real help...life altering decision

[Mags 112]

wow. Only you can decide what's best for you. All I can do is tell you what I THINK I would do in that situation (cause nobody knows what they would do until they face it themselves).

If it were me, I think I would do the amnio and then go ahead with the pregnancy, reading up and making plans of how to make life easy and productive for this child.

You're always in my prayers and if you need to talk , I'm always here for you.

<<<Hugs>>>,

Ayesha

I am at a toss up of saying no to the amnio and refusing to go to genetic counseling....and getting the amnio and going foward no matter what...I actually am scared of the amnio because my body is so prone to infection from all these steroids from the asthma...Im so pissed at my husband because he putting of the ticket till the end of april beginning of may and even scheduling a vacation with his mom and im just tired of being alone with all this stuff....this is the kind of situation you reallyneed familys help on and i just dont have a normal one to consult with..sorry to bring this ####### to you...im so sorry

I used to work in genetics back in the UK, amniocentesis/chorionic villus sampling was exactly what I used to culture and analyse.

What our genetic counsellors always used to say was this:

Would you terminate if the child was affected?

Will you be stressed throughout the pregnancy by not knowing?

If you would not terminate and would keep the child, after having the AF, would this time help you to prepare for the birth and any complications?

Answer these questions honestly and you will have a pretty good idea of what to do.

Wahrania you said the blood test indicated a Down's risk but what did the ultrasound show? I had all that done last year when I was pregnant with my daughter because I am over 35, and I was told that the ultrasound measurements were a bigger indicator than the blood test....

i had the transnuchal but not a detailed older baby one...the neck was ok...the blood is bad

What was the nuchal measurement? Can you remember?

Did you have an AFP blood test done? These are not very efficient and are rarely done in the UK now because of false positives and the UK is actually the world governing body of all fetal medicine.

Did you have a detailed ultrasound? Many times this will show up abnormalities associated with Down Syndrome (heart problems etc).

What is your gestation?

If I can help you, I will.

[Beauty for Ashes 257]

I like a lot of the advice here. I'd have a second blood test from another doctor. Always get a second opinion. Then if that came back the same I'd do the amino. For me having the knowledge is empowering. With knowledge you can gain clarity in your feelings and perspective on things if you're having any confusion.

As for the Husband visiting his Mom I hope it's a quick trip but I really want to say "What is his number I want to chew his ear off for causing you any stress and worry and not making you happy right now."

hes calling me alot so i know he cares....its just a long trip and hard to go back and forth...he hasnt seen her in 5 years..i know he will be better for it...im just so quiet right now just thinking..my brain cells are gone

[Beauty for Ashes 257]

wow. Only you can decide what's best for you. All I can do is tell you what I THINK I would do in that situation (cause nobody knows what they would do until they face it themselves).

If it were me, I think I would do the amnio and then go ahead with the pregnancy, reading up and making plans of how to make life easy and productive for this child.

You're always in my prayers and if you need to talk , I'm always here for you.

<<<Hugs>>>,

Ayesha

I am at a toss up of saying no to the amnio and refusing to go to genetic counseling....and getting the amnio and going foward no matter what...I actually am scared of the amnio because my body is so prone to infection from all these steroids from the asthma...Im so pissed at my husband because he putting of the ticket till the end of april beginning of may and even scheduling a vacation with his mom and im just tired of being alone with all this stuff....this is the kind of situation you reallyneed familys help on and i just dont have a normal one to consult with..sorry to bring this ####### to you...im so sorry

I used to work in genetics back in the UK, amniocentesis/chorionic villus sampling was exactly what I used to culture and analyse.

What our genetic counsellors always used to say was this:

Would you terminate if the child was affected?

Will you be stressed throughout the pregnancy by not knowing?

If you would not terminate and would keep the child, after having the AF, would this time help you to prepare for the birth and any complications?

Answer these questions honestly and you will have a pretty good idea of what to do.

Wahrania you said the blood test indicated a Down's risk but what did the ultrasound show? I had all that done last year when I was pregnant with my daughter because I am over 35, and I was told that the ultrasound measurements were a bigger indicator than the blood test....

i had the transnuchal but not a detailed older baby one...the neck was ok...the blood is bad

What was the nuchal measurement? Can you remember?

Did you have an AFP blood test done? These are not very efficient and are rarely done in the UK now because of false positives and the UK is actually the world governing body of all fetal medicine.

Did you have a detailed ultrasound? Many times this will show up abnormalities associated with Down Syndrome (heart problems etc).

What is your gestation?

If I can help you, I will.

i had the transnuchal..it was in range

no i havent had the detailed ultrasound...i dont even know the sex or anything...i had the newest blood work..its showing elevated hcg..the test i had is the uk test..the combo transnuchal with blood levels 4 weeks later..

[Alex+R 0]

Like others have said, it comes down to how much worrying you're going to do between now and then if you don't have the amnio. The risks for amnios are pretty low, right, Mags? Isn't it like 1/100?

