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

[Mya Symons]

If you have access to antiretrovirals and your husband is healthy then I say go for it. There is no reason why you should have to miss out on any more of life, including having a baby. Further, just because you are sick, does not mean your child will necessarily be sick. While I do have a son that has had symptoms, I have a 20 year old daughter who so far is perfectly healthy. Perhaps your child will inherit the right genes, your husbands.

 

[insearchof]

Hi CAcfs

I think your doing a wonderful job of throughly investigating and considering this very important life choice, from all angles.

I agree with Tulip that ME is a life long illness, but there is also a spectrum of severity, with acknowledged periods of remission and relapse. For many who have had prolonged severe ME and do not have family or other support and are married or in a commited relationship the question of children can be moot and the decision making process quite clear cut. For those who have a little more functionality and can see that a family can be managed because they are fortunate enough to have the resources/help/and improving health - it is not clear cut - as this thread shows.

My thoughts are:

1. we dont have all the answers be it to XMRV, or any other cause of our illness and we dont know when or if they will arrive. So work with what we know now and act on that. Seek out experts to answer any questions you need the answers to and make your decisions based on that.


2. we dont know what tomorrow will bring, so work with what today gives you.


3. we have no way of knowing how robust our childrens immune systems will be, and fundamentally I believe with this illness and all others - health relies on a robust immune system. As you cannot control this, like so many other facets of what a child is born with, you can only do what other expectant parents do - do all you can to boost your own health care prior to pregnancy and hope and pray that your child will be born healthy.


4.There are no perfect parents or perfect people. We are all flawed and not only in obvious ways (such as physically). However, I believe that for every short coming, there is often a larger compensatory factor or gift that is usually present, but overlooked.


5. The best we can provide a child with - is a stable home life (be it one or two parents)
and the best of ourselves we have to offer, however limited that is. A child who was very much wanted, cared for and loved, will do just fine. Your child is sure to feel all those things even if he or she never learns about your soul searching here, I am sure.


Based on the experiences of others in this thread and my own knowledge of those who are XMRV+ (or not) and general infectivity to third parties, I believe health is determined on the basis of the functionality of the immune system. And as your pointed out previously, a child does not automatically inherit the immune system of its mother.

So here is what I would do:

1. Get some tests done on the status of your present immune functionality, gut flora, gut and general bugs, nutritional status as well as any others recommended for mothers preparing for pregnancy

2. If you can afford it, try and get into see some one like Nancy Klimas who has probably assisted pregnant women in the past and who can give you further information on measures you can take to shore up your health and the health of your child. Someone like Nancy would also be knowledgable on XMRV and anything you need to address there.

3. Devise the best treatment plan you can to address any problems found in the test results and or generally to build immune health for a period prior to attempting conception

4. Start to think about and plan what you will need in terms of modifications to your lives, what additional resources and help you might need, when the child arrives and work towards those ends. Ask yourself, what would happen (heaven forbid) if you lost your husband for any reason or he was unable to work and or care for your family. Do you have disability insurance? Life Insurance etc? Can you afford to put some savings away to cover such possible needs? These things could lighten the financial burden and or assist in hiring help if you need it in the future. The forum Tulip mentioned might be useful there for other tips. You might also want to take care of a child for a few weekends (ie: relative or baby sit for friends) to allow the reality of how taxing physically this will be. It can be a great insight/dry run and provide greater clarity on the extent of support you might need.

5. Be militant daily, in your current health care - adequate sleep, rest, etc.

6. Oversea and do all you can to police and assist in maintaining the immune health of your hubsand and children

At the end of the day, we can only work with what we know now, what we have and do our very best to minimise risk and encourage the best possible outcome, for ourselves and those we love and who share our lives.

We cannot and should not, put our lives on hold indefinitely. Nor should we be so willing to give up on what matters most to us in this life, be it a family or anything else that may be within our reach.

All we can do, and all life really asks of us, I am sure, is that we do the best we can in all the circumstances.

From the careful thought, inquiry and consideration you putting into this excersie - I would say you are and will continue to give this your very best. I dont see how you can do any more than this.

All the best.

 

[fla]

My wife and I stopped trying to have a baby when I was diagnosed with ME/CFS. Feeling the way all my symptoms make me feel, I would tell my parents to adopt if they knew I ran the risk of being born with this.

 

[Jemal]

My wife was pregnant by the time I realised I had ME/CFS
Anyway, our twins are now 5 months old and they are developing normally so far. Some days I am struggling a bit to take care of them (especially fridays, when I stay at home with them and my wife is working), as they demand a lot of attention and energy, but for now we are coping.

 

[Doogle]

FYI, Valcyte can be extreamly harmful to a fetus. I don't know about the other acyclovir drugs.

