Devastating news today ****UPDATE**** - Mothering Forums

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#1 of 22 Old 04-13-2006, 07:34 PM - Thread Starter
 
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**UPDATE**
First I want to thank all of you for your support. It really means so much for me to know there are other people who understand how difficult this has been.
I went back in yesterday and got the results for my second AFTP. The numbers were higher than the first. Not good news. They did an amnio and I am just waiting on those results, which should come today or tomorrow. The second Level II ultrasound didn't tell us much this time around, only that there was something going on in the brain (fluid and large head) and possibly something going on in the lower back. I will post another update when we get our amnio back. Thanks again, ladies, for everything. It means so much to hear your personal stories and your comforting words in this difficult time.


I don't know if any of you have had experience with this, but I never dreamed this would happen.

I went in last Thursday for my regular Dr. appt. and the nurse asked if I had had a quad done. I asked her what it was, and she just said "it's a blood test that we do between 16 and 18 weeks." I thought it was normal, so I just went with it. Yesterday, my nurse calls me five times telling me I need to call her ASAP because they had gotten the results from the quad and they were high. Unfortunately, I got the message after she had left, so I had to call today. Since I was seeing a specialist today for two ovarian cysts, she explained to me that they were also doing a level II ultrasound to also look at the baby, but not to worry. Right!
Anyway, after seeing the specialist and doing the ultrasound, the Dr. says he sees two of the three of the five factors (including the bloodwork) present for Spina Bifida. Most of the evidence is in the brain (enlarged and abnormally shaped head and fluid around the brain). Then he starts talking about what that could mean for the child: severe physical disabilities or paralysis, difficulty with processing and motor skills, uncontrollable bowls, etc. I'm devastated! They redid the AFP and want to do another Level II next week. He said his very last option would be an amnio and only if I wanted it.
Has anyone ever had any experience with this? I just don't know what to do.
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#2 of 22 Old 04-13-2006, 07:41 PM
 
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I'm not usually for tests, for this sounds scary. I had high AFP levels, and said no to amnio, since the chance of losing the baby was 2%. However, in your case, I think I would take the tests. Hugs, is there someone else you can talk to about this? Also check in with your intuitive feelings, that also helps, although if you're freaked, it's hard.

Hugs again with this, sounds very scary. I hope someone can be more reassuring.
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#3 of 22 Old 04-13-2006, 08:50 PM
 
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that does sound very scary, lesty...
i do know that in some cases of spina bifida, there is very little disability for the child. i don't know how often this happens, though.

i suppose the question you need to ask yourself is if knowing this information will affect continuing to carry this baby. the quad screen is a SCREENING test, not a definitive, and merely tells you risk for having a child with particular disorders. combined with the ultrasound, however, the status of the risk can be more certain, but again not a definite. inquire about the certifications of the ultrasound technician and how often this particular disorder occurs and how many they have previously detected.

if you feel strongly that you will continue with this pregnancy, then knowing this information about your baby can help you make birth choices and postnatal care choices that can only help your little one. i do know that many babies with spina bifida benefit from being born via cesarean, and you have the time in advance to interview perinatalogists that most closely match your goals for your birth and for the care of your child.

please know that i am thinking of you and your growing little one and wishing you lots of love and peace and wisdom...

~claudia
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#4 of 22 Old 04-13-2006, 08:57 PM
 
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I'm so sorry to hear that you are in this situation. I don't have any direct experience of it and all I can say is that you must keep asking questions of your doctors until you are content with what they are telling you.

Risk as defined by percentages or numbers is so difficult to deal with because neither they nor you can know many things for sure. What is for sure is that this is your baby and you need to be comfortable with how you and he or she are treated.
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#5 of 22 Old 04-13-2006, 09:18 PM
 
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How far along are you? if you are DID you should not have had that test yet.
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#6 of 22 Old 04-13-2006, 09:34 PM
 
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I'm crashing your DDC with a possibly slightly reassuring comment.

