Reality - vs - actually having a child when you have CFS/ME???

Discussion in 'Fibromyalgia Main Forum' started by shanwill, Mar 23, 2015.

  1. shanwill

    shanwill Member

    Hi there,
    I've been ill with ME/CFS for 13 yrs and have been waiting to have a child until I got better. Well, this has not happened, and now as I turn 40, my husband and I are realizing we must make this very difficult decision.

    I would like to ask if anyone:
    a. Has gotten pregnant AFTER already having CFS/ME and what their experience was like.
    b. Does anyone know if you can pass on this disease to your child?
    c. Are you a parent now and what raising a child is like with having this illness?
    d. Has anyone ever adopted while they've been ill?
    e. If you had to do it all over again, knowing you would have this illness, would you have a child?

    I have been battling this decision for years and it breaks my heart to think this is yet another thing my illness has taken from me. My biggest fear is that I could pass it on to a child, and my husbands biggest fear is that I would get sicker and relapse. Unfortunately, we also do not have any additional support system for child care. (ie: Local family or paying for a live-in nanny etc).

    There is a big part of me that see's this as very risky. Yet another side of me that wonders 'what if it is ok?' and I could fulfill this one dream. I just don't want to make the wrong decision.

    We would also consider adopting. That solves a couple problems, but it still remains to be seen if I could actually manage to care for and raise a child with the limited energy that this illness allows. My husband needs to work full time, so realistically, that would fall primarily to me. I range between a functioning average of 35-65% depending on my output and catching bugs.

    I would love to hear from the community their experience and knowledge, so I can finally make this decision once and for all.
    Thank you so much in advance, much support to all those who have to deal with this terrible illness...
  2. IanH

    IanH Active Member

    Hi Shanwill,
    It is hard to answer your questions without more knowledge of the history of ME in your family. If you are the first person to get ME then you are probably safer going ahead with a pregnancy. Also if you have has the illness for more than 3-4 years you will be more sure of having no problems. It seems to be in the first few years of the ME that problems will arise. If you have parents or grandparents who possibly had ME or FM and you have had ME less than 3 years then caution will be required. You say you have had ME for 13 years so in that category you may be OK.

    I know one woman who was diagnosed with ME before her pregnancy and two others who clearly had it at the time of pregnancy but were only diagnosed after the birth of their children.

    The first woman mentioned had a child with a mild ADHD, however I don't know of a connection between ME in the mother and ADHD in the child.

    The second woman was actually my daughter whose son was born with ME. (I have ME with FM and my father had FM). It took several years to show up in her son. He is now 11 and at his his worst. He has had a brain scan with no obvious lesions but his pediatrician is testing him for cerebral palsy. I doubt he has CP but these things must be ruled out. He will also be tested for mitochondrial Myopathy.

    The third woman had no problems with her child and she is now 14.

    As you may know, in general if a mother suffers from an inflammatory disease or some infections during her pregnancy she is more likely to have developmental problems in her child, less so if she is replete in Vitamin D. So if you do go ahead with a pregnancy I strongly advise taking 5000IU Vit D3 (not Vit D2) for one month prior to getting pregnant and then 4000IU daily during your pregnancy. It would also be wise to research vitamin D supplementation as it also requires other nutrients to be replete during pregnancy.

    I suggest you contact Prof. Anthony Komaroff at Brigham and Womens Hospital in Boston, Mass. He is the world's expert.
    Last edited: Mar 23, 2015
  3. shanwill

    shanwill Member

    Thank you so much for your reply IanH
    My mother also has FM/CFS so I feel this may be too risky for me to do the more I research now.
    Thank you for sharing your stories, I am sorry to hear about your daughters son, that must be so challenging. This illness can steal so much.