Re: To Amnio or Not?

[Guest guest]

Hi Toi, I just told my doc today that I WILL NOT have an amnio done, I am 41.

Thee are too many risks and there is really no benefit from it. If the baby

has any defects when it is born we will find out them. Abortion is not an issue

here, I would not do it and I think that is kinda like one of the main

reasons to have the amnio and that is that if something is wrong the couple has

a

chance to terminate the pregnany. I know they say it is so you can prepare for a

sick child if that is the case but why stress the pregnancy if something were

wrong and you were not terminating. I am going to love this child regardless

so I am NOT having it done. I have read too many horror stories too and the

lady next door had a one pound baby after getting an infection right after an

amnio, the baby lived and is 4 years old today but most have many complications

at 29 weeks. The decision is only yours and hubbys to make though, Do not let

any docs pressure you into anything. this is YOUR BABY and YOUR BODY. good

Luck on your choice

HUGS, ROBIN, NY

Age- 41

Due Date- #4 July 27th, 2004

OPEN RNY

10-18-02

378/246/170???

DR.EDWARD HIXSON

SARANAC LAKE, NY

Mom to:

&

7 1/2 year twin boys and

Madison age 5

Miscarraige August 2001

Miscarraige August 2003

Married to Pup:

15 years

[Guest guest]

Toi,

I hope that I am not out of line in relaying my thoughts... but believe

me, I have done a LOT of thinking on this subject, and since you asked....

here goes...

I am 39 and expecting my first. I didn't know that much about amnio or

the other blood tests that are offered (chorionic test, etc..). I spoke with

my doctor for a very long time. She said that if I were to decide on amnio,

that I should consider a few things. First, only do it if you are prepared to

make a decision about terminating the pregnancy. Second, be aware that the

test is not fool-proof... there are MANY false positive tests. Third, be aware

of the risk of the test itself.

I asked my doctor (a female in her 40's with 3 children of her own) if she

would have the test. She said that she DID have the test with her last 2

children because of her age at the time of their births. She said that

thankfully the test came back fine both times. However, since that time she had

a very

dear friend who gave birth to a little girl with Down's Syndrome. She said

that this little girl is just an angel and that after seeing her and loving

her, there is no way that she would have the amnio if she were to get pregnant

again. I definitely appreciated her honesty.

I decided NOT to have the test and we even decided NOT to have the

chorionic blood test or the test that tests for the 3 things (my mind is a BLANK

right now!). The problem is that all of these tests have a very high false

positive rate. As much as 25% in some cases. And they also don't tell you any

levels of severity. For instance, if you test positive for a baby with Down's

syndrome, that test won't tell you if the baby is going to have a very mild case

or a very profound case. That just isn't good enough for me, not when you

figure in the risk of the test itself.

I have also researched the ultrasound test and found that most of the

things that they test for with the amnio and these other blood tests are often

spotted on an ultrasound. Hydrocephaly and spina bifida can be seen in many

ultrasounds and IF that were to happen, then further testing and possible

surgery

to correct those defects could be obtained. I just feel much safer with that

option. And, heaven forbid, if my baby is seen in an ultrasound with a

severe birth defect such as a brain stem with no brain attached, then I would be

forced to make the hardest decision of my life, with or without having done the

amnio.

I also have a client who recently had a beautiful baby boy. He is

perfectly healthy, but her first child, born 10 years ago, was not. She had a

baby

girl and the child had substantial, multiple birth defects. The child lived

for 6 years needing constant care and attention. The mother has told me many

times that she would never have given those 6 precious years up for anything.

She had testing at the time (she was very young but had some " female " issues

that lead to amnio and other tests) and ALL of her tests came back negative!

There was absolutely no indication that this child was going to be born so

severely debilitated. I realize that's probably not common, but it was another

reason why I decided not to put a lot of trust into the amniocentesis.

I hope that I haven't scared you or offended you. These are just my

thoughts after a very long and soul-searching process of decision making.

Good luck to you, and keep thinking about how many women over 35 have had

healthy, happy babies! That's what keeps me going )

Dee

[Guest guest]

Toi,

I hope that I am not out of line in relaying my thoughts... but believe

me, I have done a LOT of thinking on this subject, and since you asked....

here goes...