I think (but I don't know since I'm not in your shoes) that if I knew I'd keep a baby with Downs, I'd want to know ASAP if he or she would be born with Downs so I could prepare before all the chaos of having a newborn took over.

PS Apparently (so I hear) there isn't a lot of suffering with Downs? Those children are actually pretty happy people, and delightful to have in the family?

[Aymerlu 3]

Wahrania you said the blood test indicated a Down's risk but what did the ultrasound show? I had all that done last year when I was pregnant with my daughter because I am over 35, and I was told that the ultrasound measurements were a bigger indicator than the blood test....

This is exactly the reason I had my tests done 2, 3, and 4 times. Our ultrasound measurements are what made us finally decide ok, there really was a problem.

[nin 1]

Apparently (so I hear) there isn't a lot of suffering with Downs? Those children are actually pretty happy people, and delightful to have in the family?

My SIL has Downs and is lucky enough to not have any heart problem that can go hand in hand with the extra chromosome. She does have problems with her thyroid and has got some extra weight on her, she's slightly OCD (but who isn't ) and while she still needs some help structuring things up, like with shopping and planning, at 22 she's finished school, has a job and she can pretty much live her life the way she wants to. Which in her case consists of swimming, horseback riding, playing basketball, watching a lot of movies, talking about her boyfriend and having a thing for Backstreet Boys

I wouldn't consider her quality of life sub anything.

[kerewin21 2]

Wahrania, I think part of what you're losing sight of (and understandably so) is that "several percent chance of downs" also means 90-something percent chance the baby is totally fine. The vast majority of these are what we call "false positives", meaning the test comes back positive but in reality there is nothing wrong. Amnio is not a very high-risk procedure but it is invasive and is not without risk. You have to decide if a positive test would change things for you.

I can't imagine what this must feel like, my thoughts are with you.

[Donna A 4]

a little off topic here..but im not so sure blood tests are completly good. my husband told me i need to get my thryoid checked because i was always cold, gaining weight rapidly, dry skin so i asked the gyno if she could order the blood test for me since i didnt have a general practisioner. so she did they came back ok. about a month later i decided it was time to get a doctor so of course they order blood tests first thing. this time it said i had a slight problem so he gave me a low dose of pills for it. that doctor kept me coming back every month...never checking the thryroid at all...im sure sucking money from me. but i had to go back monthly for the script for the pills. after a few months of feeling hammered for nothing i changed doctors. she ordered blood test and they were negative again.

then my husband always has to get blood tests for work and they told him he didnt have a mmr shot and we know he did cuz we got it for the adjustment of status. they retested him again cuz he showed them the note from the health dept. that gave him the shot....again negative.

so to me blood tests are pretty worthless. im not saying completely worthless cuz they do detect things too.

anyway...back to topic. i wish u a healthy baby and whatever u decide is the right decision for u and ur family.

[GabiandVi 34]

I can only tell you what I did, but my situation was different from yours. My pregnancy was completely unexpected. My husband and I had begun talking about adoption. I was getting to an age where it is very risky to become pregnant. So when I did get pregnant, I firmly believed it was my last chance.

My nuchal translucency was fine, but it was done on a very old ultrasound machine in a small clinic in China. The doctor, who was Swiss, advised me to have the amnio, but in China they cannot be performed until the 19th week and she didn't sound very confident that they would do it well. I could have flown to Hong Kong to have it done where the procedure and care would have been as good as back home, but my husband was also out of country at the time and not scheduled to return for 2 months after the amnio would have been done. Neither of us would have decided to abort the baby regardless of what the results showed.

Due to my age, my chances of having a baby with downs were about 4%. The chances of miscarrying after an amnio are about 2.5%. I didn't want to take that chance. Throughout my pregnancy, I would sometimes worry that there might be something wrong. I had other complications later in the pregnancy and I had moments of real fear. The week before I went into labor, I really began to think that she would be a downs baby, and I was ashamed of my feelings about that.

She was perfectly normal, only a little large, and she has developed right on schedule. If anything, she is a little on the advanced side, though I am sure she will be an average student.

This is a very difficult decision for you. I hope you find peace with whatever you decide. If you decide not to have the amnio, perhaps you can just assume that your baby will have downs, and if he or she doesn't, you can be happy about that at birth. I do wonder just now about the timeline you gave. If they have done the nuchal test after 14 weeks gestational the results are meaningless. I can't read your entry just now, but I do remember that you said you would be at 20 weeks and so I'm beginning to wonder about how far along you are now.

I wish you luck and I hope that you do not worry too much. It is not good for the baby.

[Mags 112]

Wahrania ~ It does sound to me that you had the Quad test.

Honestly? I think you should go to the genetic counsellor. They won't force you into a decision but help guide you to the one that is best for you and the baby. It's their job, they excel at it, for the most part. They can answer all of your questions - far better than the answers you'll get on a forum. The people here are wonderful at supporting you, but for actual answers you'll need proper medical opinion.

Like others have said, it comes down to how much worrying you're going to do between now and then if you don't have the amnio. The risks for amnios are pretty low, right, Mags? Isn't it like 1/100?

