Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

[CAcfs]

Thank you so much for all the great, thoughtful replies!

M0joey, I definitely am not assigning a value of 0 to any of the things you mentioned! That is why I am here! If I wasn't concerned about all those things, I would be pregnant right now, because it is what we want. So if not for the worry and concern, I would just do it already!

Also, I'm open to everyone's insight....that is why I asked. I expected to get an array of answers.

With my last pregnancy, I did feel better. Before I even knew I was pregnant, I kept thinking, "I feel great....maybe I am finally on the road to recovery." The "state of pregnancy" lasted quite awhile for me, because I found out the pregnancy was not viable in the 7th week, and was "waiting to miscarry" for quite awhile, until I finally had to have surgery at 12 weeks to remove the "products of conception." My pregnancy hormone remained high for a long time, so that brings more evidence to the whole "chromosomal abnormality" (aka, a fluke) reason.

So though I did have some tiredness during that time (a common first trimester thing) off and on, I also had this amazing sense of well-being and vitality. I'm not saying that means the baby will be safe...just saying I fall under the category of "feeling better during pregnancy."

What is interesting, is even after the surgery, which is when your hormones should start really dropping, I didn't have a big crash. So hopefully that would be good news for me in the future.

I do feel like I could care for a baby. I am only at about 40%, maybe even 50%, but I feel I can do enough with the energy I have. I do have amazing support from my husband. He is one of those high energy people.....that will see what needs to be done, and do it, two times faster than a normal person. If he had a wife with the same energy as him, I think he'd get bored, because I make the messes and he cleans them up.

I am probably "over-sharing," but my intent is to say that I have thought about the logistics of caring for an infant, and it does seem possible. In terms of adoption, I feel it's something you need to be very drawn to (feel it in your heart, not just do it because it sounds good on paper) or you shouldn't do it, and right now, I do not feel it's the right option for me. Though I am thinking sometime in the future I could change my mind. Adopting a newborn infant child seems like such a battle, that I think I would rather consider adopting an older child that was left behind, when we are a little more mature.

I have been taking really good care of myself for quite some time.....avoiding heavy metals in fish, avoiding chemical toxins religiously, in every way I can. Phthalates, styrenes, dioxins, PCB's, BPA...I know and am paranoid of them all.

Anyways, sorry this is so long. Thank you so much for the sites....I am going to check them out.

 

[Snow Leopard]

i'll start with my own personal belief that having a child (whichever way you happen to get it, naturally, ivf, egg donor, adoption, etc) is one of life's greatest joys.

I'm a youngest child, so I never really understood until seeing my niece & nephew.
I have some functioning, but I find it very difficult to look after a young child, certainly not enough energy to be a house-husband like my brother in law. I think it is not a wise choice unless you have a support system in place.

I'm not so sure about the viral risk to children, I think it depends on the person in question whether you have chronically re-activated viruses and we still don't know much about XMRV transmission.

The problem for women is you can't necessarily wait forever, at least if you want to have your own children (I personally don't see the big deal in adopting, but not everyone feels that way). It would be nice to think we could take ARVs and be functionally cured in a year or two, but reality might not bare out that way.
I think if you are in your mid 30s and have a suitable support system, then the choice may be more slated towards having a child in the near future.

 

[Wayne]

So the embryo/pre-embryo died before it was even visible on ultrasound...

Hi CAcfs,

Welcome to the forum. I empathize with your dilemma. As others have said, there are no easy answers, and no right or wrong answers. I'll just mention that CFS hit hard for me in my early 30's, and it didn't take long for me to realize it was unlikely I would ever be able to financially support a family (I'm on disability and couldn't even support myself even if I absolutely had to).

Regarding your situation, I would probably recommend patience at this time. I believe it's possible a large amount of information will become available to all of us in the next couple years or so, much of it being relevant to your questions regarding pregnancy. Also, I would highly recommend against getting any kind of ultrasound if you were to become pregnant. Becoming pregnant while having CFS would present many challenges; no need to add to this by introducing unnecessary stressors with the potential to complicate things further. Many mothers without CFS have been very regretful of getting ultrasounds; you may want to do some research on this.