I am 39 and expecting my first. I didn't know that much about amnio or

the other blood tests that are offered (chorionic test, etc..). I spoke with

my doctor for a very long time. She said that if I were to decide on amnio,

that I should consider a few things. First, only do it if you are prepared to

make a decision about terminating the pregnancy. Second, be aware that the

test is not fool-proof... there are MANY false positive tests. Third, be aware

of the risk of the test itself.

I asked my doctor (a female in her 40's with 3 children of her own) if she

would have the test. She said that she DID have the test with her last 2

children because of her age at the time of their births. She said that

thankfully the test came back fine both times. However, since that time she had

a very

dear friend who gave birth to a little girl with Down's Syndrome. She said

that this little girl is just an angel and that after seeing her and loving

her, there is no way that she would have the amnio if she were to get pregnant

again. I definitely appreciated her honesty.

I decided NOT to have the test and we even decided NOT to have the

chorionic blood test or the test that tests for the 3 things (my mind is a BLANK

right now!). The problem is that all of these tests have a very high false

positive rate. As much as 25% in some cases. And they also don't tell you any

levels of severity. For instance, if you test positive for a baby with Down's

syndrome, that test won't tell you if the baby is going to have a very mild case

or a very profound case. That just isn't good enough for me, not when you

figure in the risk of the test itself.

I have also researched the ultrasound test and found that most of the

things that they test for with the amnio and these other blood tests are often

spotted on an ultrasound. Hydrocephaly and spina bifida can be seen in many

ultrasounds and IF that were to happen, then further testing and possible

surgery

to correct those defects could be obtained. I just feel much safer with that

option. And, heaven forbid, if my baby is seen in an ultrasound with a

severe birth defect such as a brain stem with no brain attached, then I would be

forced to make the hardest decision of my life, with or without having done the

amnio.

I also have a client who recently had a beautiful baby boy. He is

perfectly healthy, but her first child, born 10 years ago, was not. She had a

baby

girl and the child had substantial, multiple birth defects. The child lived

for 6 years needing constant care and attention. The mother has told me many

times that she would never have given those 6 precious years up for anything.

She had testing at the time (she was very young but had some " female " issues

that lead to amnio and other tests) and ALL of her tests came back negative!

There was absolutely no indication that this child was going to be born so

severely debilitated. I realize that's probably not common, but it was another

reason why I decided not to put a lot of trust into the amniocentesis.

I hope that I haven't scared you or offended you. These are just my

thoughts after a very long and soul-searching process of decision making.

Good luck to you, and keep thinking about how many women over 35 have had

healthy, happy babies! That's what keeps me going )

Dee

[Guest guest]

Toi,

It appears to me that you have answered your own question when you

wrote " This pregnancy is long awaited and soooo wanted, that the fear

of doing anything that might harm it in any way "

I didn't choose the early amnio for this exact same reason. My OB

said the risk of miscarriage was low, but one in 200 seems terribly

high if you happen to be the *one*

Best wishes in everything you decide!

For us, we knew we wouldn't terminate and that the good Lord would

see us through whatever he brought us to!

:)Sheila

[Guest guest]

Hello Toi, I had a low triple screen with my first pregnancy and the

perinatologist did an amnio in a kind of emergency situation. I was fine and

the baby perfect. This pregnancy I am 37 and the doctor offered because that

is the medical standard. I was torn. I told him I would never terminate a

pregnancy, however I would like to be prepared for a child with special needs.

I had the amnio a week ago and am waiting for the results. It was a little

painful, cramping more than anything, the baby did great and nothing went wrong.

It is a very personal choice, if there is something wrong with the baby your

life will change at delivery, the question is do you want to know sooner or

later. Keep praying, let God be your guide.

Best of Luck

Terri

To Amnio or Not?

So we're 12 weeks along and because of my age (36) our OBGyn has

suggested we think about having an ammiosentesis (sp?) done. Doc

says he usually waits until around 16 weeks since risks are lower at

that point and because he doesn't perform the test to give parents

the option to terminate, but to give them information and preparation

time.

I've read all sorts of material on the test and know how and why it

is performed, but that doesn't settle things in my mind and heart.

I've heard of people that have not had any problems after the test

and a recent horror story where the sack was torn and the couple were

basically told to " write this one off. " Its those kinds of things

that scare the bediddle out of me. This pregnancy is long awaited

and soooo wanted, that the fear of doing anything that might harm it

in any way... you know how it is.

So my question is, from you seasoned post wls moms and you mommies to

be... what were your choices regarding amniosentisis and how did you

deal with making the decision to have or not have one? We're praying

on it, but need some well seasoned guidance.

