PAL (pregnancy after loss) mama's - Page 26

[Charlize]

no5no5 - I am so sorry your test results are worrying you. We decided not to do testing with DD3 as well as this baby because of results we had when I was pregnant with DD2. I had a 1/12 chance of DD2 having Trisomy 13 or 18. Our chances were so high my OB told me at the time to consider immediate induction or termination of the pregnancy. Of course I said no and freaked out. My OB finally gave and sent me to Johns Hopkins for genetic testing. We spoke with a genetic counselor and then had the very lengthy ultrasound. The ultrasound showed all was clear. And the radiologist even came in after the ultrasound tech to make sure they hadn't missed anything. He told me that if the sonographer or radiologist know what to look for in advance, they can usually determine if it's an accurate result or not. I was told that day my baby absolutely did not have any abnormalities and she was born perfect. The OB I transferred to afterwards told me not to have the testing done with future pregnancies as my results may be off for whatever reason.

All of that being said, do you have other children with disabilities? If so, knowing ahead might help so that you can coordinate everyone's care. How would you feel if this baby does in fact have DS? And, would you terminate the pregnancy if baby does have DS? How would you feel if you did have an amnio and chanced miscarriage? The way I feel (and please don't take offense) is DS is not life threatening to the baby and I wouldn't terminate, no need in amnio and chancing my pregnancy. But that's just me.

I hope things get better for you.

[no5no5]

MW, I've read 99+% accuracy for amnios.  What I've read suggests that the only reason it wouldn't be accurate is if there is mosaicism, and even then I think they catch most of it.  Of course there's also the risk that they can't perform the amnio for one reason or another, but that's another issue altogether.  There are no false positives for amnios that are performed correctly, as far as I am aware.  Have you read something different?

Originally Posted by Charlize 

All of that being said, do you have other children with disabilities? If so, knowing ahead might help so that you can coordinate everyone's care. How would you feel if this baby does in fact have DS? And, would you terminate the pregnancy if baby does have DS? How would you feel if you did have an amnio and chanced miscarriage? The way I feel (and please don't take offense) is DS is not life threatening to the baby and I wouldn't terminate, no need in amnio and chancing my pregnancy. But that's just me.

I hope things get better for you.

Thank you.  I'm not at all offended.

I am very fortunate insofar as I am a SAHM, to only one DD, who, while very spirited and often very difficult, will be 5 when the baby is born and who has no medical issues to speak of.  We have amazing insurance, so whatever the baby's medical needs are they will not be a financial burden to us, at least not for the next few years while DH has his current job. 

I'm not going to lie.  I don't want the baby to have DS.  I want the baby to be totally healthy.  But no, DS is not a dealbreaker for me either.  I love this baby, and I will love it and care for it regardless. 

Of course if we had a miscarriage after the amnio (or at any time) it would be devastating.  Horribly, terribly, heartbreaking.  But the risk of that is small.  I almost want to run some numbers...

If the risk of DS is, let's say, 1/50 (I'll cut myself a break because it's a fact that vegetarians have more false positives), and the risk of miscarriage is 1/450 (the place we will have the amnio, if we do, is a world-class medical center), then:

1/22,500 chance the baby has DS but the amnio results in miscarriage.

49/22,500 chance the baby does not have DS but the amnio results in miscarriage.

449/22,500 chance the baby has DS and the amnio is fine.

22,001/22,500 chance the baby does not have DS and the amnio is fine.

If I did that right, those numbers seem pretty good, really.  Can anyone check my math?  All I know is that if I was one of the 22,001 women who got nothing but good news, it would just be such a relief.

[MarineWife]

Originally Posted by no5no5 

MW, I've read 99+% accuracy for amnios.  What I've read suggests that the only reason it wouldn't be accurate is if there is mosaicism, and even then I think they catch most of it.  Of course there's also the risk that they can't perform the amnio for one reason or another, but that's another issue altogether.  There are no false positives for amnios that are performed correctly, as far as I am aware.  Have you read something different?