Best to you, whatever you decide for yourself.

Wayne

 

[helsbells]

I never had any because besides being too sick to care for a child i was always really worried I would pass it on - It does make me sad though.

 

[Jenny]

Hi CA

This is a very hard decision for you. Just to add my experience - I came down with ME 28 years ago while pregnant with my second child. I was in mostly in bed for 3 years and my husband left, but I just about managed to cope with two toddlers. Since then I've had relapses and remissions, but I managed as a single parent and also eventually went back to full-time work as well. Both children - now 30 and 28 have always been very healthy.

As someone else said - what will happen is so unpredictable. After 3 years of illness I was told I would never recover and never be able to work again. But things worked out for me - eventually we had a normal family life for 20 years - (though I am now very ill), and I know quite a few people who are either completely or 90% recovered, without any treatment.


Jenny

 

[JAXintheCity]

First of all, CAcfs, welcome to PR. Glad you made it here.

There isn't going to be an easy answer to your question. Even when it comes to well-understood genetic illnesses, the question of whether or not it's ethical to have children with the risk of passing it on is answered by individualized genetic counseling from a professional highly trained in the area. Now throw in the little understood complexity of CFS and the XMRV breakthrough that's only in its very preliminary stages of being discovered and you've got a mind-boggling issue to contend with. Add to it the question of off-label use of ARVs and it's no wonder the responses are going to be all over the map. Don't be discouraged. Do try to be objective. And take what we say with a few tablets of salt.

A while back I researched CFS and pregnancy, and from what I recall it seemed that many women actually experience improvement during pregnancy, even complete remission, only to relapse back soon after the pregnancy. That isn't to say it'll happen with you, but it appears the odds may be in favor of it, and that fact is one I keep carefully stored away in my mind, as one who also yearns to have children.

I strongly vote to skip the ARVs, for many reasons. One, we don't know if they actually work. XMRV is not the same as HIV, in fact last I heard they were saying it's possible XMRV isn't treatable at all, because it does not replicate as quickly as HIV. The third known human retrovirus, HTLV, is not treatable, so just because it's a retrovirus doesn't mean HIV meds will have any effect on it.

Second, the drugs are toxic, with side effects. Now if you're absolutely sure they're necessary, then that downside is mitigated, but when we don't even know if those particular drugs are effective against XMRV, or that XMRV is treatable at all, or that XRMV causes CFS, then now you're risking yourself and your baby who may end up with CFS anyway. I understand those currently experimenting with ARVs as treatment, but realize that it's jsut that - experimenting. You don't want to experiment on your unborn child.

Another reason is that if these drugs are in fact effective against XMRV and XRMV causes CFS, a lesser dose or combination could make the XMRV resistant to the drug, makeing it at best harder to treat, and at worse untreatable. When HIV drugs were being figured out that happened to some people, and they died because of it. I'm not scientist or medical professional so I don't know how probable the risk of that is, but knowing hte risk is there should factor into your decision. My opinion is to strongly urge no ARVs for you during pregnancy.

Waiting a few years until we know more? You could, but I wouldn't. Two reasons: First, I figure best case scenario as far as figuring this whole thing out, 3 - 4 years from now XMRV will be well-known and lets say causation has been tenatively established. Realize that according to the two positive studies with their healthy controls, we can reasonably guess that the majority of people who are XMRV+ do not have CFS. So a few years from now if everything progresses the way we think it might then basically the best you can hope for is that a whole bunch of healthy people will be in the same boat as you regarding XMRV and having a baby and ARVs, the only difference is they won't have CFS, and there might be the option to participate in studies on it. But that's it. We might know a little more, the general public might be better informed and the scientists may be more accepting, but things won't be figured out by then.