My grandmother has spina bifida. It resolved almost entirely before birth and she has never had any serious disability as a result. It can be debilitating, but it can also be no big deal. It was discovered in her fifties when she was getting some unrelated procedure, as there was obviosuly no screening or U/S when she was born.

I know that you will be preparing for all possibilites, just wanted to let you know a personal story of a good outcome.
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#7 of 22 Old 04-13-2006, 09:49 PM - Thread Starter
 
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Thanks for your support, ladies. I am so grateful to hear of success stories. Thanks, tie-dyed. I am trying to stay positive and remain hopeful, at least until my 2nd quad comes back. He did say he would have to treat it as a SB case for now, which stinks. Oh well.
Gilli, I am not sure what DID is (due in December?), but I am 17wks and 3 days. They did the test at 16w3d.
Thanks again, Ladies. Any other good outcomes would be well embraced.
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#8 of 22 Old 04-14-2006, 12:58 AM
 
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I don't have any additional information to offer, but I did want to wish you luck and good vibes as you go through the rest of the testing. Hopefully they will be able to process the test results quickly and get you all of the information that you want/need.
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#9 of 22 Old 04-14-2006, 03:45 AM
 
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I hope you are doing good. Hopefully your baby will be fine. I have heard of surgeries they can do for spina bifida before the baby is born, but i dont know much about that. Good luck with everything.
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#10 of 22 Old 04-14-2006, 09:20 AM
 
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I can't imagine how upsetting this is for you. Just wanted to offer my thoughts and . Please keep up updated.

Paige, mama to three girls, (10), (8) and (3)
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#11 of 22 Old 04-14-2006, 10:46 AM
 
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Barge from due in August


I can't imagine anything scarier than hearing your child's health is in question. I felt FURY though when I read some of the doctor's comments about your baby's POSSIBLE prognosis. I worked with children with special needs for years, which included kids with varying degrees of spina bifida. The medical community has no right to already try to pinpoint what this child's potential might be. You're only 17 weeks pregnant! Arm yourself with information. Ask questions, get second and third opinions. One important question to ask is where the defect on the baby's spine is located. The lower the defect on the spine, the less severe the symptoms. Take things one step at a time. Please know you have the support of those of us here at MDC. There are a number of other reources out there for you that might help you. If you are interested I will post a link. You may want to search on your own, or just digest what you've only recently been told.

Thinking of you,
Hilary
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#12 of 22 Old 04-14-2006, 10:53 AM
 
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Has your doctor told you about the very, very, very high number of false positives that come from the AFP test??????? I had an AFP that showed a very high chance that I was carrying a child with Down's syndrome (the same test is used for both -- different numbers on the test indicate different problems), had a level 2 sonogram and an amnio, and my little guy is just fine.

After having done much more research, I've discovered that the AFP is NOTORIOUS for giving a large number of false positives.

Of course you're scared. Find out everything that you can, but please don't just assume that this test result is an absolute.

Hugs,

--Olive
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#13 of 22 Old 04-14-2006, 10:58 AM
 
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I'm not pregnant, but this post came up on page one...

When I was pregnant with my son the AFP came back with a higher than normal probability of Spina Bifida and I was scared to death. We went on to have a Level II ultrasound, and the doctor said that he was 70% sure everything was fine, but that he recommended an amnio just to be sure. We discussed it, decided to do it, and half an hour later it was done. The amnio showed that everything was fine with our son. He's now the handsomest, sweetest, bestest eight year old boy in the world!

I remember how scary it was though, and if you ever want to talk, please feel free to PM me.

Remember, the AFP, quad screen, whatever only shows *probability* of a problem. They don't say there *is* a problem, and there is no such thing as a "false positive". If you have a 2% chance of getting hit by a car today and you don't, you don't say that it was a "false positive", know what I mean? The test you took is saying that the probability of Spina Bifida is higher than in a "normal" pregnancy, but it is not saying that your child has it.