I think (but I don't know since I'm not in your shoes) that if I knew I'd keep a baby with Downs, I'd want to know ASAP if he or she would be born with Downs so I could prepare before all the chaos of having a newborn took over.

PS Apparently (so I hear) there isn't a lot of suffering with Downs? Those children are actually pretty happy people, and delightful to have in the family?

Amnios have a risk of 1/100 at worst. The majority of times that there is a miscarriage is where the pregnancy may have miscarried anyway. As long as you rest afterwards and keep your feet up you should be all right.

Down Syndrome children are actually very happy children and you can get it in differing degrees of severity. Average IQ can actually be as high as 92 (average human is 99) depending on the intelligence of the parents. If both parents have an IQ of 145 (or similar) then their child will, more than likely, be at the higher end of the spectrum.

There are also differing degrees of associated risks with DS. Heart problems are common, many DS children will need heart surgery after birth. Protruding tongue is also another issue, causing speech impediments. Surgery can also help correct this.

Demeanor is good as a rule, although frustration often shows as anger and DS children are stronger than the average human. DS children are very loving and affectionate. The milestones are later than with a normal child. Walking tends to be around 2 years old, for example.

People often shy away from the thought of having a child with DS, but they really are very special people.

I do wonder just now about the timeline you gave. If they have done the nuchal test after 14 weeks gestational the results are meaningless.

Nuchal tests cannot be done after 14 weeks because the nuchal fold starts to close up after this gestational date.

[sereia 0]

I don't see the problem in letting him stop in Paris on the way here if he hasn't seen his mama in such a long time. Glad you're thinking straight on that one!

And I wish you the best with your baby!

[one...two...tree 2,762]

Like others have said, it comes down to how much worrying you're going to do between now and then if you don't have the amnio. The risks for amnios are pretty low, right, Mags? Isn't it like 1/100?

I think (but I don't know since I'm not in your shoes) that if I knew I'd keep a baby with Downs, I'd want to know ASAP if he or she would be born with Downs so I could prepare before all the chaos of having a newborn took over.

PS Apparently (so I hear) there isn't a lot of suffering with Downs? Those children are actually pretty happy people, and delightful to have in the family?

Well said. To the OP, I wish you peace in whatever decision you make.

[SaadBell 0]

I can’t tell you I know how you feel; no one knows how you feel. But I can tell you I may have not faced that in my life time I have had to make some major decisions, and been alone and felt helpless. I find what we fear most is the “un-known,” start hitting web sites on Downs, talk to other parents who have had to make some tough decisions. What I am trying to say, start to study this, the more you know what you are facing and the choices you have, and there are more than termination, I think you will feel a little more in control. In situations like this, our control is taken from us, we are left with nothing, so we need to work and get back as much control as you can get. Knowledge is power, don’t make a hasty decision, if it gets too much, rent a movie, and forget about it for a good couple hours. I know it is hard to not think of anything but the problem when you are in crisis, so when I feel that, I am on the net, doing research on what I can do to fix this thing, or at least understand. In the end, there may be nothing wrong with the baby, but here again, it is always the un-known. Take care of yourself, if you can rest as much as possible. When you sleep you bring your endorphins up, not as well as exercise, but when you feel like hell, you don’t want to go walking around. We are all here for you, and if you need to talk, than do that. You are never alone; we will walk this road with you.

[amal 4]

I wanted to say that I worked in a pharmacy of mostly older women. 2 of them had sisters who got pregnant when they were older than 45. They had the tests done and both came back that the babies were severely deformed and had downs syndrome. They did the amnio and also came back the same. They went to the genetic counseling and all that stuff and the docs told them that it would be better to abort than to give birth to a baby who would suffer as much as theirs would.

BOTH OF THOSE BABIES ARE ALIVE AND WELL WITH NO DEFORMITIES AND NO SIGNS OF DOWNS SYNDROME.

I'm not saying that the tests are always wrong but ... u can never go 100% on what the tests say. I also think that if u are gonna keep to term no matter what...then only you can make the choice of if u want that amnio done or not. It is different for everybody.

much luck in your decision, we love ya girl

amal

[KEK 0]

As others have said, I think you need to make a decision based on minimizing your stress (physical and mental) during the pregnancy. If you knew you would keep the baby anyways, do you think that having extra testing would help at least with your stress levels, or to help you to prepare ahead in the chance your baby did have DS? Or would you feel it would be an unnecessary risk, if you knew you wanted to keep the pregnancy no matter what?

I have a random memory of something I read in one of my nursing textbooks, probably my Pedi. one. It was about a research study of the mothers of developmentally delayed children (probably DS, but I would have to get out my books again to make sure). It showed the common phenomenon that many of the mothers felt that their children were a blessing, and they had this specific feeling of being honored or "priviliged" to have the chance to care for these children. On this note, maybe you should try to look up support groups or information online, to see from their point of view what the expeirence is like. To help you decide if you think you should keep the baby no matter what (unless you already have). I agree that knowledge is power, and also to make your decision from your heart and not only from what the dr's are telling you.

Take care,

KEKhan