I don't remember the specifics about what the inaccurate results were. I came across that info when I was searching other stuff. I wasn't really concerned with the amnio results so I just skimmed it. I just remember those stats because I was surprised. I always thought that amnio was absolute but it's not.

As far as your risk assessment, I didn't check your numbers. I'll take your word for it. I look at it in terms of inherent vs. non-inherent or unnecessary risks. There are certain inherent risks in having a baby. One of those is having a baby with a birth defect or health problem. The risks involved with having an amnio, regardless of how miniscule they may be, are not inherent to pregnancy. So for me, it doesn't matter what the actual numbers are. It's not a risk that I need to take. Only you can decide if it's worth that tiny risk to you and your family.

Here's something that discusses the accuracy and chance of false + or false negative amnio results: http://miscarriage.about.com/od/prenataltesting/f/amnioresults.htm. It does mention that false + are possible but doesn't give any stats on it.

Here's an article that discusses the risk of miscarriage from an amnio: http://miscarriage.about.com/od/pregnancyafterloss/f/amniocentesis.htm. Depending on which studies you look at, the risk could be as much as 1 in every 100 amnios or as little as 1 in every 1,600.

Here's an article that discusses the percentage of false results, positive and negative: http://www.womens-health.co.uk/downs.asp. It's from the UK so the stats might be a little different in the US.

at a cut-off rate of 1 in 250, 5.2% of women will have an unneccessary [sic] amniocentesis, and we will still miss 42% of DS cases.

(from the above article)

[Charlize]

An OB once told me too that if the baby does have an abnormality that might increase your risk of miscarriage after an amnio too. I'm not trying to talk you out of an amnio as they are very thorough and informative, but I do feel HCPs can and sometimes do leave out alot of details about different scenarios. Everything being said, general miscarriage rates with an amnio are 2%, which translates into 1 in every 50 women who do have an amnio will miscarry. Having those results can be such a relief or give you the knowledge you need beforehand. I'm just not sure about them since they do come with costs sometimes. Had DD2 shown signs of Trisomy 13 or 18 in ultrasound, I probably would've went for the amnio. I'm not sure what I would've done if the results had been positive for those as they are life threatening, but I do understand where you're coming from. It's a very hard decision.

Can you have a level II ultrasound at a NICU capable hospital or perinatologist and then decide on the amnio based on those results? The ultrasound helped us deal with what we were told. If your baby does have DS, they *should* be able to tell on ultrasound because of facial feature defects.

[no5no5]

Originally Posted by MarineWife 

I look at it in terms of inherent vs. non-inherent or unnecessary risks. There are certain inherent risks in having a baby. One of those is having a baby with a birth defect or health problem. The risks involved with having an amnio, regardless of how miniscule they may be, are not inherent to pregnancy. So for me, it doesn't matter what the actual numbers are. It's not a risk that I need to take.

Yeah, this is how I thought about it back when I was pregnant with DD, and for a few years afterward.  In the pregnancy I miscarried I had planned on not even doing ultrasounds, because I thought that they were a slight, but real, and unnecessary, risk.  It wasn't until I was sure that I was miscarrying and had been in a deep, deep depression about it for weeks, that I consented to an ultrasound (which confirmed my suspicions).  That experience really made me realize that my peace of mind is not negligible.  It's not a throwaway.  And it's not something that I can just sacrifice without a second thought.  I have to stay sane, for myself and for my family.  Of course I'd rather worry than miscarry, but it's not that simple for me anymore.

Thanks for the link, btw.  It does mention false positives.  I sort of can't imagine how that could be possible, unless there's a vanishing twin or a major malfunction at the lab, but maybe my imagination is limited. 

Originally Posted by Charlize 

An OB once told me too that if the baby does have an abnormality that might increase your risk of miscarriage after an amnio too. I'm not trying to talk you out of an amnio as they are very thorough and informative, but I do feel HCPs can and sometimes do leave out alot of details about different scenarios. Everything being said, general miscarriage rates with an amnio are 2%, which translates into 1 in every 50 women who do have an amnio will miscarry. Having those results can be such a relief or give you the knowledge you need beforehand. I'm just not sure about them since they do come with costs sometimes. Had DD2 shown signs of Trisomy 13 or 18 in ultrasound, I probably would've went for the amnio. I'm not sure what I would've done if the results had been positive for those as they are life threatening, but I do understand where you're coming from. It's a very hard decision.