My second reason is this: you don't know what the future holds. Don't put off the most important things in life hoping there'll be a better time for it. Don't allow the perfect to be the enemy of the good. For all you know, a year or two from now you could be injured in a car accident in such a way that you are unable to have children, wouldn't you wish that you had become pregnant while you could? For all you know your health may decline from here on out, wouldn't you wish you had become pregnant while you were at a good spot? If you and your husband are together on this, you both desire a baby, you would both love him/her very much and are collectively capable of taking care of him/her, and after reading these replies you are not dissuaded, then don't wait! Life is short, and tomorrows aren't guaranteed.

Now yes, it is not an easy issue. If worst case scenario happens, that XMRV does cause CFS, that your child is born with XMRV and develops CFS, then you will wrestle with your decision and your child will wrestle with your decision as well. In the darkest moments your child might ask you why you brought him/her into the world knowing s/he might suffer like this, and you might find the agony of watching him/her suffer nearly eats you up with guilt. That stuff would be terribly hard to deal with, and if you go through with this, that would be absoute worst case scenario.

But here's the way I see it: worst case scenario there's still a new person in this world who would know they're loved and cared for and cherished. And though times could get really rough, a loving family will grow together and heal together and share each other's burdens to make the load collectively a little lighter. Would it be easy? No. But since when is family dynamics easy? Yes, we have a different dimmension added that healthy people generally don't have to deal with. But you could say the same for those living in poverty, or those who are famous, or those who are carriers of genetic diseases, or military families, or a host of other unique situations. The point is, while each individual situation is unique, the dilemma of bringing a person into a world that may not be postage stamp perfect is par for the course. Difficulty is hard on kids, but at the risk of sounding callused, that's life. Welcome to planet Earth.

Let me give an example. My little sister, whom I love dearly, has been growing up with an absentee big sister, and because of my condition she's had to grow up fast. Too fast. It both breaks my heart and fills me with pride to see her respond to situations with a maturity beyond her years. We're close, even though we aren't able to connect very often. She understands how much I love her and that I would do more with her if I could. It hurts her to see me in pain and to hear that I'm having a rough time of something. I dearly wish that I could throw off this disease if only for her own sake, so that I could be more like the kind of big sister I want to be and make life less painful for her. But you know what? As a family, we're okay, and as a person, my little sister is okay. She is growing up marked with a unique perspective on suffering, but she's active and enjoying life and blossoming into a beautiful young woman inside and out. My inadequacy has thankfully not held her back as I feared it would, and it's such a lovely thing to witness her life unfolding. Despite hardship that I wish I could have protected her from, she's alright, and I'm alright, and our parents are alright. As a family, we're making it. Life is rough, but you stick together, love each other, get the support that you need, and despite the hardship there will be a precious aspect of it that cannot be obtained otherwise, and that will be a blessing.

If you decide to have a baby, know that your CFS does not in any way make you inadequate as a parent. No matter how ill you become, if you are capable of loving your child, showing them that and your child is physically provided for, then that's enough. You might not be able to go to every game of theirs, but you will be able to ask them how it went when they get home and encourage them to telll you all aobut it. You may not be able to make them cookies, but you might be able to direct them from the couch on how to do it while you all laugh together at their errors. You might not be able to clean up after them...that just means at a young age there'll be no option but to learn that the must clean up after themselves. Do you see what I'm saying? Every parent worries about whether or not they're capable of raising a child right, and those with a disability have an added dimension to it. I'm telling you, your kid(s) will be okay.

Your child may develop CFS, and if so you'll be there to support him/her, to validate their symptoms, to be their staunch advocate and guide him/her though the painful ins an douts of this illness. Who better equipped than yourself? Your child may be perfectly healthy, and if so you'll be his/her greatest cheerleader, urging him/her to grasp life to the fullest, because you never know hwen it might be snatched away. Your child might be born with a completely unexpected rare genetic disease that no one could have seen coming, and you'd have a bunch of unexpected hurdles to cross. Well by now you're probably pretty good at handling doctors and doing medical research, you'd put that to good use right quick to make sure s/he gets the best medical treatment possible.