 

[thegirlwiththedog]

I haven't read through this thread yet, but here's what Klimas has to say on the subject. She says that women with ME/CFS typically feel much better while pregnant, because their blood volume and cortisol levels go up during pregnancy. They also tend to do OK during childbirth. Three months later, blood volume drops again, and that causes the typical crash -- but, she says, if you watch for it carefully, you can treat it. She recommends not breastfeeding, because it's tiring and because there's some possibility of transmission of a retrovirus. She also said that it's very important to have a supportive partner, because folks with ME/CFS simply HAVE to get their sleep. Finally, she said that women with ME/CFS tend to go through menopause early, so you shouldn't wait too long. Overall, she was remarkably positive about it.

 

[thegirlwiththedog]

Oh, and she said that the kids tend to be fine. She also said that she's confident that there will be better treatments by the time it's likely to be relevant for a child.

I must say that I was a little bit skeptical of her degree of positivity overall, though it was also what I wanted to hear.

 

[justy]

I really agree with all the positive statements above, although i take issue with the not breatfeeding advice. Breastfeeding is the best way to ensure good health for your child for the rest of their lives, it is especially important for the development of the immune system. Many woman also find that their M.E symptoms dont worsen again until they stop breatsfeeding - this must be a protective hormonal benefit. Plus breatfeeding protects the mother from some female cancers and there may be a higher risk of cancer in women with M.E. Breastfeeding is not any more tiring than the exhaustion that accompanies being a new mum or dad. Breastfeeding is often easier as you do not have to get out of bed to warm bottles etc you can lay down and nap and feed. I knwo i am biased as in another life i am a breastfeeding specialist and Doula.

I cant see that taking antivirals or antiretrovirals would be a t all a good idea in pregnancy

 

[Tulip]

I haven't read through this thread yet, but here's what Klimas has to say on the subject. She says that women with ME/CFS typically feel much better while pregnant, because their blood volume and cortisol levels go up during pregnancy. They also tend to do OK during childbirth. Three months later, blood volume drops again, and that causes the typical crash -- but, she says, if you watch for it carefully, you can treat it. She recommends not breastfeeding, because it's tiring and because there's some possibility of transmission of a retrovirus. She also said that it's very important to have a supportive partner, because folks with ME/CFS simply HAVE to get their sleep. Finally, she said that women with ME/CFS tend to go through menopause early, so you shouldn't wait too long. Overall, she was remarkably positive about it.

Not quite true, only one third of women with ME/CFS feel better in pregnancy. Pregnancy made me much much worse, so did child birth and all the drugs I was given for pain relief. So women with ME/CFS need to go into pregnancy knowing it could go either way for them. I breast fed for 3 months and also used formula, for me it was not a good idea. But once again it depends how pregnancy effects you. Also you can't treat a relapse unless you are extremely lucky to live near an ME/CFS doctor, which for most of us just isn't the case. ME/CFS is a highly specialised area, with very few specialists. I would not use anti virals during pregnancy either, you could end up with a deformed baby. Women need to be aware of these things. This isn't being negative it is just providing a true picture of things. If women know all these things, they will go in armed with everything they need and they will be fine. Knowledge is power!.

http://www.njcfsa.org/FACTPREG.html

Men with ME/CFS do not need to worry about having sick children if they aren't positive for XMRV. I don't get why they would be worried, you aren't giving birth to the child

 

[Fejal]

Not just xmrv, that's probably just a trigger for latent bacterial infections that are blood borne. Bad idea to have kids until cured. Accept it and spare your babies the suffering and maladjustment from the inability to parent them.

 

[leaves]

Please spare us the self-righteousness

 

[Fejal]

It's just tiresome seeing people self justify their desires with flimsy arguments.

 

[Tulip]

I think it's time you left the building, Fejal. Before you are evicted from it. This is meant to be a place of support, not ridicule...

 

[urbantravels]

Fejal, you are being rude, condescending and inappropriate. You can state your opinion and what you would do if it were you making the decision, but to tell people who make different decisions that they are "unfit to be parents" and are making "flimsy arguments" to justify themselves, and that you have the definitive answer on what everyone should do (when the absolute top experts in the world on ME/CFS don't have definitive answers; anyone who says they do at this point is selling a bill of goods) is just an attempt to dominate, not engage in a discussion.

You do not have the right to assert that others on this board - who are struggling with one of the most profound, deeply felt questions of their lives - are just self-deluded people who don't see the question as realistically as you do.

 

[Fejal]

Well i don't agree. Parents need energy and cfs patients don't have it. Moreover it is cruel to risk a child's health with an infection. Just because you don't agree doesn't give you the right to bully me about it. I've already said this no reason to repeat.

Also, the global warming projections are that in 100 years most of the earth won't be inhabitable due to excessive temperature and it's already overpopulated as it it is. So people shouldn't feel bad about not having the chance to have offspring.