Can you have a level II ultrasound at a NICU capable hospital or perinatologist and then decide on the amnio based on those results? The ultrasound helped us deal with what we were told. If your baby does have DS, they *should* be able to tell on ultrasound because of facial feature defects.

I've never heard of such high rates of miscarriage from an amnio.  The nurse told me that they've got a rate for all complications 1/400 or 1/500 (i.e., 0.0025% to 0.002%), which matches the figures I've seen in studies of experienced providers. 

Yes, we will do a level II ultrasound at our (great) hospital before we do anything else.  The thing is, ultrasounds just aren't that good at finding T-21.  Maybe they're better wrt T-13 or -18.  I know the babe doesn't have the missing nasal bone that is common among DS babies, because it had a nice big one at the NT scan.  Anyway, I think they're doing the ultrasound mostly to check for associated heart defects rather than because they expect to be able to tell me whether the baby has DS or not.  We'll see, I guess. 

[MarineWife]

I totally understand about the peace of mind thing. That's why I had so many ultrasound early on in this pregnancy. That's also why I bought my own fetal doppler.

I know other people worry more about things like DS than I do. If it's a concern for you for whatever reason, then it may be worth it to you to have an amnio. There's nothing wrong with that. I was trying to just present how I see things for me, which is what I thought you asked. I hope it didn't come across as if I were trying to tell you that you shouldn't worry about it.

[no5no5]

Ack! It won't let me edit for some reason. Disregard those extra zeros, if you will. The numbers are 0.25% to 0.2%. But actually, one of the links MW provided says that the true risk might be as low as 0.06% for an experienced provider. Also, can I just say that I truly appreciate this discussion? I can't really talk about it in depth with anyone IRL, as I've got laryngitis (yes, again). And poor DH has been working very late.

[no5no5]

Originally Posted by MarineWife 

I hope it didn't come across as if I were trying to tell you that you shouldn't worry about it.

Oh, no, not at all.  I really appreciate the discussion.  I'm just trying to process how I feel about it.

[MarineWife]

Originally Posted by no5no5 

Oh, no, not at all.  I really appreciate the discussion.  I'm just trying to process how I feel about it.

Oh, good. In the past I have offended people without meaning to because my posts can come across as crass, I guess. I have a tendency to do that IRL, too, but I really don't mean to. I'm always worried that something I post will hurt or anger someone.

I can imagine it's a hard thing to work through to make a decision. I have to say that's one of the reasons I declined the various blood tests, AFP, triple screen, etc. I didn't want to have the worry of a possible high risk result and I know I would worry about it. Ignorance is bliss for me when it comes to that sort of thing.

[Charlize]

Originally Posted by MarineWife 


 Ignorance is bliss for me when it comes to that sort of thing.

I'm the same way after DD2! With DD1 we only had an ultrasound at 5 weeks or so for dating and another at 24 weeks due to suspected placenta previa. I wasn't even going to do an anatomy scan with her, but we did do the blood tests. Everything was normal with her. With DD2, the OB I was going to in the beginning felt it was best we do more ultrasounds due to my history of miscarriage, so we went with what he said. We also did the AFP. After those results and all the drama, we decided for any future pregnancies we would only do ultrasounds. With DD3 I had very few ultrasounds. With this one, I've had more than I'd like to admit to, but it has provided me much peace of mind as the baby has looked healthy each time.

[Gabesgrrrl]

Oooh...I didn't realize I was spilling my guts to the wrong thread! I'm so sorry ladies! I'll take my concerns to my DDC.:)

Thank you all for listening though...and happy healthy journeys everyone!
 

[Mommy Kahdib]

So I just went for our 16 week ultrasound...right before my appointment I wrote this to a yahoo group I'm in...pretty much sums up the day! 

