Conference moira::parenting

Wendy-

I would seek out support from any and all resources in making this
decision.  (I realize you're doing that, in part, by writing here.)

More specifically:

When Barry and I were debating having an amnio, we happened to speak
with a pastor who we know.  He didn't try to sway us either way, but was
emphatic that if the results were "not good", he'd be there to help
us and support us through our decision-making process.  (He made it
clear that he'd also support us if we terminated a pregnancy.)  Just his
offering was enough to convince us to have the test done; we knew there'd be
support available. (If you'd like his name, please contact me off-line.
He's in Nashua, and is one of the most wonderful counsellors I've met.)

I realize you're in a terrible situation.  You're making decisions
based on an unknown outcome.  Can the doctors tell you how broad
a spectrum the outcome might be?  For example, can they say "if
the child has been affected, he or she will have a lifespan of
no more than one year?"  Or are you facing a lifetime of supporting
a child who will need total care?  What might the child's quality of
life be?

Can the doctors refer you to support groups of people who either have
been there or who are raising children with special needs?  This might
help you identify just what you might have to deal with and identify
your ability to cope.

Finally, I would avoid discussing this with family members who might not be
supportive of your choice (whatever it might be).  I say this because
I know my mother-in-law would go ballistic if I ever terminated a pregnancy.
My husband and I agreed, prior to the amnio, that there are some decisions 
that are PRIVATE. (If we decided to terminate, we'd present it as a
miscarriage.) Not everyone need know everything, especially if you, as
the parent, don't welcome their unwanted advice or criticism.

Wendy, my heart goes out to you.  I've been thinking of you each day, even
though we've never met.  I pray for a good outcome.

--Jennifer

    
       Wendy, I'm so sorry to hear about this. This is a really tough
    decision. I really don't know what to say. Just good luck and hope
    that which ever decision you make it's right for your family.
    
       I was once faced (18 years ago) with a pregnancy that wasn't
    stopped by the IUD. Of course this isn't as major as yours. I had
    people try to encourage me to get an abortion. I didn't have a 
    bunch of tests, just told that the possibility of birth defects were
    there. The only birth defect was his baby teeth didn't bud and there
    was no enamel on them. The main reason I didn't get an abortion
    is because I knew in my heart I would have a hard time living with
    myself. Mainly that was because I knew that the baby might be perfectly
    normal and healthy. 
    
        But, to have to face all the deformities that's a different story.
    I think that talking with your husband and doctor and people that
    you feel comfortable with is very important for you before you make
    that decision. Lay out all the options of the childs care if you
    do keep he/she. How will it effect your family as a whole? Will
    you still be able to nurture and care for the two older ones? How
    many ways will it effect them? Financial possibilities. Is it possible
    that the baby will die soon after birth? 
    
        I remember a friends sister. She had a baby with no skull. The
    baby was carried full term. She delivered it normally. The baby
    only lived 6 hours. 
    
       I think this is a big decision to make , and even though the final
    decision is yours, talking is major step in making the decision. 
    
        Take care and good luck,
    
        Rose Marchand 

	What an awful decision to have to make!  I wish you
	the best.

	I thought about this when I was pregnant and here is 
	one decision I did make...

	If the child DEFINATELY has a fatal deformity and would 
	die almost immediately after birth, I would choose to terminate
	the pregnancy rather than carry to term.  If I carried to
	term, I would spend 3-4 months with that child in me grieving
	and basically an emotional basketcase.  Then the child would
	be born (and labor would be miserable because there would be
	no happy ending) and die and then the grieving process would
	continue.  Thus, I would terminate the pregnancy and begin
	the process of grieving and healing immediately.  There would
	be no healing, just grieving, if you carried a child to term
	that you knew was going to die.

	The other less extreme birth defects are a highly personal
	decision as far as carrying to term (and also keeping the
	baby after birth).  I have my own opinions on that was well 
	but prefer not to discuss them here.... not in the mood to 
	be attacked!

