Here's To A Boring Year

Too much excitement just might kill me!

More babies: the decider

Anyone who has read my recent(ish) posts will know that we’ve been ummming and ahhing about a possible baby #2. If I weren’t infertile we may well have a second already, without so much consideration. What can I say, I like to over-think things!

But it turns out that this may be a blessing in disguise.

This weekend, I spoke to Google MD about the genetics of neuroblastoma (Monkey’s cancer). I couldn’t tell you why it has taken me this long to look it up, but it has.

It turns out that only 1-2% of neuroblastoma are familial, and they attribute most of that to a heritable ALK gene.

Which means the majority of neuroblastoma is a somatic mutation – except we now know that Hubs had a cousin who died from neuroblastoma.

She would be a fourth degree relation to Monkey, and we feel that the likelihood of the two being random coincidental mutations is small. I have found studies which have used fourth degree relative pairings when identifying the genes involved, so it seems to be significant at that level.

The gene in question is autosomal dominant, so assuming Hubs is carrying it, there would be a 50% chance of it being passed on to a child. And anyone with the gene has a 50-60% chance of developing neuroblastoma (we’re not talking increased risk, we’re talking straight up odds). Correct me if I’m wrong, but I work that out to mean that we have almost a 1 in 3 chance of having another child with neuroblastoma.

To which I say – oh my hell no.

It would be totally unfair for us to take that kind of risk for a future child. No child should go through what these kids go through. We got lucky this time that Monkey’s treatment was mild and successful, but the genetics do not determine how severe the disease will be.

However, I’ve learned from other mums that the test for this gene is not available in Australia – if we wanted to have Hubs tested it would have to be sent to the US, and we have no idea of the cost involved.

I admit I’m not a geneticist, and we will be going to the hospital for genetic counseling when we can get an appointment (probably in a few months), in particular so we can pass on relevant information to Hubs’ brothers who have yet to procreate. But even if they shock me by telling us they don’t think we’re at increased risk, I don’t think we’ll believe it. I would only think that there is some other genetic factor they just haven’t identified yet.

So we are for sure done. We were wavering anyway, flip-flopping between lifestyle, guilt, infertility, finances, and dread, but this is the totally concrete and utterly justifiable reason that we shouldn’t have to need, but somehow kept searching for, that will allow us to close the chapter on the baby-having part of our lives and let us move on to the miracle-child loving part.

I feel relieved to have closure and to know that I really cannot change my mind any more. And I kind of feel horrible for trying to get pregnant before knowing this. So irresponsible.

Also, if anyone out there happens to be a genetic counselor, please jump in on this one!


12 comments on “More babies: the decider

  1. larva225
    June 17, 2014

    I have nothing useful to offer but I so admire you. You’ve put your would-be child first, despite the fact that it has to break your heart a bit. I have a colleague who is throwing everything she has at her infertility, despite the fact her husband has a brother with Fragile X (and thereby a much greater chance of passing on a pretty intense disability). While I feel badly for her, it’s so selfish to completely disregard such a risk.

    • boringyear
      June 17, 2014

      Yikes. I get that some people get so obsessed with the infertility journey that they forget to think about much beyond getting pregnant, but I kind of feel like that is cruel and irresponsible, when you are aware of such possibilities.

      In her case I feel like they should look at donor sperm or PGD if it is available.

      How will she feel if she does finally get pregnant, only to spend the rest of her life dedicated to the care of a severely disabling child?

  2. cookie1986
    June 17, 2014

    My husband carries the BRCA2 gene…think Angelina Jolie. We didn’t find out until after Destroyer was born, and i was pregnant with my Buddy. Each one of the kids has a 50% chance of inheriting the gene. If she has it, she has an 80% chance of getting breast cancer with no preventative measures. 80%! And a 30% chance of ovarian cancer. He would have I think a 30% chance of prostrate cancer.
    I feel sick when I think about this stuff.
    So I get you.
    The “good” news over here is that some of his cousins have or will undergo preventative masectomies and reconstructive surgery to prevent the illness. The other “good” news, is that they know what to watch, and their doctors are very much on board with preventative medicine.
    But then I think about my babes, and I want to curl up in a ball and cry.

    My only other thought is whether you had considered a sperm donor or adoption?
    Siblings are a good thing. 🙂

    • boringyear
      June 17, 2014

      Oh my word. I’m sorry, that must be very hard! Hopefully by the time your kids need to worry about it our medical technology will be all over it – there are some very exciting cancer treatments in development at the moment.

      Hubs and I had already decided we’ve had enough of spending money trying to make babies, so no donors or adoption. Fertility treatments are expensive and exhausting and even with them I suck at getting pregnant. Possibly we would have tried those options if we had no child, but we feel very lucky to have the one we do, and we’re not willing to go there for a second.

    • boringyear
      June 17, 2014

      Also… If you’d known about the genetics before you got pregnant, would you have gone a different route?

      • cookie1986
        June 17, 2014

        I don’t think I can answer that for certain. Now that I see my babes, I can’t imagine them looking any different. But likely. We had already discussed alternative methods because we tried for 18 months to get pregnant the first time, and thought maybe there was a problem.
        Also, I’m adopted, so that wasn’t out of the question either, although I desperately wanted to experience pregnancy.
        We haven’t entirely ruled out a third baby either. Every family has something terrible they pass on genetically to their children, and there is always some sort of risk. We just happen to know specifically what ours is.

      • boringyear
        June 17, 2014

        And fortunately there are fairly effective (if extreme) preventative measures for those with this gene, and it will be decades before it is likely to affect them.

        Neuroblastoma is most commonly diagnosed before age 5, and familial neuroblastoma on the early side (Monkey was 1). And it has a 1 in 2 mortality rate.

        So tricky.

      • cookie1986
        June 17, 2014

        Rest easy, my Aussie friend. Your decision is sound, and full of love.

      • boringyear
        June 17, 2014

        Thank you. Apparently I am still feeling a little defensive.

  3. Melissa @ HerGreenLife
    June 17, 2014

    Wow, that’s a lot of tough stuff you’ve faced and that you factored into your decision. While stopping at one was not our original plan, there are many advantages.

    My guess is that one-child families will become more common, at least in countries like the U.S., where the cost of having children is relatively high, and our laws and employers’ policies really don’t support having/raising children.

  4. pepibebe
    June 18, 2014

    I totally agree with cookie1986 – you’ve made a carefully considered loving decision that sounds like it is the right one for your family. X

  5. pajamamommas
    June 20, 2014

    Wow, that sounds like a complicated and difficult decision. But it also sounds like a relief to have made a decision. I know we waffled for a while about one versus two kids, and that kind of pondering can take a huge amount of time and energy. So yay for being able to direct that time and energy into other things like–like hanging out with the fabulous Monkey!

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This entry was posted on June 17, 2014 by in baby talk, brain fry, cancer, missing eggs and tagged , , , .


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