow up knowing her diagnosis (she's always at hospital now so she can't miss it) and her prognosis. It'll be something she'll always know and live with, which is different to living a "normal" life (whatever that is) and fearing or knowing a particular outcome. And I didn't find out that Alzheimer's was in my family (my mother chose not to tell us) till I was in my 40s, and she was already showing symptoms. I was furious that I didn't know earlier. Yet what I would have done with that knowledge I don't know. And I don't know if I will get it either, so really, as I write this, I realise I'm being no help whatsoever. Just trying to relate to what you're going through.

      Doing PGD sounds entirely sensible. I can't believe that the genetics guy doesn't have all the info and hasn't thought it through, because IVF and PGD would be an issue/option for anyone with an HD diagnosis these days, I would think.

      Hoping the decision making isn't too difficult. Sending hugs.

  3. PGD sounds like the ideal to me. I know we were thinking of doing just that with our last IVF but having only one embryo to transfer we opted to not, of course that cycle didn't work and we moved on to donor eggs.