	FWIW, I know of a couple who had a Downs baby.  She was a
	surprise (didn't know before birth).  They never took that
	baby home from the hospital.  She was adopted and living
	very happily with her new family and several other downs
	children.  I could never give my child up for adoption
	however sick he/she was but there is that option.  You don't
	seem like the kind of person who would either but I just
	thought I'd point that out.

	Karen

>    . . . The kind of abnormalities that they are looking for are
>    incompatible with life outside of the womb. 

>        In the next 6 weeks I will be going through just about every test
>    that they have available for diagnosing intra-uterine problems, regular
>    ultrasound, amnio, bloodwork (tons), AFP from the amnio fluid, high
>    resolution ultrasound. 

>        The problem with these tests is that they would not tell us if
>    there is any retardation or if there is an electrical/nerve problem
>    with the heart. We would only know that after the baby was born.

Sorry Wendy, but I don't understand.  I believe that some of the tests you 
mention in your second paragraph do indicate certain conditions (such as 
Down's syndrome) that are often accompanied by some degree of retardation 
and/or heart abnormalities.  Is that incorrect?   Your third paragraph seems 
to indicate that you will only know whether or not a fatal abnormality 
exists, but not whether or not retardation or heart abnormality exists.  Is 
that correct?

Clay

    
        The tests that we are scheduled for will tell us if there is a
    major physical deformity. Other than Downs which is detected by looking
    at the chromosomes, the tests would not be able to tell us if there is
    retardation to a fully formed brain or if there is nerve/electrical
    damage to a fully formed heart (that beats ok with assistance but may
    not beat well on it's own). Apparently the biggest threats are to the
    brain and heart during the first trimester.
    
    				Wendy                         
	

    Wendy,
    
    So sorry that you and Marc even have to think about this terrible
    situation.
    
    My best friend went through a similar situation, she was exposed to
    radiation during some Lower GI tests when she was only a few weeks
    pregnant (she didn't know) and went through a harrowing period during 
    which they waited to find out the amount of radiation she was exposed to 
    and if it was in the "acceptable" range.  I entered a note about this
    is the last version of parenting.
    
    One of the things she did is to take all the information she had, from
    the numerous tests she had done, to a geneticist.  This doctor was able
    to look at the results and then through some procedure help determine
    what chance there was that she would have a child with problems or a
    perfectly healthy child.  There was a pretty in depth workup which
    included extensive family histories, etc.  In her case, the geneticist
    was able to conclude that the odds, nothing is guaranteed here, were in
    her favor for having a healthy child, which she did.
    
    Since I was the only one she and her husband confided in during this
    time we had some pretty intense discussions about what to do. 
    Basically we discussed carrying the child to term and then discovering
    it had severe handicaps. (She and her husband had already decided that
    if the news from the doctors was exceptionally bad they would terminate).
    
    Are you mentally, physically and financially capable of caring for a
    sick child?
    
    How would a handicapped child affect the family as a unit, in your case
    your other children, in their case future children?  And your marriage,
    it sounds like you and Marc have a wonderful marriage, but the stresses
    could be significant and people act strange when under duress, are you
    BOTH ready to do whatever it takes. 
    
    What about care for the child if you and/or your husband die?  Do you
    have family that would and be able to provide the constant (expensive?)
    care that the child needs?
    
    These are just some of the things that we talked about during that 4
    week wait, it was hellish having to know that someone I love had to go
    through this, but I can't imagine what it was like for her (and I was
    pregnant at the time, too).  It's awful having to think about the
    worst, therefore, I wish you only the best!
    
    Susan

    Based on problems with my first pregnancy, the medical personnel 
    involved in my second pregnancy were prepared to look for specific
    abnormalities, deformities, etc.  Went through all kinds of tests,
    the worst part of which was my worrying and making myself crazy.  
    Without fail, every night as I lay down to sleep I put myself 
    through "what if" scenarios: what if the baby is... would I ...
    Made myself nuts, hardly slept and we all know we don't sleep well
    through pregnancy anyway, eventually stressed out, and the physical
    ramifications put me out on disability two months early, two months
    basically spent in bed.
    
