Thinking about consequences of XMRV and children

[Katie]

Me and my husband both have ME/CFS and have no children. Whilst most of the XMRV news has been welcome (in that weird conflicted way that most of us are feeling) we've been talking a lot about the potential risks to our future children if both of us have active, or even non-active, XMRV infections.

Dr Peterson spoke about twins with Childhood Alzheimers with active XMRV and both of their parents have antibodies to XMRV. Also, the XMRV connection to autism and various kinds of cancer, as well as plain old XAND. With us both having XMRV (potentially) what do we need to consider before deciding to have or not have biological children? Will we definately pass it on?

The only PWME I know with children have reasonably healthy partners as far as I know, blood tests may show otherwise later on down the line, but their children are healthy so far. I have no frame of reference for even one healthy child born to potentially XMRV positive parents.

I know this post is littered with 'what ifs...' but I wondered if anyone else was facing the same potential situation and how they felt about it.

 

[anne]

Katie, my husband and I have it too, though I am currently healthy. We had a chikd before my husband got ill. We would certainly do it all over again if we good, but we are watching the developments very carefully.

 

[fresh_eyes]

Hi Katie. Thanks for posting on this topic. I've been lurking around here for a while but you inspired me to finally register & post.

I've had ME/CFS (or, you know, a mystery flu-that-never-went-away) for 5.5 years. Just before I got sick, at age 33, my husband and I were talking about having children. In the years since, I've felt that it was just an impossible proposition, between my erratic hormones, our financial precariousness, no health insurance and little chance of getting any, and of course my general illness & exhaustion. This September, when I turned 39, the issue started to feel extremely urgent. And then, just weeks later, came the XMRV announcement, which gave my fears a whole other dimension, the chance of transmitting god-knows-what to any potential baby. At this point the scales are tilting strongly toward no children; while I'm hopeful (for the first time) that treatment is coming, I doubt it will be here before that door is closed for me. It's a difficult and emotional time. If you'd care to share more about your situation, I'd be happy to hear it.

anne, I've read the basics of your story elsewhere on these boards; thank you for sharing it. Before the XMRV thing, I hadn't really considered the possibility of passing this on to my husband, just because he's stayed well up to now. Your situation has been much on my mind. I'd be interested to know the time frame of your husband's illness (ie how long has he been sick, and how long were you sick before he came down with it).

Thanks for putting yourselves out there, it's appreciated.

 

[Alice Band]

We had miscarriage after miscarriage (and years of infertility investigation/treatment as well) so this is a very sore topic for me.

It's now too late for me to have any children and adoption in my country is very restricted.

It may be that if this virus does prove to be a cause that it will be tested for before infertility treatment is given. I had to have yearly HIV tests. This will certainly make things harder and it's difficult to know exactly what it will mean.

We don't know enough about transmission. Also what effect having the virus will make to our own fertility and things like repeat miscarriage.

Will people with this virus be considered as adoptive parents and how will transmission affect our reproductive life.

A very hard area indeed.

 

[Kati]

Just a thought, when pregnant women with HIV, given antiretrovirals have their transmission rate greatly reduced compared to no antiretrovirals.

Now it doesn't really help too much I think because HIV is a "fast" retrovirus and XMRV is "slow".

I am impatient to know have research unvail more, and I am sure that families in reproductive age want to know, especially if the clock is ticking.

 

[Katie]

Thanks everyone for your input, I'm glad I'm not the only one worrying but I wish this wasn't something to consider for any of us. Fertility is a difficult subject for healthy or traditional lifestyle people, I've never really considered my own in any great detail. My husband and I discussed it early in our relationship when Dr Kerr's research about gene expression came to the fore. We always knew being childless was on the table, but now it seems so much more real.

I've had ME since the age of 12 after a rubella vaccination and glandular fever within three months of each other. I had always had bad reactions to vaccinations so I was made exempt for many years, I wonder if I was born with XMRV. Ironically I chose to have rubella to protect my future fertility. I've been battling ME/CFS at various levels since then from 0% to about 80% at my highest. I'm currently in a relapse after finishing my first triumphant year at university. ME won the battle for year two, I'll be back though.

My husband has had ME since he was 10, he's 33 now so having children is more on his mind as like many men he doesn't want to be an old dad. We live next door to our young niece and my pregnant sister-in-law, so children and babies are always the number one subject.

We were planning to have children when I finished uni providing we were both only moderately effected. We've got a great support network and had made plans for what we'd do if we got ill as well as all the little things like what our ideas on discipline were, diet, schooling, manners and names. Like you Alice Band we live in the UK, I'm pessimistic about our chances of adoption here unless a lot more questions are answered in regards to transmission and how 'safe' we could be and whether we'd be ruled out because we could both get cancer and leave the child without parents again. Maybe the Disability Discrimination Act could help, along with some decent MPs. Good lunk to you and anyone who wants to go down this route.

I really feel for you fresh eyes getting this news at this point in your life, I know too many lovely people who've chosen not to have children or to wait because of this illness. I have some time to play with, though I feel for my husband who's broody and has been wonderful in supporting my belated education, my deepest fear is that it's already too late, that our fate was decided when we were pre-teens or even earlier.

