Request for help

(this might be confusing, but I will try my best to explain it all so that I get the right information!)

My SIL has lupus. This branch of the family also has spherocytosis, a hereditary blood disorder. While Aaron’s wasn’t too severe, SIL’s was. They have both had their spleens removed. It does not skip generations, so none of our grandchildren will have it…but there’s a 50% chance that SIL’S children will be born with it.

Many moons ago, before they ever met, my BIL had a vasectomy done. He wasn’t planning on getting married again (I think he has 2 ex-wives), I don’t think, and didn’t want more children. Then he met my SIL, they fell in love, got married…and eventually started discussing children.

They asked me if it was possible. I explained treatments to them. So far as I can tell, since he still produces sperm, they should be able to go in and…aspirate? it. Remove it, at any rate, and mix it in a petri dish or do the “turkey baster” option for them. Their odds are as good as anyone else who does treatment, maybe better, depending on egg quality and all that fun stuff.

Only…my SIL is scared of pregnancy with Lupus. Family is telling her that because she has Lupus, she “just shouldn’t try”. I call BS on that, so long as her doctor approves. It’s THEIR decision, not that of family. My MIL is all “you’re more important that grandchildren”.  (The same MIL who, before I had The Boy once told my SIL that she was “never going to get to have grandchildren because BIL had a vasectomy and (Jen) is infertile”. In a lamenting, guilt-tripping tone. Not to my face, because I’d have had WORDS, but SIL told me.) She’s scared of how hard it’s going to be, what having both Lupus and sphero is going to do to her AND the baby. What their chances are of doing treatments are, and what treatments alone would be like with the lupus. I’m afraid I can’t help her, because I don’t have lupus. My fibro got BETTER while I was pregnant, and I know that lupus can too, but…I really can’t help. I know there are bloggers out there with lupus who might be able to help better…and some of you have blood disorders too. Is there anyone with BOTH who might be able to help? She says “If I knew anybody with something deadly like lupus with something that can cause problems like spherocytosis AND with somebody who can’t give them children even though they want to, I’d ask them for advice…but I don’t”.

So, bloggers, can you help her? We’re not just looking at the lupus/blood disorder, we are also looking at the vasectomy.

She’s also having problems with the “no one understands” blues (and I told her no one truly could, because this was her journey, but we can help) and the “the questions just keep coming and they are so personal” issues that we all come up against. Unlike me, she won’t be rude and either 1) tell them it’s none of their business what her reproductive state/desires are or 2) tell them EXACTLY why she doesn’t have children. (I was fond of the latter, saying “my husband has funky sperm” which USUALLY shut them up.) I told her to arm herself with facts, because she’s going to have those who are all “you should just adopt” or “you should just do foster care” and seriously, hurtful, AND expensive. You don’t “just” do those things. I armed myself with facts and educated every idiot who said those things – I figure, if I’m going to have to have that discussion, at least I can maybe help someone else not have to go through it! But she’s not me. Have you any other suggestions for her on how to deal with the people who are all “why don’t you have babies yet?? OMG what is WRONG with you that you hate kids??” that we ALL come across?

Thank you in advance, bloggy friends. I’m at a loss as to how to help her any more than I already have, because I’m NOT in her boat. She needs help getting off the island!

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11 Comments

  1. Do you know Belle at scrambled-eggs.org? She may have some words of wisdom.

    Reply
  2. I suggest she have a preconception visit with a high-risk OB. That’s what I did. With any autoimmunity, my HROB told me there is a 1/3 chance it will worsen, 1/3 that it will stay the same, and 1/3 that it will be better. The only problem is there is NO predicting how you will be affected. My neuro symptoms improved but I also developed arthritis while pregnant with #2. And here I am, getting sicker every month since I had my daughter. There are antibodies that should be tested prior to pregnancy. Anti-Ro, Anti-La, and antiphospholipids. The first 2 can result in neonatal lupus, or heart block (requiring a pacemaker to be put in the newborn). The third may require daily heparin injections during pregnancy.

    Reply
  3. Over from LFCA…

    I don’t have lupus, but my husband does have hereditary spherocytosis (HS), as does his mother (he has it much worse than his mother, and had his spleen removed at age 8, whereas his mother was well into adulthood before needing to have hers removed).