    Our daughter Jeanne is absolutely fine, beautiful healthy girl.
    She continues to undergo testing to make sure things are okay,
    am beginning to believe in my heart she will be healthy from here
    on.
    
    If I were to go through pregnancy again, and if I felt in my
    heart that I would take my baby "as is" without intervening the 
    pregnancy, I would refuse the tests.  Period.  Having lived through
    the awful anticipation, tests themselves and waiting for results,
    I would fall back on my religious background for faith, and take
    whatever comes.  If a test gave me a result that was used to treat
    the fetus/baby for future positive results, that's one thing, and
    I would likely authorize that test, to then use results to decide
    on a potential treatment to correct a problem.  But if 
    it's just for information, which my tests were, where nothing 
    could be done, I think (based on my experience) I would refuse.  
    This comes from someone who worries, and makes herself crazy.
    
    How difficult, wish you the best.  My only other thought is the
    world may offer you advice, you need to decide, stick to your decision
    and don't look back.  To some extent whatever you decide will give
    you some "Monday morning quarterbacking", should have..... but only
    you can decide.
    

    Wendy,
    
    I'm so sorry for you an Marc.  
    
    I had a similar (though not as drastic) situation with my 2nd son,
    Jason.  We weren't Planning on having another baby, but as soon as we
    knew I was pregnant, were delighted.  Then I went to the Drs.  They
    said that my blood sugar (I'm diabetic) had been SO high that a)the
    pregnancy would probably terminate naturally, b)if the pregnancy didn't
    terminate, he would probably die as soon as he was born, and c)even if
    he did live, there was a 40% chance of a SEVERE abnormality (missing
    organs, deformities, things that COULDN'T be corrected).
    
    That was more than we were willing to live with, and we felt it would
    not be fair to Chris to have to devote the rest of our lives to his
    potentially sick sibling, or to us to have to grieve for the rest of
    our lives about "what he might have been like" if the baby was healthy.
    Since I had no problems getting pregnant, we decided to terminate the
    pregnancy, and try again later.  It was the hardest decision I've ever
    made, and there wasn't one good thing about it.
    
    When we got to Concord, and I was all drugged up, the Dr was about
    ready to go, and concerned why I was blubbering ... we told him our
    "story", and he disagreed about the risks.  We put everything on hold
    at that point, contacted several other Drs, and found that the first Dr
    was very inaccurate.  The pregnancy would've already aborted for the
    more severe risks.  It hadn't.  The risks that there were, were very
    much isolated (mostly heart deformities), and some were even operable.
    The risk of there being any problem at ALL was only 20%.  THIS was a
    risk that seemed worth it.  The other part is that we were also offered
    a high-level ultra-sound in boston, to be done at 23 weeks, where they
    could examine the baby's heart and tell then what, if any, deformities
    we were up against.  We had until ~26 weeks to legally terminate the
    pregnancy.  The tests came back ok, and Jason is the apple of my eye -
    maybe because we had to "fight" so hard for him.
    
    I don't KNOW what I would have done if those tests had come back "bad". 
    We had committed that we would not continue on if they were bad because
    the quality of his life would be so negatively affected.  I still
    wonder if I could have stuck to that decision.  
    
    You need to arm yourself with as much information as possible.  What is
    an acceptable risk to you?  Can you try to think about that BEFORE you
    know the results of the tests?  I found it was easier to make decisions
    ahead of time "If it says xxx then we do bbb" 
    
    And my biggest gating factor of all, was that I FELT that that baby was
    Fine.  Maybe that's not a very good thing to base a decision on, but he
    really did feel fine.  It's interesting to think of now, because I
    always felt that there was "something not quite right" with Jonathan
    when I was pregnant with him, and he's been sick since he was a few
    weeks old, and now they want to do tubes at 8mos, and he's just never
    really been "healthy".  Maybe you can ask your gut?
    