My 16 week appointment is in an hour...I can already feel my heart beating faster, I'll have to change my shirt because I'm sweaty, and I can't shake the feeling that this time last year, actually about a month from now...I would go in with Emmie and Chase in tow, completely oblivious that I was carrying a baby that wasn't alive anymore...they played "Hide and Seek" with Parker, pretended it was just hard to find him, and then the ultrasound with the very very still baby with no heartbeat.  It is hard to think that after losing the last three babies that I'm capable of making a live baby even though I'm sitting next to the two live babies that I made.  Hopefully today is uneventful...I know I don't really have any control over it and that what will be will be...but I hope this time is just easy.  Last year was hard.  

 

My BP was high, I sweat through my clinical strength deodorant, my pulse was something like 95...but they put the doppler and searched for a little bit...and there it was at 156 thumping away.  The OB (I'm in a dual practice OB/midwife practice and I love them both!!) asked if that made me feel better, and it did, a bit...so then she asked when I would really feel better and I told her I might feel a bit better after the ultrasound where they could tell me that the baby had a brain, and kidneys and all of the organs that you need to live.  So she snuck me in for an ultrasound "off the record" and she came in with me and all looked good.  Not a thorough scan, but enough to see a spine and a brain and hands and feet and a face and kidneys and a stomach and a little heart beating away.  I still don't feel 100% better, but I think that's just me finding out that life is fragile...that life can be hard....that it can throw you curve balls that you don't expect...and that really I don't have control or know what life is going to deal me.  But I do feel a little sigh of relief and I left the office with a smile on my face.  

 

Katie

[MarineWife]

Gabesgrrrrl ~ It's all right. You are welcome here if you want to be here. I think people were just mentioning where the rest of us are in case you wanted to connect with women who are closer to the stage you are in.

Katie ~ I'm so glad you had good news today and got to see as well as hear your live baby. It is hard to know when (if) we will ever be 100% confident of things anymore. My MW asked me at my 14w appointment if I was excited now. I had to think for a minute and answered honestly that I was getting there. I was feeling better, more confident, about things but I still am not 100% relaxed and excited.

[sassygirl5146]

Katie,

My BP is high before every appt. They usually have to take it again after my appointments. It's kind of a joke to the nurses now. It's nice to have some humor when I always feel like I'm walking death row. I too had my daughter and mother in law oblivious to late loss with my previous 18 week loss. We wait each time they start the US, we have one at every OB and MFM appt, to see the heartbeat. We have a doppler that has really been a blessing.

I've had the flu or whatever winter virus going around/head cold. Every twinge I think is the start of the pain I had at fifteen weeks with our previous loss. I'm so hyper sensitive to loss this week, I'm counting the days to get past certian makers, the night I think Emmy died, the day we found out, the day we delivered her. 15 weeks 5 days, 18 weeks 3 days, 18 weeks 4 days.....it's like waiting for a bomb that may or may not go off. We were fifteen weeks Friday....I felt movement a few days ago and feel this baby in the evening if I'm sitting still focusing on something else. Baby makes his/her presence known, I never felt our last baby....the grieving with the joy, excitement, fear is so disheartening.

[lmevans]

Originally Posted by sassygirl5146 

Katie,

My BP is high before every appt. They usually have to take it again after my appointments. It's kind of a joke to the nurses now. It's nice to have some humor when I always feel like I'm walking death row. I too had my daughter and mother in law oblivious to late loss with my previous 18 week loss. We wait each time they start the US, we have one at every OB and MFM appt, to see the heartbeat. We have a doppler that has really been a blessing.

I've had the flu or whatever winter virus going around/head cold. Every twinge I think is the start of the pain I had at fifteen weeks with our previous loss. I'm so hyper sensitive to loss this week, I'm counting the days to get past certian makers, the night I think Emmy died, the day we found out, the day we delivered her. 15 weeks 5 days, 18 weeks 3 days, 18 weeks 4 days.....it's like waiting for a bomb that may or may not go off. We were fifteen weeks Friday....I felt movement a few days ago and feel this baby in the evening if I'm sitting still focusing on something else. Baby makes his/her presence known, I never felt our last baby....the grieving with the joy, excitement, fear is so disheartening.

