# oh my goodness....did I make the right choice?



## organicpapayamama (Dec 5, 2008)

My dd1 had a ntd, Anencephaly, back in 2007. We (dh at the time and I) chose to induce because it was a "condition that was not compatible with life." Plus we felt very rushed to make our decision. I just saw this video on CNN of a baby boy that has Anencephaly and just turned 1.

http://www.cnn.com/video/#/video/us/....baby.pkg.koaa

I am in shock and just speechless and am questioning if we made the right choice with dd1. I just feel like crying. Im happy for that mama in the video but Im questioning everything I thought I new about this.... The baby in the video did have a closed neural tube (closed head) which i think helped in his survival so far... dd1 did not have a closed neural tube ... at least when she was born at 21 weeks. Who knows if it would have eventually closed. Im just stunned and its hit me all over again... like I just lost her today.... its probably even worse now that I am pregnant again with her little sister.....


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## stillparenting (Apr 25, 2009)

My sister had a baby with no brain, no eye, no nasal passages, etc. He wasn't expected to live to birth. He's now turning five.

But there's really no point in speculating about your situation. You'll never know. You did what you thought was right at the time.

Hugs!


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## Jane (May 15, 2002)

Why not call your daughter's doctor and ask her?

In all my learning, the open neural surface is the key, as no brain or spinal tissue will grow if it's touching amniotic fluid. Even if it closes later, the development hasn't happened. I suspect, just from that information, that you made a good decision. Carrying her further would have put your life and/or fertility at risk.

After watching the video...I am conflicted about the information portrayed. If he is unable to swallow (a pretty basic function) I doubt he's smiling. That seems misleading to me.


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## columbusmomma (Oct 31, 2006)

You made the best decision for the baby and your family when this occured, therefore you did make the RIGHT decision for your family.


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## NoraFlood (Dec 21, 2008)

I am so sorry for your loss, mama.









I recently terminated (but with D&E, not with induction) due to a terminal fetal diagnosis of trisomy 18, so I understand what that decision is like. It is unbearable. But you were acting as a mother acts, instinctively--in the best interests of your daughter. I firmly believe you made the right decision for your family. Yes, this family did not terminate, and again--they made an agonizing decision based on the information they had and what they believed was best, and their decision was right, too.

As for your particular situation, my understanding is that amniotic fluid erodes any brain tissue that might develop, so the fact that the NTD was open means that your baby's prognosis was exactly as it was explained to you--incompatible with life.

I also question the smiling and laughing thing as presented in the video. The family has observed things that appear to be smiling and laughing, but I imagine they are just reflexes. If they give that mama comfort, then I'm glad they're happening...but I am very dubious that they represent anything resembling what happens when a baby normally smiles or laughs.

I am sorry you are feeling the way you're feeling right now. This is a very lonely path, and I have gotten the sense that there are very few mamas on MDC who have terminated due to poor prenatal diagnosis. I only know of one other besides me (if there are some others, they ain't talking). Please PM me if you want to talk about it more with someone who gets it.


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## cappuccinosmom (Dec 28, 2003)

It's useless to speculate now. What happened, happened. To have questions like this is why we would never terminate, no matter what the diagnosis. I can't imagine how much this is hurting you.


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## organicpapayamama (Dec 5, 2008)

thank you all for your kind words. I really hate the word terminate. I didnt choose to terminate the pregnancy as far as I am concerned. I am anti termination and would have loved to have any living child with whatever disability. But the way it was put to me was that there is no hope. I saw it as turning off life support. It was the hardest decision of my life and I have to say maybe I was a little selfish because I remember thinking the longer I stay pregnant the longer it will be before I can ttc again and I needed another one to help me deal with the pain. either way, i know I cant change anything but it makes me think twice about the situation.... God I miss her so much. No baby, boy or girl, will ever replace her.


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## Jules09 (Feb 11, 2009)

My story is similar to yours, although we didn't have a pre-natal diagnosis, but rather a post-natal one. My husband and I chose to remove life support from our son when he was 8 days old. The doctors told us that they were 99.9% sure that he would have a very, very poor quality of life, due to very extensive bleeding in his brain after a feto-maternal blood transfusion. Of course there are always miracle stories out there of children who defied the odds, and didn't go on to have the disabilities that the doctors said they would have. But for each of those miracles, there are the other 999 children who did fulfill the poor prognosis that the doctors predicted, and that was not a risk we were willing to take with our son. We didn't want him to have a short life full of pain, with no hope. Unfortunately there are some outcomes worse than death, and we thought that our son's prognosis was sadly in this category. I know this is a very sensitive topic, and not all people will agree, but this was the decision we chose as the right one for our son.

There were times when, just for a second, I would wonder if we did the right thing. But then I thought about how sad it would be to have my son hurting, not knowing what was going on, not able to communicate, swallow, sit, see or understand, and that would break my heart even more than it does not to have him here with me.