    In the end, given what you've told, and knowing some other things in
    your life, and trying to accept that you don't seem to be running a
    string of good luck, and all the stress you already have with DEC and 2
    kids and houses etc etc .... can you deal with 6 months of wondering??
    If it was my decision, I think I would be forced to choose the sadder
    one, and stop the pregnancy.
    
    One other thing .... until that test with Jason came back ok, I never
    DARED myself to get attached to that little baby.  It was so hard
    because I wanted to rub my tummy and talk to him, but always knowing
    that he might die made it too hard to allow myself to get close.  The
    stress is unimagineable.
    
    If there's anything you need, please ask...

    Wendy,
    
    No matter what decision you wind up making, I know it will be the right
    one for you and your family.  
    
    Viral diseases that can cause birth defects are scary, as is the extent
    of damage they can do in the first trimester.  I can't tell you or
    anyone else to do, but I will share with you what I would do given
    several options:
    
    	1.  Fatal birth defect.  For me there is no question, I would
    choose to terminate that pregnancy.  I have a friend sho spent 6 months
    helplessly watching her son die with a rare inherited defect that
    strangles all the vital organs.  After seeing what she, her husband and 
    the baby went through, I realize I couldn't knowing do that to a baby
    or the rest of my kids or partner.  
    
    	2.  Serious birth defects which are potentially fatal, well that is
    a judgement call, and I would need to know what the odds were, what
    surgery would be required, if any, and possible complications, before I
    could make a decision.  
    
    	3.  Serious defects, such as blindness, deafness, etc.  I don't
    know.  It depends on how strong my feelings were, how strong your
    family ties are and what you feel is "fair" to your family and the
    littlest one.  
    
    	4.  Major defects including potential nerve damage.  Here again, I
    would have to assess the odds, and the worst case  scenarios.  I would
    need to asses the impact on the the child  and the rest of the family. 
    This is something only you and your partner can decide.  Am I 
    prepared to deal with a child who may never grow up?  Is my partner?
    
    Wendy, I really feel for anyone in this situation, particularly knowing
    how much you wanted this pregnancy, and the baby that might follow.  
    You and yours are in my thoughts.
    
    meg

Wendy,

I can't tell you how sad I am inside hearing about your situation.
I feel slightly inadequate to not be able to speak from personal 
experience, but I can only share my feelings as someone who would be 
unknowing like yourself.  You'll weigh everyones thoughts against 
your own, to know your own thoughts better...

Personally, I couldn't take responsibility to terminate a pregnancy 
myself that has the chance of being a healthy child.  And my philosophy 
favors the love and joy and learning from what may be a handicapped child 
over the fear of potential expences... that may be draining but where
there is a hope of making do.  Any love we can share is such a gift!

I think the scariest part is knowing the energy it will take to cope,
regardless of what happens, especially when you are so drained already.  
I hope you will lean on those who want to help, councelors, pastors, parent 
support groups, and a friend or two you really trust.  And from personal
experience, please believe me, prayer helps!  Don't try to do everything 
on your own  (with your husband included)!

With love, Tanya

    
    Wendy
    
    Hugs to you and your family.
    
    I think .8 says so much about the roller-coaster of a difficult
    pregnancy. Please see my note in the last volume of parenting (not sure
    of the number, but it's under AFP testing and also talks about the
    Bart's test and the use of the high-intensity scans).
    
    I was considered a "problem" pregnancy since I lost Rebecca's twin and
    was lucky enough to be cared for by a hospital with a high intensity
    ultra-sound machine. It wasn't until we got the "all clear as far as we
    can tell" on the second of these scans that we started to decorate the
    baby's room and buy things for her. .8 is right - you can tell if
    things are OK - I knew in my heart that Rebecca was fine, but needed
    the scientific facts put in front of me. But do remember that the
    doctors can only give you statistics - nobody can be 100% sure one way
    or the other. We had decided that if things were not OK, we'd have a
    termination but have to lie to Dave's brother's family and say it was a
    late mis-carriage due to their very Catholic standing.
    