Again, my point is, no matter the outcome, it'll be okay. At least, that's my personal perspective on things.

This is really a stunningly beautiful and well-written response. I run a group for families of CFS patients online and would like to share it with them with your permission.

This makes me feel so much more clear about my own decision to have children, too.

Thank you!!!

 

[Chrissie]

Hi,

I havent had a chance to read all the way through this thread but I didn't know if I could maybe offer some advice. I'm XMRV positive and recently found out the I am pregnant, Judy M kindly emailed me with her advice and in my case as I am positive via culture only she said that it is impossible for the virus to pass to the placenta.

I don't know if you are XMRV positive but if you would like me to forward the email on to you I would be more than happy to.

Best of luck! Chrissie

 

[Navid]

Hi,

I'm XMRV positive and recently found out the I am pregnant, Judy M kindly emailed me with her advice and in my case as I am positive via culture only she said that it is impossible for the virus to pass to the placenta.

I don't know if you are XMRV positive but if you would like me to forward the email on to you I would be more than happy to.

Best of luck! Chrissie

this is very important information for those of us who do have children and worrry that we may have passed the retro-virus to them in vitro. even though my son is quite healthy. i do worry. if there is evidence that this virus cannot pass thru the placenta does that mean it could have been passed during actual delivery.

can you ask dr. judy if you can share this info with all the worried parents on this board.....rather than us all bombarding her with questions.

if she is amenable can you start a new thread with the info.

thanks

 

[Dainty]

This is really a stunningly beautiful and well-written response. I run a group for families of CFS patients online and would like to share it with them with your permission.

This makes me feel so much more clear about my own decision to have children, too.

Thank you!!!

Thank you for your kind words. You have my permission, I hope they find it helpful!

 

[Daffodil]

how can it be impossible for it to pass on to the baby?? i dont understand

 

[sidonie]

What about men who are XMRV +ve and want to have chilkdren?

 

[Hope123]

this is very important information for those of us who do have children and worrry that we may have passed the retro-virus to them in vitro. even though my son is quite healthy. i do worry. if there is evidence that this virus cannot pass thru the placenta does that mean it could have been passed during actual delivery.

can you ask dr. judy if you can share this info with all the worried parents on this board.....rather than us all bombarding her with questions.

if she is amenable can you start a new thread with the info.

thanks

Good question and I hope Judy M has someone post out info. There are certainly some infections where the baby isn't infected via the placenta but during delivery. In some of those case, a Cesarean will be done to avoid infection of the child if antibiotics are not effective, mom can't take, etc.

For men who are XMRV+, putting aside the personal question of how important passing on your exact set of genes is, I would guess using a sperm bank or sperm from a male relative/ friend would be one option. I believe this is much less expensive and onerous than what women have to go through for IVF but someone correct me if I'm wrong. For HIV, I know researchers have looked at sperm washing:

http://aids.about.com/cs/womensresources/a/washing.htm

Here's a 2007 article about HIV and pregnancy in women. Some stuff might have changed in the last 3 years so take with grain of salt.

http://aids.about.com/cs/womensresources/a/pregnancy.htm

 

[ukxmrv]

I'm going to be interested to hear if XMRV is the reason for my own series of miscarriages and IVF failures.

XMRV+

 

[justy]

i have been ill or years, but only diagnosed with M.E this year. I have 4 children. 1 was diagnosed at 14 with dyspraxia and dyslexia. He also has lots of problems with his health, but was fine as a child. My daughter became ill at 15 with an undiagnosed chronic illness, which is making her life exremely difficult. my husband, who was always very healthy is beginnign to show worrying signs of ill health as well.
My other 2 younger children are fine - so far- but i worry constantly that they are ll ill because of me. I am so scared tha my other children will get ill. I have also had to care for my eldest child when i have been too ill to care for myself properly.
If i had known this would happen -i would give anything to make it not have happened.
Yes i love my children, they are the light in my life, my reason to be.
do not underestimate how hard it is to lok after a baby. Sleepless nights right now would probably finnish me off!
Good luck x

 

[ukxmrv]

Sidonie,

We need to know what XMRV is doing to the hormonal status of men and genitals. My husband developed cancer after we met and is now infertile. We need biopsies studied from men with XMRV to see where the virus is. He's not been tested for XMRV yet. I'm positive.