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## Vancouver Mommy (Aug 15, 2007)

Mama, I'm so sorry for your loss. You made the right decision. It was a terrible decision to have to make and you made the one that was right for you and your family. Second guessing can't change the tragic circumstances under which you had to make a gut wrenching choice where there could be no hope for a happy outcome. You made the right decision.


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## NoraFlood (Dec 21, 2008)

Quote:


Originally Posted by *organicpapayamama* 
thank you all for your kind words. I really hate the word terminate. I didnt choose to terminate the pregnancy as far as I am concerned. I am anti termination and would have loved to have any living child with whatever disability. But the way it was put to me was that there is no hope. I saw it as turning off life support. It was the hardest decision of my life and I have to say maybe I was a little selfish because I remember thinking the longer I stay pregnant the longer it will be before I can ttc again and I needed another one to help me deal with the pain. either way, i know I cant change anything but it makes me think twice about the situation.... God I miss her so much. No baby, boy or girl, will ever replace her.

I'm sorry, I didn't intend to upset you by using that word. "Termination" has connotations that not everyone is comfortable with, and "turning off life support" is a much more apt description.


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## KatWrangler (Mar 21, 2005)

I have a child with a NTD. I couldn't read without offering you a hug.


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## Megan73 (May 16, 2007)

I'm so sorry you're feeling this way, mama








I'm frustrated by people who say they'd NEVER end a pregnancy. It's easy to say that when you haven't been there.
Like Jules, I lost my first baby to a fetal-maternal hemorrhage. She was stillborn at term but I have since encountered mamas who had to make the wrenching decision to cut off life support because their babies survived what mine didn't.
You made the best decision you could with the information you had at the time and the desire to spare your little one suffering. Seeing one "miracle" doesn't change that.


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## NoraFlood (Dec 21, 2008)

Quote:


Originally Posted by *Megan73* 
I'm frustrated by people who say they'd NEVER end a pregnancy. It's easy to say that when you haven't been there.


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## cappuccinosmom (Dec 28, 2003)

Quote:

I'm frustrated by people who say they'd NEVER end a pregnancy. It's easy to say that when you haven't been there.
I can't speak for anyone else, but when I said it, it wasn't said flippantly or without consideration.


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## momz3 (May 1, 2006)

I really don't have any words, but thinking of you


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## sept04mama (Mar 3, 2004)

We had to make the decision to withdraw support or not the day our son was born. His condition (CDH) has a 50% survival rate. When I see all the survivors of this terrible birth defect I sometimes wonder if he would have lived longer had we tried, after all we made the decision after having been up all night giving birth and we were exhausted.

But when all is said and done- I know we made the right choice for US. And I think that going with your gut reaction is often the best one. It does no good to deliberate or consider the what ifs. There will always be exceptions & miracles. That doesn't mean we're entitled to them every time something goes wrong, but it does help us appreciate the miracles even more.

Live your life and remember your daughter- try not to regret but be brave. That's what she would want you to do.


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## organicpapayamama (Dec 5, 2008)

thanks again for your comments. I was thinking about this all weekend. Not with regret or anything... just trying to see if I would have made the same decision had I had all the info. I think thats what bothers me... I like to make informed decisions about everything but especially when it comes to my children and health. With what I was given at the time I know we made the right choice. Had we known that there was a slight possibility that she would have lived say to at least a yr or more like this child.... I dont think that I would have made a different decision. She would be alive in the sense that her heart would be beating... Im not sure if it would be on her own like the boy in the story or on machines but nothing else would be there. She wouldnt be able to hear or see or move or communicate or anything on any level. what kind of life is that? I think if I wanted to keep her alive like that it would have been selfish on my part... not that the mom in this video was selfish but thats my opinion for me if I had done it. at any rate.... I feel more at peace about it. thanks.


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## ladyjools (May 25, 2009)

if it helps
i would have made the exact same desision and i almost did,
i had an ultrasound which confirmed that Samson was not going to be able to survive outside the womb, (no amniotic fluid) at 16 weeks,

i was already in early stages of labour and went on to birth him a day later but i would have been induced had my body not already started the process,

its a horrible deision to make no matter what

Jools


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## organicpapayamama (Dec 5, 2008)

I dont know why I am suddenly getting more info now and Anencephaly especially now but I just got the last piece of the puzzle today and from the last place I ever thought I would get it. I cant believe that Brittany Murphys death and TMZ gave me the last clue I needed. One of the meds that was found at Brittanys home was Topamax. This was instantly a familiar name to me but I couldnt quite remember how... I read on that it was a medication given for migraines. BINGO. That was it. I got it from my dr years ago for my migraines although I didnt take it long as I didnt like the side effects of having my hands go numb. Well as I read further Topamax is also an anti-seizure medication. There is the link. Anti-seizure medications have been linked to many NTD including Anencephaly. I had no idea it was an anti-seizure med nor that the risk of NTD was so high with it. This was never told to me and I never read it on the prescription itself. what a shock. I was not ttc nor was I pregnant while I was taking it. I took it almost a year before I got pregnant. If I had to guess Id say 9-12 months before I got pregnant. I think even then it was too soon to ttc. Although I cant say 100% that was the cause I am about 99% sure it was. wow... I finally have my answers....if I had only known.... at least I have some closure.