Hugs!!! 

That last paragraph sounds almost exactly like me. It's hard to explain it to people who haven't BTDT. Even my DH doesn't "get it". 

I'm starting to cry now...I totally feel you on the "waiting for a bomb that may or may not go off". I'm feeling a little better now that I'm feeling the baby move...that feels REALLY good. But, even still, I'm having anxiety and cry at the drop of a hat. I passed my due date with Finley last month, and I felt a weight off my chest. And I thought that weight would be almost gone when I passed the end of Jan, when I passed 16 weeks (that's the gestation I was when Finley was born; he died at about 13 weeks). Unfortunately, I was surprised to NOT feel better. I almost felt worse, because I then had this big feeling of feeling like a ticking time bomb. Like I made it to the point that I was furthest pregnant with Finley....now what? It can end any day!!! Like I feel panicky. I guess it feels like because I was pregnant to 16 weeks with him....I feel like that's "the end" and I'm not "allowed" to be pregnant further than that. I know, it's illogical. 

Also, on one hand, with the movement, it makes me feel like this baby is sticking around and I'll birth a living baby in July. But then on the other hand, the further I get, the bigger the baby gets, I get more scared, because I feel like the further/the bigger, the more traumatic the experience of losing the baby would be. 

:( Does this ever end? I want to be happy. And I am glad to be pregnant....but, you know. Finley was my first loss experience; this is my first PAL experience. I want my innocence back. :(

(Thanks for "listening" to that, ladies.)

[MarineWife]

My BP is always higher at my appointments, too. At the first one with my MW, it was so high she expressed concerns about pre-eclampsia. It's low when I check it at home, around 106/60. It goes up to around 120/70 at my appointments even now. That's not high but it's higher than my norm.

I was just thinking that sort of thing last night. When will I feel fully happy and excited? I don't think it will ever happen. My MW asked me at my last appointment if I was excited yet. I had to think for a minute and all I could say was I feeling better about things. I still wasn't and still am not excited like I think I should be about having a baby.

The fetal doppler I got has been a major help. I didn't think I'd use it after that first day but I've actually used it once a day almost every day. Hearing that heartbeat still in there gives me peace at least for a short while.

[javilu]

the rental doppler i ordered should arrive tomorrow.  i wish this baby would kick me harder.  i haven't felt a real, definite kick yet.  i feel vague maybe-squirms, but i want to feel some good punches.  16 weeks tomorrow.  c'mon, baby...kick me hard!  ha.

[sassygirl5146]

well ladies we had a scare last night. As we were leaving a resturant I was crippled with pain. HIp bone to ribcage on only the right side. The only comparision I can make is equivalent to Pitocin contractions, it took ahold and wouldn't ease. I couldnt sit or lay down. I almost had to be drugged just to get me out of the floorboard of our car. My DH was panicked but maintained his cool. The MW whom was on call for my doc sent me to ER straight away. I had similar pain with our last MC but ignored it, went home and found out three weeks later that she had died. Well baby is fine as of now. THey think it could be my gallbladder?? Bloodwork and US on GB looked normal but still too closely related to GB problems to rule it out. They pumped me full of Stadol (sp) which was awful. I remember refusing it in labor and will definately do so again. ughh. I feel like I've been hit by a truck. I remember them doing the US of be baby and HE, yes we found out HE is fine. My OB when I called for follow up this morning was very alarmed and wants to see me straight away. I feel like I'm on the roller coaster again. I want to be happy about finding out we are going to have a son, but seriously with the pain, it's like the end of the battle is near. Hopefully not. Will keep you ladies updated as per OB's opinion.  

[no5no5]

Wow, Sassy, how scary!  I hope everything continues to look good for your little guy.  I've heard that gallbladder pain is excruciating. 

[MarineWife]

Sassy