We also need to find out if XMRV goes into the germ line and how it is transmitted to children.

One of the many areas that has been neglected for people with ME is fertility. No one has been researching it. People with ME have not been given the chance to bank sperm and eggs. We don't know as yet how the virus is passed on.

 

[eric_s]

I'm really shocked to read about all those stories, where people's children or partners or spouses get health problems or CFS.
All the time, i could read and was told that CFS is not infectious. The Swiss CFS organization put this in their flyer. And before, i've never heard of such cases, but i didn't know a lot of PWCs before i came to this forum.
I myself don't have any such experience, my mother has some sort of muscle pains, but that does not have to be linked to XMRV. I don't know my XMRV status, neither does anyone in my family. But i stick to everything someone with HIV should, to be sure.

 

[ukxmrv]

Eric and all,

I've not said that before as it has been too painful for me.

A couple of people reacted in a particularly hurtful way when I told them I was XMRV+.

It was a "aren't you glad that you didn't have children" and a "it's just as well you don't have kids".

As if knowing that I couldn't pass this virus on to young ones would somehow make me feel much better.

There was no acknowledgment over the cancer, miscarriages (i.e. our dead children) and infertility. Let alone the horrible effect on the health of myself and possibly my husband.

 

[Jemal]

November last year we decided to try and get pregnant... and by the end of november I had full CFS symptoms (I had other symptoms for years, just not the fatigue). I didn't really know about CFS back then and I thought the fatigue would go away in maybe a few weeks. So we decided to go ahead... my wife is now 8 months pregnant with twins. I hope I have the energy to tend for these children. My wife is healthy fortunately and at the moment I feel better because of some things I am trying. I am definitely not my old self, however. I also worry about XMRV. If I have it, my wife might also have it. And it could be that XMRV is transmitted by saliva...

We'll see how it goes I guess. If it's a virus we have, we have already been transmitting it to other people, especially if it can be spread by saliva.

 

[eric_s]

Yes, some people have an irritating way (to put it very mildly) of reacting to you, if your health is not ok. It happens to me too.
If they really know what you have and you have explained it to them in a good way, most people are even very nice and helpful, in my experience, but as long as they don't really know what you have it's often not a pleasant experience.
I usually don't like to tell people, now, since there is XMRV i mind less, because at least i can say something that makes sense, so i think they might think some bad things about me at times. But sometimes, i even prefer that, i don't like to be seen as sick (depends on the people though).
Once a girl asked me, if i have cancer Or now, that i'm in Spain, the lady at the residence where i was staying, thought i don't eat enough. Because i'm quite tall and have not been doing sports for years, obviously, and my body has adapted to that way of life, i weigh 15 kilos less than before CFS. I was always like that, never fat, everyone in my family is like this, but i used to have more muscles. So when i came home after driving around for 2 hours or so and all i want and need is to rest, she invites me to have dinner with all the other people there, which is very nice by her but is wearing me down and not very comfortable if you're not feeling well, are pale and have to sit and talk with everyone.
Or another girl i met some days ago, at this residence, we talked a lot and had fun and then she and her friends went out and she asked me if i'd like to come with them. I said i'd like to, but i have some health issue and should better go to sleep but we could go to a bar or something another night. When i asked her again the other day she was pretty evasive... why could this be?
But nevermind, if XMRV is it, and i'm still rather hopeful, our days will come.

 

[eric_s]

Good luck, Jemal!!