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## CherryBomb (Feb 13, 2005)

Quote:


Originally Posted by *Megan73* 
I'm so sorry you're feeling this way, mama








I'm frustrated by people who say they'd NEVER end a pregnancy. It's easy to say that when you haven't been there.

That is unbelievably presumptuous. How, exactly, do you know people who say that HAVEN'T been there?

Because I HAVE been told that my newborn on life support might be in a permanent vegetative state her whole life. I HAVE been there. And my commitment to life, *no matter what*, is still unwavering. _That doesn't mean I judge or question the love of parents who chose otherwise._ But _I_ will *never* end a pregnancy or remove basic life support, *period*.


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## Megan73 (May 16, 2007)

Great - you're not a hypocrite. But I say that because clearly lots of people who say they're "pro-life" ARE terminating pregnancies because of pre-natal diagnoses. According to this link (http://www.ncbi.nlm.nih.gov/pubmed/10521836) more than nine in 10 pregnancies in which Down Syndrome is diagnosed end in termination. And DS is NOT in most cases fatal - although it's true babies with Downs are more likely to be miscarried or stillborn.

And OP, I googled the drug you took for migraines and found that most of the affected babies had cleft palates - not NT problems. Also, I think it's really unlikely that a drug you didn't even take during pregnancy could have affected your baby. Please don't blame yourself - I know how easy it is to think that somehow you should have been able to save your baby


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## organicpapayamama (Dec 5, 2008)

Quote:


Originally Posted by *Megan73* 
And OP, I googled the drug you took for migraines and found that most of the affected babies had cleft palates - not NT problems. Also, I think it's really unlikely that a drug you didn't even take during pregnancy could have affected your baby. Please don't blame yourself - I know how easy it is to think that somehow you should have been able to save your baby









the link is with anti-seizure meds in general... not just the one I took. I know this for a fact as I have been participating in a research/ study. Here is more info on what they have gathered and how to participate:

http://www.chg.duke.edu/diseases/ntd.html#anchor2


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## annekh23 (Nov 1, 2008)

Quote:


Originally Posted by *CherryBomb* 
That is unbelievably presumptuous. How, exactly, do you know people who say that HAVEN'T been there?

Because I HAVE been told that my newborn on life support might be in a permanent vegetative state her whole life. I HAVE been there. And my commitment to life, *no matter what*, is still unwavering. _That doesn't mean I judge or question the love of parents who chose otherwise._ But _I_ will *never* end a pregnancy or remove basic life support, *period*.

We all go through our own journeys, I used to say I'd never end a pregnancy, then I had a horrific late pregnancy and delivery experience and for a long time I changed my mind and said I would terminate a pregnancy because term with a healthy baby wasn't even considered safe for me, so term with an unhealthy baby seemed foolish. But, when it came to the crunch, an unexpected pregnancy after we'd decided those risks weren't worth taking, I didn't stick with my plan of testing for everything and thus the possibility of terminating if something incompatible with life was found, I refused all prenatal testing, choosing to carry the baby as close to term as was safe regardless, because we wouldn't know and ultimately I felt I couldn't trust myself with the information because deep down, my never end a pregnancy belief still stood. We were blessed with a healthy girl, born in week 36, so I haven't been there, in terms of knowing of a likely fatal diagnosis but carrying to term, but I have stuck with my belief by not even allowing that to be found out. Obviously sometimes the events that happen within pregnancy force you to find out, and in one pregnancy that did for us mean we did testing we wouldn't otherwise have done, but I do feel likely I've actively stood by my beliefs, not just preached about them, even if I haven't actually carried a baby with a fatal diagnosis to term or their death in utero.


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## Crunchy Frog (Aug 24, 2008)

Just wanted to let you know how sorry I am for your loss, but also to let you know that there was absolutely no possibility that the neural tube would have closed after 21 weeks. Neural tube closure at the head end happens between 23 and 26 _days_ of embryonic development. There is nothing that could have happened at any later stage that could have changed the course of events.

I hope you can find some peace with this eventually.


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## philomom (Sep 12, 2004)

Quote:


Originally Posted by *columbusmomma* 
You made the best decision for the baby and your family when this occurred, therefore you did make the RIGHT decision for your family.

Yes, that is what I would have written.

Hugs to the OP.


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