    Sorry to ramble, but listen to the doctors, get the best opinions you
    can (I had my care moved from the local hospital to the best maternity
    unit in the country by my GP - I'm lucky that I live so near to it!!)
    and weigh up what they say. Listen to your heart - do you feel the baby
    is OK? Could you cope with the stress of continuing the pregnancy or
    bringing-up a handicapped child? What about your other children and
    your marriage? You are fertile, why not try again when you are ready?
    
    This is difficult to say, but look at the scientific facts and think of
    Marc and your sons. 
    
               hugs again
    
                       seals
    
    
    
    
    
    not looked good.   

    Hi Wendy,
    
    I feel so badly for you and Marc and your boys for all of the 
    awful things you have been going through the last couple months.
    I keep you in my thoughts alot and hope that everything will work
    out for the best very soon.  
    
    After reading this note yesterday I started to remember how I felt
    when I got pregnant with Katie at age 35 and they recommended that
    I have an amnio done.  I knew that they might but I wasn't really
    sure if I wanted to.  David and I discussed it a great lengths for
    days and finally made the decision to go ahead and have it done,
    still not quite sure what we would do it the results were not good.
    Well, they were not able to do it and I think I was more relieved
    than upset because we were not put in the position of making a tough
    decision. Katie was born healthy, thank goodness.
    
    When I got pregnant with Kendrick (unexpectedly) fourteen months later
    and they again suggested amnio I said okay because I really thought
    that the same thing would happen again and the decision would be taken
    out of our hands.  They were able to do the amnio with him and we had
    to wait the usual two to three weeks.  These were the worse weeks I have
    ever gone through in my life!!  We did not know up until the results
    came back what we would do.  I have a brother who has Cerebral Palsy 
    and I saw what my mother and father and he as well went through and
    are still going through to this day and I just wasn't sure that I 
    could do it. I had told myself that I would probably abort the baby
    if it had Downs but I still to this day don't know if I could have 
    done it.  Kendrick was born healthy as well.  I grew up with someone
    who has struggled his entire life and still struggles and the decision
    on whether to terminate or not still did not come easy to me.
    
    I only know for sure that I WOULD have aborted my baby if they had told me
    that the baby had a fatal deformity.  I personally could not have 
    mentally carried a baby thay I knew would die immediately after birth
    or would eventually die from its deformities.  I feel that I would have 
    probably had an abortion if they told me that the baby would
    be brain damaged; only because I would be thinking about the children
    I already had, whether we could afford it financially (which we could 
    not) if the baby needed around the clock care, could our marriage 
    survive (my parent's did but my father never really has bonded with my
    brother to this day), and what kind of life would this baby have?  
    
    Tough decision to make, but you should know that what ever decision 
    you make (if you have to even make one) it will be the right decision
    for you and your family and no one can really make it for you but you.
                    
    You will be in our prayers,
    
    Vickie and family    
    
                                              

    
    
    Wendy,
    
    I am sorry that you are going through this nightmare.
    
    Only your own convictions and philosophy of life can tell you what is 
    right for you and your family. But as far as I am concerned, I would 
    give a lot of thought to: is my child going to have a defect that will 
    make him/her suffer a lot, what will be his/her quality of life, if the 
    child is severely handicapped and survives me, who will take care of 
    him/her, when he/she is 20, 30, 40 years old etc...
    
    Now I apologize for the gloominess of this note. And I hope with all
    my heart that everything is going to turn fine for this baby and that
    you will not be faced with making this type of decision.
    
    Patricia.
    
    
    

    	Thank you all for your replies both here and through mail. Many of
    you keep saying how strong I am (of which I feel not) but I assure you
    that I am nothing compared to some of the strength that is within the
    members of this notesfile.