 

[markmc20001]

All I can say is life is full of uncertainties. XMRV still has uncertainties around it.

Only you knows your level of illness and your situation.

 

[leaves]

Children need perfect health, perfect parents, world peace, unlimited funds and attention, healthy air, an in tact ozon layer and friendly neighbors.
That's not what they get. Life is inherently risky and imperfect. We can try to do our best, but well never have complete control. Things will go wrong. Name me one perfect family, it doesn't exist. Moreover kids get strong from overcoming difficulties, it prepares for .. Life
Cfs is yet another source of risk but not more than that.
You are not bullied. Nobody is criticizing your decision not to get children. You are criticizing and ridiculing others and implying that they make a wrong decision if it isn't identical as yours. That's a very unpleasant attitude. Use this feedback as you wish. I don't care. Good night.

 

[Tulip]

Fejal, no one is bullying you. This is a place of support and acceptance, you are not being either. What you have said to people in this thread is akin to saying parents shouldn't have kids if they are:

A) ugly
B) fat
C) stupid
D) deaf
E) missing a limb
F) have ANY type of disease, skin condition, allergy etc etc etc in their family history dating back to christs birth, that *may* be inherited.

We don't live in a perfect world as leaves said and it's not up to people like you to preach to others, especially others that are clearly caring people.

 

[Mark]

It's just tiresome seeing people self justify their desires with flimsy arguments.

Then when you find what people are writing to be tiresome to you, ask yourself whether this thread is actually about you or for you, spare yourself the grief, and wander over to another thread rather than weighing in with your views on whether other people should have babies. This is a thread asking whether a CFS female should have a baby, which would seem to me to be a decision for the female and her partner, and them alone. Likely the females want to discuss ths question on this thread with other females who are facing the same question, or those who have relevant personal experiences to share to help them make their decision - you're not bringing any new information here.

Tulip has said it well, your argument applies to anybody with any illness that may he heritable. You've also pointed out that the planet is going to be in such a hopeless state in the years to come that...what...nobody should have babies at all? It's a pretty pessimistic view of the future and it's not a good idea to express it to a group of women who are wrestling with a horrible personal dilemma and looking for advice and support with their decisions.

I'm very sorry you feel so negatively about the prospects for the future but I take a more optimistic view. I think that science and society is going through such a rapidly accelerating period of change that nobody can actually predict what the future may bring. Equally likely as the apocalyptic forecasts based on projections from the past, is that a series of transformations and scientific breakthroughs will completely remake the world as we know it. There are many grounds for optimism that science will deliver great leaps forward just as it has done in the past.

For a more upbeat perspective, I suggest you read up on The Singularity if you haven't already - that's a serious suggestion to try to get a more uplifting vision of the future - because true or not, I find hopeful visions like that helpful to contemplate and get a balanced perspective on the unknown future, and it's certainly a better idea than taking things out on the posters on this thread. They won't not have babies just because you don't think they should, they will weigh their decisions as those who have the responsibility for the consequences always have - so there's no point telling them they shouldn't.

However, though it's perhaps none of my business, I do have a personal experience to share, which is that I am personally lucky to know 3 children of people with severe IBS and ME, and even though sadly all 3 of them have the kind of illnesses that are thought to afflict children of some of those with ME (autism, diabetes and immune weakness), and their parents are of course challenged in their parenting, those children are all rather wonderful, well-adjusted, well-cared-for, and above all, happy. In fact one of them is very happy and energetic and a joy to be around. One thing I've noticed is that their growing awareness of their parents' challenges makes them less demanding and thus less 'spoilt', more independent, than many children, and I speculate that might mean they will grow up to be more caring and nicer people than the norm. But who knows?

So it is a very tough decision, to be thought about very seriously, but I would have to say I have never looked at any of these children, in practice, and even begun to think that it might be better if they hadn't been born - quite the reverse - and I doubt that very many people ever feel that way in practice.

 

[insearchof]

Not just xmrv, that's probably just a trigger for latent bacterial infections that are blood borne. Bad idea to have kids until cured. Accept it and spare your babies the suffering and maladjustment from the inability to parent them.

This is based on the following unsuppportable assumptions:

1. that CAcfs has bacterial infections
2. such bacterial infections could be of a kind that could harm the unborn child
3. having ME and XMRV will result in an ill child and or ill parent unable to care for that child.

From what I read:

1. CAcfs has not had any bacterial tests performed
2. There is no data to support the notion that ME or XMRV, will automatically result in a less healthy child
3. CAcfs is feeling confident with her improving health to the degree that she believes she can have a family and make a contribution to it
4. Proper planning and a supportive network of family and friends will enable any disabled parent (whether they have ME or some other illness) to care for a child.