Conference moira::parenting_v3

< Note 514.0 by MVDS01::BELFORTI "Cartoon delinquent from Hell!" >

M-L

You can be a friend, listen to her when she has doubts, hold her
hand when she is down, share her joy when she tells you of all
the little things that you've experienced already. Perhaps, pray
for her when you can.

My sister was high risk (bad back, degenerative discs in her back
42+ when my nephew was born). Josh is 4 and is a healthy boy.

cal

    M-L,
    
    I assume she has spoken with her doctors and knows the risks of the
    pregnancy. If spina bifida is hereditary (I don't know myself) she must
    know the expectancy rate of it being carried on to the baby. If it
    isn't hereditary, then she "only" has to worry about her physical
    ability to carry the baby. I assume it will take alot out of her.
    I know of one person with a physical handicap who had no problem with
    her pregnancy and have an aunt who has a degenerating disk that
    miscarried 3 times in 10 months (I don't know if the disk was the
    direct cause of the miscarriages but she ended up in the hospital
    everytime she got pregnant because of all the pressure and pain in her
    back and then would miscarry).  
    
    Be a good friend and listen and tell her how much you admire her!! I
    would try to be realistic with her, especially if there are risks.
    
    A "touchy" subject you might be able to discuss with her is the AFP
    (alpha feta protein) test that is done around 17weeks to determine
    things like spina bifida. At that point if the results were positive,
    they might have to make a major decision. If they are negative, then
    she knows everything is fine with the baby and can really concentrate
    on taking care of herself.
    
    Best of luck to them!!!
    ANdrea 

    M-L,
    
     My mother has spina bifida and she gave birth to three healthy
    children, and that was almost thirty years ago. If your friend would
    like more information perhaps my mother might know of someone she
    could talk to..Send me a note if she would like me to do that. Both
    my brother and I have children who are very healthy and show no signs
    of having spina bifida. 
    
                          Jill Rousseau
    
     
    

    
    M-L
    
    I had a cousin with spina bifida who died at the age of 14.  Her mom
    didn't have it, but her mother's sister had it.  Since I had a child
    this year, I did some research and undertook amneocentises to find out.
    
    I have been told that s.b. can result from genetics and from accidents
    that happen during the very early weeks of gestation (around weeks
    3-16).  Accidents like very high fevers, serious burns that cause
    high fevers, intense exposure to heat etc.  If your friends s.b. is 
    due to an accident then I would think that her child is at minimal 
    risk but if it is genetic that is a different story.
    
    I assume that she has either spoken to a genetic counselor or has 
    decided to have the child regardless of the risk.  If so, having
    an AFP may only heighten her anxiety.  A high AFP level usually
    means that amneo is done to confirm a suspicion.  A high high AFP
    level is not a conclusive test.  I would suggest she undergo
    AFP, even if she is determined to have the baby.  That way
    the proper medical attention/circumstances can be arranged.  (Woops, 
    I meant I suggest she undergo amneocentesis).
    
    Regarding your support for her.  Encourage her!!!  She seems to have
    done quite well.  Ask her if she needs an extra arm for support, carry
    things for her - but don't make her an invalid, she has probably spent
    a great deal of her life proving to everyone including herself that 
    she isn't.
    
    Good luck to her and  her family!

    Well, Margo and her husband were at the house for Thanksgiving.  I
    asked her if her Dr. has talked to her about what all to expect.  He
    has suggested doing testing, specifically an amnio, but she has opted
    NOT to have it done.  She says she will accept whatever happens... and
    knowing that there is a problem will not change her mind about having
    the baby.  Her Dr. has also pretty much decided that she will deliver
    via C-section, because of all the problems she has had.  He isn't sure
    she could handle the labor, or at least that her back could.

    Her husband was really fun, he said that seeing she already had scars
    all over her back, she might as well have them all over her front too!

    I feel better about this situation, and just hope for the best to
    happen!

    Thanks all for your notes!

    M-L

    M-L, 
    
    One of the main benefits of amneo is to know in advance exactly 
    what to expect.  True, they can take all of the extra precautions
    just in case, but on the other hand - they can also prepare themselves
    mentally for whichever outcome if she has amneo performed.
    
    I guess I am just surprised that she seems to be overlooking an avenue
    that can even better prepare her for her family's own special
    circumstances.
    
    

    I was in shock when she told me she would not have the amnio... I guess
    we'll just have to wait and see.  I'm sure if her Dr. really wanted to
    do it, she would let him... as she has great confidence in him... but
    as of right now, she does not want it done.

    Personally, I would want to know... to prepare, not necessarily to
    abort.... but it is not me, and all I can do is stand by for when she
    needs me!