I'll be praying for you and baby, and again, if you ever want to talk please feel free to PM me.
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#14 of 22 Old 04-14-2006, 02:49 PM
 
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My heart aches for you... sending hugs and positive thoughts your way...
knowledge is power, find out all you can and then make any decisions.
V.
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#15 of 22 Old 04-14-2006, 02:52 PM
 
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Quote:
Originally Posted by mmace

Remember, the AFP, quad screen, whatever only shows *probability* of a problem. They don't say there *is* a problem, and there is no such thing as a "false positive". If you have a 2% chance of getting hit by a car today and you don't, you don't say that it was a "false positive", know what I mean? The test you took is saying that the probability of Spina Bifida is higher than in a "normal" pregnancy, but it is not saying that your child has it.
This is a much better explanation of what I was trying to say. Thanks!

--Olive
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#16 of 22 Old 04-14-2006, 03:13 PM
 
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One thing I've learned at Mothering and elsewhere is that the dr.s can possibly help us if we do have a problem but they also will see "problems' that arent really there making it a confusing and terrifying time at times likes this. So, it is wonderfully true what the mamas here are telling you about false positives and getting fully informed with all the information regarding your situation and others similar to it.

knowledge IS power, get all you can and hang in there. I dont think you need to be devastated although you feel it. I also am in agreement with the poster who is furious that the dr.s tell you what the outcome COULD mean but apparently didnt tell you The the real liklihood of this being faulty.
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#17 of 22 Old 04-14-2006, 03:16 PM
 
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Quote:
This is a much better explanation of what I was trying to say. Thanks!
Oh good! We cross-posted (yes, I'm that slow!) and I was afraid you would think I was trying to contradict your post...
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#18 of 22 Old 04-15-2006, 08:00 AM
 
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i JUST posted about my hydrosephalis baby on the "are you have an ultra sound thread".

i had an ultra sound at around 17 weeks when i was pregnant with my 2nd baby.
(my first was a M/C at 2 months, my 3rd is my fabulous 2.5 yr old dd, and my 4th is my preg now)
anyway, the specialist said that it hydrosephalis and that it had an extreme amount of water in the brain area and had "very little brain at all".

is had just turned 21, had already lost one baby, was TRYING to graduate from college (infact i was in the begining of doing my student teaching), so was my dh, and i was OVERWHELMED. (side note: i had gotten pregnant using birth control: the cervical cap)

i did not know to question his diagnosis or even get a SECOND opinion or a SECOND US done in a month.

he told me that
i would carry full term,
the head would be huge b/c of the fluid so a natural birth would be impossible and a C section would be my only option,
and the baby would be a "vegetable" and would not live longer than a few days.

can you migaine?

i could not fathom getting that big and preg and having strangers all over patting my belly and asking me questions with stary eyes like" when are you due?"
much less while i was trying to continue my student teaching, i also could not handle the looks of pity from the people who would know.
all for what? a baby that was born to die?
so i decided to attempt ending the pregnancy with abortive herbs.
and it eventualy worked (3 weeks of drinking the tea i went into labor and had the baby...a boy at 20 weeks)

OK fast forward...
i know now
that those tests/all tests done in utero can be very very unreliable and the chances of the baby even really having it are questionable,
that even if your fetus is diagnosed with extreme problems, science has NO right to put any permant lable on that child and their future...the baby can easily correct itself in utero,
and that there are TONS of hydrosephalis adults walking around that have had VERY normal lives, most with no issues at all...i have had the painful exp of meeting them over and over in the recent years.

and who can say that if there WOULD have been an ultra sound done on them (they were not invented when they were in utero)
on some random day at say 17 weeks, that the tech would not have seen an alarming amount of fluid. but for all of the reasons i listed above, the baby still grew up to be fine.
and it was probably (in my opinion) a GOOD thing that those mothers did not have to spend 20 weeks worrying about the probability of hydrosphalis.
if you have any faith in the power of prayer or manifestation, then you know that teh more energy you throw at some idea the more likely it is to take shape.
i think that the mother baby relationship while in utero and during birth are the GREATEST exp of this ability.
and that is why many people do not even have those tests/US done. (me included)
it is much more powerful for those people to just focus on making a healthy baby, instead of letting that image of a "damaged" baby become reality in their minds when the TRUTH is
NO ONE KNOWS till the baby is born.