Thanks,

Toi

Children are a blessing, and a gift from the Lord. -Psalm 127:3

[Guest guest]

I guess it somewhat bothers me that many people assume that because

one opts for an amnio or other genetic test its because one wants the

option to terminate if everything isn't " perfect. " I believe the

MAJORITY of people that have them done want to be prepared. I know

with hubby and I that is our one and only purpose for consenting to

an amnio, if we decide to do so.

The end result will be the same, amnio or not, this child will be

cherished, no mater what the results of the test determine, but we

are a working family and feel it would benefit us (logical side

thinking here) to be able to prepare in any way necessary to properly

take care of a child that may have special needs immediately upon

coming home from the hospital, instead of having to make hasty and

possibly poor decisions because we didn't take the time to prepare

for special needs the best we could.

Now that is our logical way of thinking; however, its the emotional

side that is giving us such difficulty and quite often strong arms

the logical side out of the way. I really appreciate everyones advise

and suggestions, and although it was my OBGyn that suggested we THINK

and learn about the amnio he is very respectful of our desires and

WILL NOT terminate a pregnancy for any reason (this is one of the

reasons we were so pleased to find him), that is why he chooses to

wait until later weeks to perform the test, he doesn't offer them for

reasons of termination, but for knowledge.

I guess when it comes down to it what we really need to do is rely on

answers to our prayers and the good advise of those that have been

there.

Thanks bunches,

Toi

[Guest guest]

Toi,

I just went to a 2 hour class at the hospital yesterday on making the choice to

have the AFP, the serum test or an amnio. This dr. that did the class is a doc.

that only deals in high risk pregnancies and complicated pregnancies at our

hospital. What I got out of the class is that you need to think of what you

will do if the outcome is within certain ranges. He said he CANNOT tell us for

100% that the child will have cystic fibroisis or downs etc. He can only give

us the statistics or indicators. He said the main thing is that what are you

going to do about the information you get from the test. By the time they test

for this, there is nothing they can do about abortion because they are not

allowed to. We would hve to go to the Netherlands if we chose to have an

abortion.

If I were you I would have an in depth ultrasound FIRST and do the blood work to

see what the indicators show. If there are indicators then do the ultrasound

because it can show if the baby has downs or not. There is something on the

brain, sorry can't remember the technical name for it, that shows the baby has a

high chance of downs. If all of that shows high indications, then and only then

would I have the amnio. And then you need to think of the consequences. What

are you going to do with the information you have. That's what he kept

stressing to us over and over. I am 35 and I know what you're going through. I

chose to go ahead and have all the blood work anyway. My husband and I will

talk about whatever the results are and go from there.

To do an amnio without doing the bloodwork seems very irresponsible. He needs

to show you what the indicators are that would make the risk of amnio worth it.

Not just because of your age. Although you are in a high risk age group I

learned yesterday the majority of downs babies are born to mothers between the

ages of 20 and 30 because they are the group that has the most babies. Ask him

to do the ultrasound first. If he doesn't know what to look for go to a dr.

that deals with complicated pregnancies and get him to do it.

Whatever you choose to do, discuss it in detail with your hubby and make the

decision that is best for you. One that you can live with.

Hope this helps.

[Guest guest]

Toi,

I agree with what you're saying. I know that it seems like it comes down

to a clear cut choice over whether you would terminate a pregnancy or not, but

for me that wasn't even the most basic part. Someone else on this list said

that the extra stress from knowing that your baby had a handicap would be very

difficult to handle and also that there is no real way to prepare for

something like that, and those words hit home for me. I don't think there is

ANY

possible way that my husband and I could prepare physically or financially and

especially emotionally for a child with multiple disabilities. We would

certainly try, but neither one of us has had experience in these matters (first

child

for us both) and I just know that we would be learning as we go along no

matter what the final outcome. So for us the decision about amnio came down to

deciding whether we wanted to have those months to prepare IF something was

wrong. We both decided no (and believe me, we are aware that we may still have

that option if something is discovered in the other blood tests or through

ultrasound). I kept trying to imagine what I would do if I knew that my baby,

inside of me, was developing with something horribly wrong. I would obviously

be

heartsick. Would I be able to work? Doubtful... my job requires me to be p

retty focused on others. Would I be able to talk about it with others?