    Thanks,

    M-L

    Some people want the information so they can prepare.  Others
    don't want to know because all they'll do is worry.  As one of the
    latter, I can well understand why she'd rather not undertake the
    risk of an amnio and the anxiety of waiting for the results and,
    if the results indicate a problem, of wondering how bad it will
    be.  The test won't tell how severe the spinal problem is, only
    that it exists. 
    
    --bonnie

    Obviously, M-L, I am also of the mind that I would want to know.  (And
    underwent the procedure for that reason as SB also is in my family).
    I was much relieved and was able to relax once I knew.
    
    But everyone is different......Good luck to all of you!!!!

Another reason not to do it is the very slight risk of miscarriage 
with amnio.  For me, this coupled with the feeling that I would not 
terminate the pregnancy, and, like Bonnie, would worry myself sick for 
the balance of term, just made it not worth doing.  

Norma

    Final note on this: well, maybe a final note!

    Margo went into labor on July 8, but the contractions would come and
    go, never got into a pattern... she had non-stress tests done, and was
    hooked up to the machine that monitors contractions... she was
    definitely in labor!  

    The Dr. sent her home, telling her to come back when the contractions
    were 5 minutes apart....  on July 17, her due date, she went back,
    because the contractions were finally 5 minutes apart, and steady... 
    again, they sent her home.. she was not dilating, and the non-stress
    test showed the baby was not in distress at all... plus she had the 3rd
    ultra sound in about 2 weeks.... and all seemed fine.... she was just
    contracting, and that was all... she could sleep through it, but
    walking was bad, she did walk *A LOT*... hoping to speed this up!

    On July 22, the contractions stopped.... totally!  She went in for
    another ultra sound, and non-stress test.. everything was fine!

    Nothing until 7:00 Wednesday evening..... she immediately went into
    hard labor.  

    The Dr. finally took the baby, via section, at 5:37 Thursday night (I
    don't know why he waited so long..... either for the section, or to do
    something about hurrying her labor once it was established she was in
    labor on the 8th.... or at least on the 17th)...

    Carlee Jayne was delivered at 5:37PM  July 25, 7 lbs. 9 ozs.

    BUT.... there was a problem!  She has a cleft lip!  Thank goodness it
    doesn't involve the palate.... The split goes up into the nose, but it
    is repairable!  Other than that, she is nice and pink and has LOTS of
    long dark hair....

    I will get to see her tonight!

    I'm glad this is over, as now the worries came come to a rest....
    Hummmmm, or are they just starting???  ;^}  (I have an 18 yr old and a
    15 1/2 Yr old.... believe me, they are just starting)

    BTW... Margo had at least one ultra sound per month, and 1 - 2 every
    week for the final month.... plus, as soon as she went into labor they
    started doing non-stress tests on the baby, about every 2 - 3 days...
    all was very controlled... just very long in coming!

    Thanks all for your input over the months... on and off the net!

    M-L
                              

    I just thought this might interest someone....
    
    Somewhere in here (not under this topic) someone mentioned that
    in the UK it was announced that taking folic acid has reduced the
    chances of spina bifida.  (It was in the past week or 2)
    
    I was reading through some material my doctor gave me and it was
    announced in the New England Journal of medicine in 1989.  However,
    it must be taken during the first 6 weeks of preganancy, when most
    women don't even know they are pregnant.  Another thing they mentioned
    is that you must take 4 grams a day.  That is 4 times the amount in
    most prenatal vitamins (800 mg) and I believe you can only get this by
    prescription.
    
    That's basically all it said....Kristen

    Carlee went in for the first of her surgeries on her mouth yesterday. 
    She was doing real well last night.... fussy, over-stimulated, and
    sooooo tired, too tired to sleep.  But she was fine.  The lip was
    swollen, but it looks good!  Plus, Margo had had a chocolate milkshake
    for lunch, and the chocolate got to the baby... they think!  She was
    buzzing from that, plus taking tylenol with codiene.

    She will go in again at 8 months for more, but it will be mostly
    cosmetic.  Then again at 8 yrs, to graft bone from her hip to her upper
    jaw bone.  There is a small piece missing, and for her permanent teeth
    to come in there has to be bone there.

    It was a riot last night.  I had Margo and Jamie come over for dinner,
    because they had been up since 4am, and I knew they wouldn't feel like
    cooking.  Carlee was really fussy for a while, so my husband stood
    behind Margo and held the dustbuster in the "on" position, until it ran
    down all the way.  It worked, Carlee settle down and started to fall
    asleep.  Then she got fussy again... so we turned on the blender.  She
    conked out, and the blender went off.  It was funny... 4 adults sitting
    in the kitchen talking, one holding a sleeping baby.. as the blender 
    "whirred" away in the background.  One of those thinks you only ever
    see on TV!