so i do not regret my choice to end that preg....i can not.
i was young and doing the best i could at the time....and it has become a very important part of my mothering journey,
but i will not have an u/s in this preg and i will not EVER take one Dr's opinion as a COLD HARD FACT ever again...
in fact, i do not want to spend much time period with drs in our current modern medical model ever again. (that is why i am having a home birth with a midwife)
i was told this news and did not even KNOW to think: maybe he is wrong?
now, that would be the FIRST thing i would think.

please PM me if you need me.
i hope my exp helps you feel more empowered to tune into yourself and your baby and manifest a healthy baby.
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#19 of 22 Old 04-15-2006, 09:56 AM
 
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Popping in from October with some reassurance:

A family that grew up down the street from us - and that our family is still very close with - has four boys. Their third was born with spina bifida. Although he does need a bit of help walking, he's a vibrant, intelligent, funny young man.

Another aside: My mom went through testing and found out that my brother - now 17 - had Down's Syndrome. The doctors gave her every worse case scenario out there. Heart failure, stillbirth, etc, etc. They encouraged her to terminate the pregnancy, which she refused to do. Even after she said 'no' to an abortion, they kept pursuing her with 'probable outcomes' for her child. My aunt, an OB nurse at the time, even went so far as to tell my mother that my brother would only be a burden on the taxpayer, if you can believe that.

Anyway, all that to say that sometimes people have their own agendas, professionals and otherwise. For whatever reason, nobody wanted her to keep the pregnancy. And although my brother has had some medical ups and downs in the first few years of his life, he's very healthy and happy and hilarious. We just love him to pieces! I can't imagine our lives without him. Sometimes it has very little to do with YOUR pregnancy and more to do with people's views. Your baby is a baby to you already, but for many people won't become real person until the birth. Please keep that in mind as you go through your pregnancy.

Take care
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#20 of 22 Old 04-16-2006, 12:16 AM
 
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One of my daughters has Spina Bifida Occulta.
She also has another minor birth defect (congenital 3rd nerve palsy).
She is a happy, confidant, well-adjusted (and ultra-intelligent) child. She is in her 7th year of dancing. She is on the track & field team at school right now. She reads at a post-secondary (college) level, is a tallented artist & intending to become an author.

We (thankfully) didn't know that they was anything 'wrong' with her before she was born...but I shudder to think of what her 'outcome' may have been if we had known. Would we have chosen to terminate? I don't know...but I thank God that we never had to make that decision...

You don't really know (and neither do medical 'professionals') what your child's future holds or what level of 'defects' they might have.
Try not to worry about it. They may very well be wrong. Or it may be something very minor.

((hugs))

Mama of 2 boys, 5 girls.grouphug.gif

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#21 of 22 Old 04-19-2006, 01:13 AM
 
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I'm facing a possibility of spina bifida right now as well. I've got the level II on tuesday. I still haven't heard back about the quad screen, so I'm hopeful. We have known from the beginning that this was a very real possibility because of the medication I was on the first 6 1/2 weeks. I really don't even have a preference as to boy or girl this time (seems strange to me), I just would prefer a healthy baby. I am confident knowing that no matter what happens, I could not possibly love my baby any less. If something is wrong, no matter how many times the doctors call my baby "the fetus" it is my baby and nothing less. Now that this little one is on it's way, I can't imagine life without it...and we weren't planning on having more for about six more years. I could never abort my child, no matter how sever the handicap. I would much rather carry my baby to term and hold it for a breif few minutes and then say goodbye, just to know I hadn't missed out on any joy they had to offer. We have given this a great deal of thought with all of the possibilities we are facing right now. I can honestly say if would be nothing but relief that could stem from our upcoming ultrasound. Although the closer it gets the more real all the possible findings become. Thank God for faith!
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#22 of 22 Old 04-19-2006, 10:19 PM
 
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I don't have any words of wisdom for you, but just wanted to send a your way and let you know I've been reading your thread and hope you are doing okay during this difficult time.

Keeping busy with 2 boys & 1 girl ('04, '06, '08)
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