It's heartening to read about healthy children born to ME'ers, but the risks seem greater now with these morsels of knowledge. I don't know whether it's worth investigating how people with HIV have children, my husband had heard of sperm washing which removes the sperm from the seminal fluid which carries HIV. Until we know more about where XMRV is and how it's transmitted I don't know if that'll work. The same can't be done to me, I'm probably the biggest genetic risk to an embryo.


I've written this final paragraph four times now, but I'll be honest, I don't know what will happen and although I try to maintain an attitude of cautious optimism this really does make my heart sink. Thank you for sharing such personal information, I hope that the next few months brings some more good news our way, even if the consequences aren't great.

 

[anne]

anne, I've read the basics of your story elsewhere on these boards; thank you for sharing it. Before the XMRV thing, I hadn't really considered the possibility of passing this on to my husband, just because he's stayed well up to now. Your situation has been much on my mind. I'd be interested to know the time frame of your husband's illness (ie how long has he been sick, and how long were you sick before he came down with it).

It's no problem at all, I'm happy to talk about it. It's all so terribly bizarre, and if it hadn't happened to us, I wouldn't have believed it.

I had a gradual onset CFS. I had a two week illness of exhaustion and dizziness in 1991, and then it came back every six months or so. Then I really got sick in 1994 and was sick on and off from 94 to 96. Then I was fine. I met my husband in 97. I had a relapse in 2003 and was sick off and on from 03-05 and was treated successfully by Dr. Peterson (antivirals).

Last April (2008), my husband was diagnosed with mono. He never got better. It took us until the following January to realize it could be CFS--it seemed so impossible that he should get it. But he did.

What's funny is his labs are very similar to the way mine were--the exact same NK cell number, very similar RNAseL numbers. He's being treated with Vistide by Dr. Peterson and is improving right now.

 

[Martlet]

Although whether or not to have children is obviously a personal decision, I think we all come into this world with such a mixed bag of genetics that none of us are guaranteed a healthy life, but I know that I am glad to be here, even with M.E., even with all its limitations and even with the scary bits. Personally, if I was at that stage in life where I wanted a family, I would go ahead, giving another generation its chance at life.

 

[Robin]

Wow, thanks for the topic and all of the ladies here who posted.

This is an emotional topic because I've always wanted to have children very badly. I got CFS at 21 and I'm 35 now. I'm in a severe relapse presently but even when I was more moderately ill decided that I would not have children. I took care of my brother's children when they were small and always had to stop after a few days because their constant needs really exhausted me, and that really showed me that I couldn't do it.

This past year I've become involved with a wonderful (healthy) man, and I'm reconsidering my decision about motherhood, with a great deal of uncertainty and emotion. XMRV infection, fetal transmission, hope for treatment with anti-retrovirals, my relapse, I'm thinking about all of these things every day.

I agree with we have a lot more research to wait for, but if anyone is interested, here's a good site with information about HIV perinatal transmission, breastfeeding transmission, and prevention (scroll down about midway through the page.)

@ fresh-eyes: my sister was in her late 30s when she started her family, she had a baby at 38 and another (oops!) baby at 40. She expressed concerns about her age to her obstetrician, who assured her that it was very common to see pregnant women in their early, mid, even late 40s. It's not without risk, but, not impossible either.

 

[fresh_eyes]

Ah, it's great to talk about this with people who really get it. Thanks, girls.

@ Alice Band, I feel for you - I know that infertility and especially miscarriages can be terribly difficult. I've always felt strongly, intuitively, that I would not be able to carry a baby to term with this condition. It's really unfortunate that adoption isn't much of an option in England. I had no idea. I think in the US it's fairly easy to do private adoption if you have the money; adopting from foster care would likely be subject to all the criteria you talk about (health etc.). Where does England stand on overseas adoption?

@ Katie, it's good that you have time - and your man is a long way off from "old dad" status too in my book, it seems like lots of people are waiting longer. I truly do think treatment for this is in the fairly near future. As far as HIV+ women goes, my understanding is it's not passed on in utero but via blood during birth, and between antiretrovirals & a c-section I've read the chances of transmission can be lowered to around 8%. Also I envy your close extended family and support system - that would make a huge difference.

@ anne, your situation is fascinating, particularly your husband having the same labs as you. Wow. And y'all improved on antivirals...Hmm...I'm glad he's improving and I do hope your child stays well. You know, for me this entire illness falls into the "never would have believed it if it didn't happen to me" category! Sigh.

@ Martelet, thanks for looking at the big picture.

@ Robin, thanks for the encouragement - you're right, I probably do have a few years anyway. I too was feeling pretty settled and OK about being "child-free" until recently - so cliche but I guess it's the old biological clock! I truly understand what you're going through.

Thanks again all, I'm very much appreciating this forum - such a thoughtful, informed, compassionate bunch. Yay!

 

[fresh_eyes]

Levi, thanks for chiming in. Of course all this applies to guys as well! I heard that too about the ferret getting swine flu - had no idea that was possible - and I do understand your concern about your pet. Some of my best friends are animals. Plus there's just so much we don't know about XMRV, leaving lots of room for fears, irrational or otherwise.