    So when we were looking at IVF/ICSI, we did a little exploration of potential issues with HS and whether we should do PGD. I joined a message board for people with spherocytosis, and asked about pregnancy and HS (I was mostly asking about whether, if given the option, people would have chosen to select embryos that did not have HS, but I got a *lot* of responses from women with HS themselves who talked about their child-bearing decisions…). Most of the responses I got basically said that there weren’t any direct complications with their pregnancy that had to do with the HS, and that they mostly weren’t terribly concerned about passing it on to offspring (a couple of women said that if they were going through IVF anyway and it wasn’t too much more expensive, that they would do testing to select for embryos that did not have HS, but mostly just because they themselves had had a pretty severe form of it and wouldn’t want to pass it on to children if they could avoid it, though both were adamant that they would never terminate a pregnancy were they to find out that their child was going to be affected by HS– basically, it was bad enough that if they could avoid it, they would, but not anywhere near bad enough that they felt that they should eliminate potential suffering altogether, if that makes any sense…).

    Anyhow, as it turns out, I had twin boys from that cycle, and at 1 year old, we had them tested for HS, and neither one has it. So, yes. Chances are 50/50, but in our case, we seemed to have beaten those odds!

    Reply
    • Thank you! I know her worries are more towards the lupus/vasectomy issue, but having information on the sphero helps too. Her brother (my husband) didn’t have it too bad, but she did – both had their spleens removed, as did their mother and her siblings.

      Reply
  4. Alexicographer

     /  July 8, 2012

    Here from LFCA. I am zero help on either the lupus or the blood issue but do have a DS with my DH, who had had a vasectomy years before I met him. We tried a reversal, that didn’t work, and then did IVF + ICSI — I regret needing to let you (and your SIL) know that it is not as simple as “just” aspirating the sperm b/c (as I understand it) the vasectomy basically cuts off their development before they get the tail/ability to penetrate an egg. So they are usable, but only with ICSI. We had to do IVF a bunch of times (I did 6 cycles; DS was my only pregnancy, that was cycle 4) but that probably reflects my own issues (high FSH, poor responder), not the general experience of post-vasectomy conception.

    The sperm can be aspirated (and that may be a good choice) but we had DH’s extracted and cryopreserved at the same time we tried for a reversal. If a reversal is attempted, I’d strongly recommend doing that (getting the stuff and freezing it) as for us, at least, that was a big money saver (plus less traumatic for DH compared to reversal + multiple aspirations — and yes, we did get 6 straws saved though in retrospect I wish we’d had more: notice I did 6 IVFs and my one kid was conceived on IVF #4 and you can pretty much see why).

    That said, we tried the reversal and then waited 18 months (as recommended) to see if it worked and if I had it to do over again, the other thing I would do — given that DH never once had any results to suggest that the reversal had worked in the slightest bit — is not wait that long, and just jump straight to IVF after maybe 6 months post-reversal. Oh well. Anyway, you’re welcome to give your SIL my email.

    This stuff stinks and I’m sorry she’s dealing with it.

    Reply
    • This is what I’m trying to find for her – thank you for chiming in! ICSI is something I have no experience with, nor is trying to get pregnant after a vas. I can only help so much before running into a wall, and while I’ve heard of ICSI, I have no idea what it actually does. Now I have a slightly better idea, so you’ve educated TWO people!

      Reply
  5. Amanda

     /  July 9, 2012

    Thank you guys all so much for the information. While my huge concerns are for the Lupus and the vasectomy, all information is useful and I thank you for any knowledge. 🙂

    Reply
  6. Alexicographer

     /  July 11, 2012

    @Tigger just to follow up, ICSI involves the RE selecting 1 sperm and injecting it into the egg (harvested through IVF of course). So basically it circumvents clueless and/or disabled sperm problems (at a $$$ cost of course). Happily where it’s used post-vasectomy it works great with few or no downsides (other than the extra $$$ involved, though it’s not a huge extra cost relative to what IVF already costs — but of course it adds up). As I recall, and it’s been awhile since I looked any of this up, there’s some evidence that, used for other stuff (congenital male issues) it can, perhaps unsurprisingly, lead to those issues getting passed to the next generation (if male). So my hope is that for those of us using it post-vasectomy and having sons, it will just produce males willing to accept responsibility for their own reproductive health (and actions), which seems a good (though unlikely to be congenital!) trait to pass on.

    Reply
  7. Jo

     /  July 13, 2012

    I have lupus… husband had a vas reversal.
    Took 2 tries, and have one healthy boy, now 7. 🙂
    I was not diagnosed until after I had the baby. But I was told that if I was to try again, I would be monitored closer and also be on heparin(?)
    My husbands reversal was successful after 5 years and we were able to do ivf with icsi. ICSI was the only way he would do IVF with me. As mentioned before, vas can mess with the sperm, and the dr can control what gets fertilized more or less.We also did a sperm test on him. It wasn’t covered under insurance, but told us that his sperm were still viable and we could use them..
    I also have pcos and was underweight. Metformin, Southbeach diet, husband taking extra vitamin supplements all contributed to our success.

    Make sure the drs know and do all and any pre testing you can.
    It can work. and it does. 🙂

    Reply

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