    	Thank you for raising points that we need to consider, it is
    probably not hard to believe that the people here have been more
    tolerant and objective than the people in our immediate family. It's
    difficult to be objective when you are in the midst of it all.

    	We do not have to make a decision yet, we need to gather all of the
    information that we can and once we have all of that, we will have to
    make a choice. I believe the timeline is that the tests will all be
    done in the next 7-8 weeks (a lifetime).

 	I will tell you that at this point, I feel more like I have a
    disease than I feel like I am pregnant.

    	Thank you again for your honesty and support.

    				Wendy

Hi Wendy,

I've been following your last series of notes and wish 
to send you my thoughts and prayers.  You and Marc have
been through a lot these past months and this present
trial you are facing is indeed a harsh one.  The only
advice I can give (and you already know my situation)
is take each day as it comes - filter all information
you receive (medically that is) and then you and Marc
make the decision that is BEST FOR YOU! and your
family - NO ONE ELSE!  And what ever decision you both
make prepare yourself for the future - what ever it ends 
up being.  

Remember - you have friends here at Digital - if you
need anything - sometimes it helps just knowing 
people care!


Donna & John

    Wendy - my heart and hugs go out to you and your family.  I found the
    following poem in a file I keep at work, and thought you.  Remember,
    it's hard - but important - to take a few minutes to relax and think
    of yourself too!
    
    SLOW ME DOWN, LORD
    ------------------
    
    Slow me down, Lord.
    Ease the pounding of my heart by the quieting of my mind.
    Steady my hurried pace with a vision of the eternal reach of time.
    Give me, amid the confusion of the day, the calmness of 
      the everlasting hills.
    Break the tensions of my nerves and muscles with the soothing music
      of the singing streams that live in my memory.
    Help me to know the magical, restoring power of sleep.
    Teach me the art of taking minute vacations - of slowing down to
      look at a flower, to chat with a friend, to pat a dog, to read
      a few lines from a good book.
    Slow me down, Lord, and inspire me to send my roots deep into the 
      soil of life's enduring values that I may grow toward the stars of
      my greater destiny.
    
    
    
    There is also another one, that always helped me through tough times,
    I'll try to remember it all.  I don't remember the title, but it goes
    something like this:
    
    
    When things go wrong, as they sometimes, will;
    When the road you're trudging seems all uphill;
    When funds are low, and debts are high;
    When you want to smile, but you have to sigh;
    When care is pressing you down a bit,
    REST IF YOU MUST, BUT DON'T YOU QUIT!
    
    Life is queer, with it's twists and turns,
    As every one of us sometimes learns.
    Success is failure turned inside out,
    The silver tint in the cloud of doubt.
    So stick to the fight when you're hardest hit,
    IT'S WHEN THINGS SEEM WORST THAT YOU MUST NOT QUIT!
    
    
    Barb
    

    I'm praying for the safety and health of your littlest one.
    
    The only thing that got me through my high-risk, problem-ridden 
    pregnancy was taking a few minutes every day to VISUALIZE A WONDERFUL
    HEALTHY BABY.  We spend so much time thinking/dreading/agonizing over
    all the potential problems--just take a few minutes to focus your
    energy on everything being OK.  It certainly can't hurt, and it might
    just help.  
    
    Lots of support from a perfect stranger,
    
    Linette     

Just another perspective from the father of a child with a 'serious defect'
(re: .9). We had all the tests done (negative), had a low risk pregnancy with 
a slightly higher risk birth (C section due to breech birth), and yet we still 
had a deaf child. We still don't know why and probably never will.

Patrick has taught me so much. I wouldn't give him back for anything. He's
doing so well...he's learning to overcome his 'handicap' and has shown us
every indication of living a happy, productive life. I'm so very proud of
my deaf son.

You asked for opinions...unless the tests show that the fetus has many serious 
defects which threaten it's life, and possibly yours, then I would go ahead
with the pregnancy. 

Good luck with this difficult decision,

Chris