Doubtful... I know that I would be too emotional to share that information with

people. Would I feel guilt? Probably... even though the " common sense " side of

me would tell me that it wasn't my fault, I would still suffer from it. Would

I enjoy any part of my pregnancy? No... I know that at that point the focus

would be on the negative and not the positive... as much as I would try

otherwise. So it all came down to MY weaknesses on the issue. I just realized

that as strong as I like to believe that I am, I am probably not strong enough

to

deal with that at this time. So... maybe I'm a " pollyanna " but that's OK

with me for the next 4 months. It helps me to relax when I think of a perfect

little baby growing inside of me. I love this child... no matter what. And

besides, I can be a real fatalistic thinker sometimes and I always think that if

the chances are " 1 in 100 " that I would be the " 1 " . Of course that only

applies to bad things... not good things like winning the lottery!!

I can't agree with you more that there are just so many decisions once

you get older! What is that saying??? Growing old is NOT for wimps!!!! )

I wish you the very, very best in your decision making. Whatever you

decide will be right for you and it sounds like your doctor is terrific.

Dee

[Guest guest]

Hi Toi,

I totally disagree that the only reason to have a AFP or an amnio is

if you would abort because of less-than-perfect results. I think

that all information is valuable. My AFP was fine, so I didn't need

to make a decision regarding an amnio, but if my results *hadn't*

been fine and if a level 2 u/s showed indications of problems, here's

why I probably would have had it done:

- Some birth defects (spina bifida, in some instances) can have

surgical treatment to improve the outcome for the child.

- Some birth defects our local hospital just is NOT equipped to deal

with. At all. For the safest delivery/ideal treatment immediately

after birth, we would need to travel to a hospital 3 hrs away. I

would also change OBs to one with more experience with high-risk

pregnancies/deliveries.

- We have two young children at home. I would want to be able to

prepare them if their younger sibling would have severe challenges or

a birth defect not compatible with life.

- I myself would want time to emotionally prepare. I would want to

be in the best state of mind to meet my new baby--I just wouldn't

want to be surprised by horrible news in the delivery room if I could

help it.

Now having said ALL that, this baby is very much wanted and will be

much welcomed. It would have been so hard for me to put this baby at

risk in any way. Parenting is full of hard decisions though, so I

would probably take into account my AFP results, the advice of a

genetic counselor, and the results of a level 2 u/s to try to make a

decision for the greater good. I'm not sure if any of these things

would affect your personal situation, I just thought I'd give you

food for thought. Best of luck to you.

Laurie

mama to Avery (7/98), Noah (7/00), & expecting Cole (5/27ish)

[Guest guest]

I am 39 years old, 32 weeks pregnant with my first child, and I

chose to have the amnio. They did it at about 18 weeks. It only

hurt a little bit, waiting for the results was a little stressful,

but nothing I couldn't handle. I felt better knowing that I would

be informed of any potential problems. It is a personal decision,

and I wish you the best.

Kari Hanson

RNY 1-8-03

Aerin Hanson

EDD 3/26/04

> So we're 12 weeks along and because of my age (36) our OBGyn has

> suggested we think about having an ammiosentesis (sp?) done. Doc

> says he usually waits until around 16 weeks since risks are lower

at

> that point and because he doesn't perform the test to give parents

> the option to terminate, but to give them information and

preparation

> time.

>

> I've read all sorts of material on the test and know how and why

it

> is performed, but that doesn't settle things in my mind and

heart.

> I've heard of people that have not had any problems after the test

> and a recent horror story where the sack was torn and the couple

were

> basically told to " write this one off. " Its those kinds of things

> that scare the bediddle out of me. This pregnancy is long awaited

> and soooo wanted, that the fear of doing anything that might harm

it

> in any way... you know how it is.

>

> So my question is, from you seasoned post wls moms and you mommies

to

> be... what were your choices regarding amniosentisis and how did

you

> deal with making the decision to have or not have one? We're

praying

> on it, but need some well seasoned guidance.

>

> Thanks,

> Toi

[Guest guest]

Toi,

I am almost 14 weeks along and I asked my OB about the amnio and he said the

chance of miscaarriage is higher having then the chance of anything being wrong.

He told me that there are blood tests that can do just as well with determining

anything so we are not going to do it. The only reason I was considering having

it, is because my niece has downs syndrome and my sister was only 28 at the time

so I was concerned. Best wishes.

DE

EDD#2 8/2/04

" Toi " toibox_success@...> wrote: