I had my transuchal ultrasound and my additional blood screen.The hospital called me and told me my blood came back bad and that I was at increased risk for downs...They have scheduled me for a rush amnio in 4 days and a genetic counseling session wednesday.Even if I do the amnio wed or tues it will be one week for preliminary and 2 weeks for complete which will put me at 20 weeks...finding out if the baby is downs..

Its a several percent chance my baby is downs...and the amnio is a risk too..I ask myself if I would terminate if the baby was downs ....and my heart starts screaming inside my chest..Im waiting on my husband to make up his mind about what week he wants to leave algeria(hes applying for a transit visa to visit his mom in paris on the way here...)Ill have to drive myself to the amnio and suffer through the next 2 weeks alone...

I have options

Carry whatever I have been given to term
Terminate if its a severe birth defect
Not test with the amnio and play roulette

My husband wants me to do the amnio and then keep whatever we have
Im wanting to skip the amnio altogether but then Ill worry all pregnancy

My body is really weak and im afraid the amnio would cause a miscarriage because I have no one to help me rest or take care of my small one(she jumps on my stomach and is heavy to lift
I am besides myself because all my options suck

Any advice?

nm i read it wrong.

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 would go ahead with the amnio. You want to be prepared either way. I wish you the best.

Oh gosh sweetie, I don't know what to say. I had a son born with problems 8 years ago and I can sympathize with the worry and turmoil that you and your husband are going through. I am hoping this is one of those false positive things they tell you about when they do those tests. I personally opted out to not have the blood test for those but that was just a personal decision of myself and my SO. I think you have to outweigh the risks of everything involved with the exam. Is there a friend that can come over and help with your daughter if you need it? A neighbor, just anybody? I hope Wahrania that you make whatever decision is right for you and your family. I don't think anybody can do anything but give you advice and pray for you and your family. May God bless you dear.

Tasha

Sorry to hear this, wahrania. I'm not very good with this sort of stuff, so I'll just say that I hope you're able to make the best decision for your family.

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 crap to you...im so sorry

Only you can decide. I will be praying for you to have clarity and wisdom over this situation.

as hard as it is, I say amino. Why? it will help the worry stop at least. God has a plan for you dear, it will never be flawed. Hold tight, take the amino and fine out. You already decided you will love and accept whatever the result is, God will not fail you. Find out for yourself. If you wish to wait and it gives you peace take your time. Remember God will give you the best thing, I believe you will get a good result.

Tammy

I don't see any value to having the amnio since it puts you at risk for miscarriage. The child is a blessing with or without downs.

Wahrania,
My prayers go out to you.
we are in no place to tell you what to do... The only thing that is in my head is that, at least if you get the amnio, you will know, and you will be able to better prepare for the needs of your baby, your family, and yourself, inchallah. You are strong and whatever decision you choose will be the right one. May Allah guide you.


hz

Don't be sorry for saying what you feel. We're your family too. And I'm sure you are scared as anybody in this situation would be.

Listen...think about this, if you are going ahead with the pregnancy no matter what, then don't do the amnio if it's going to do you more harm than good.

Any choice you make, I'll be here for you.

Have you stressed the seriousness to him but in reality when he comes you will be the one still taking some care of him, he wont know the ways or routines of all this

I had the genetic screening done for both my children and alhamdulilah they were fine. However I did struggle with the thought of what I would do. For me, I wanted to know what kind of quality of life would my child enjoy if it did have a problem. If it means they will be in pain, confined to a wheelchair, incapable of functioning, etc. to me it felt selfish to keep the pregnancy. People might disagree and I might get flamed for this but it's really how I honestly feel. A child is a blessing but if the child is not going to be able to live a decent quality of life then is it really a blessing for the child?

You have to do what is right for you, but it's almost important for your husband to realize the kinds of economic and physical strains a child with disabilities means, especially if you plan to move abroad at anytime in the child's life. I wish you strength and courage as you move forward.

i was gonna try to say alot of upbeat stuff to try to make u feel better but i felt it was better just to tell u what i would doif it was me..........i would not have the test if it put the baby in danger........i would instead read anything i could get my hands on just to be prepared if it turns out the test was not false..........in truth i dont think u could handle the loss of the baby right now u have been thru sooooooooooooo much...........well i wouldnt be able to if i was in ur shoes........i will pray very hard for u........i hope that it gives u some comfort knowing that so many people care about u.......and never be sorry for allowing us to share what ur going thru........we are all here for u
sara

Wahrania

Alot of people here are going to give you advice based on their personal feelings about this issue. I simply cannot even imagine being in your position and the thoughts and feelings that you are dealing with right now.

At the same time I was pregnant with my son, a friend of the family's daughter was pregnant as well. I was a few weeks ahead of her. When they had the 18-20 week ultrasound, it was discovered that the baby had Potter's Syndrome. From what I understand, the baby's kidneys never developed thus making the lungs to never develop. Even though they knew there was 0% chance of survival for this baby, she went ahead with the baby and carried him to full term. When he was born, he lived for about an hour. For a long time I felt so guilty about why was my baby healthy and hers was not. I couldn't even wrap my mind around trying to make a choice like that. But I understood that that is one of those situations that you cannot judge someone for the choice they make. Until a person is in a position like that, they can't know how difficult it is. It's almost an impossible situation.

Either choice that you make will have life-long lasting consequences and that is a heavy, heavy place to be in. YOU and ONLY you can know what is deep in your heart and what you are capable of dealing with as a result of these choices. I hate that you don't have more of a support system.

I really hope for you that you will be able to make a choice that brings you peace. Know that many of us here have you in our thoughts and prayers.

I am sorry and I hope everything is fine with your baby. My wife was 37 when she got pregnant and the Dr asked if we wanted any tests to see if our baby might have anything but we said NO. It was better just to hope for a healthy baby and now we have a wonderful healthy son. There are risks with the amnio so you have to ask yourself is it worth knowing? will you worry any less if there is a problem? Is it worth it to know there is now problem but the anmio causes a problem? What is best for the baby if your plan is to have the baby no matter what?
I have a son that is 14 and was diagnosed with type I diabetes last September so we wanted to know if our bay might be at risk. We found a study that our baby met the requirements and sent blood samples for testing. Fortunately our baby has no genes or antibodies that put him at any risk. This was nice to know and no risk to our baby. If it would have shown a risk we could have done things to help prevent or postpone the disease.
The only benefit in getting the amnio would be to decide if you want to terminate or prepare emotionally. It is a decision you and your husband have to discuss what is best for you.

All I can advise is what i did with my last pregnancy. I was 36 at the time and my first OB was all about tests, tests, test. A co -worker had a sister with Down's syndrome and she asked me what I would do if my child had it. Being a single mother at the time I knew I probably would not be able to care for a child with Down's or a lot of special needs but there are places that will accept these children and find them homes with good families.

I was lucky and I have a beautiful healthy, wild, sassy, intelligent daughter of 6 now.

Would I have done something different if she had been disabled? That was the question I had to ask myself and the answer was no, no matter what I would have carried her and given birth to her because that was what God wanted.

A child is a gift from God and God made it how he wanted it to be. It is not for me to interfere with his wishes and for reasons only he knows the child is exactly the way he wanted it.

If you feel an amnio would help you prepare or alleviate the stress then do it. But if like me, you decide to carry the child no matter what then I would say no because of the risks.

This is what I was going to say...

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 went through a similar situation when I was pregnant with my daughter. My husband was in a horrible accident and hospitalized while I was pregnant. I got very sick and ended up in the hospital for a short period of time, but while I was unconscious, they conducted a serious of "tests" including xrays, not realizing that I was pregnant. When they scheduled amnio and genetic consultation the real question for me was, what will this do for me? In other words, will I abort this baby if they find a problem? Can they do something to change the fate of the baby if they find a problem? In both cases, the answer was no. So, there was no reason for me to do the amnio. No matter what, I knew I was going to keep my child and they doctor's told me that all it would do is let them know what was the more likely possiblity. But they couldn't do anything until after birth, if anything was even necessary. I prayed and handed it over to God and just tried to "enjoy" the rest of my pregnancy. To the extent you can enjoy being swollen, nauseous, and tired all the time. But you know what I mean. I hope my situation helps you sort out your feelings about your situation.

PS I wish your husband would bring his trifling behind home ASAP! Men would really benefit if they took a more active role in the process.

When I worked in OB I saw many tests come back abmornal when there was nothing wrong at all. Patients would redo the test and it would be normal. Maybe have the blood test done again? Only you know what is right for you. A friend of mine has a Downs child that the doctors wanted her to terminate. This child is such a delight! My son is autistic. It he challenging at time? Heck yah, but I wouldn't trade him for the world.

Wishing you only the best!

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

Yes Drs are good at scaring you, my wife had the glucose tollerence test twice and was also sent to a cardiologist. Nothing ever was wrong they just want to be extra safe. I always explained to my wife about the tests and results so she would be 100% informed of why the want to test. I explained the tests concerning birth defects and she said NO to any of them because her choice would never be to abort and really that is the only reason the Drs would test for birth defects so that you could decide to abort, they were not meant to prepare you for a disabled child.

Hehehe, "triflin'" is one of my favorite words. But yeah, not to get into your husband here but I'd be way pissed if mine wanted to make a pit stop before coming home. Especially if I were in your shoes with the baby and all.

i am mad but he hasnt seen his mom in 5 years........ive made it this long alone.....he needs to see her

I had a family member who was supposed to get the test for down as it was in our family and due to her age her doctor wanted her to have the tests. She did not choose to due to the fact that she was going to have the child and keep it so in her mind it didn't matter. Having said that I believe like everyone else says you need to do what is best for you. Good luck in your decision and with the entire situation.

Dear wahrania,

I cannot even imagine all the feelings and emotions and "maybes" going through you right now. I have no wise words or advice for you. Just know that whatever you do, God will be with you; and so will I.

your friend Len.

First off: You get A LOT of false positives on the blood and that's why many doctors don't recomend it if a couple have stated that they will not terminate the pregnancy no matter what.
And second: Even with an amnio there's no guarantee that the child will be born healthy. You will find out if it has spina bifida, any of the trisomies and a few other genetical things, but there's a many other things that can be wrong. So from a "it will give me peace of mind" perspective I think it gives a false sense of security.

Pregnancy is worrying time, but also a time full of hopes and dreams.
Good wishes going your way.

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."

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.



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.

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

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..

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?

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.

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.

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.

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.

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.

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.



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.




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

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!

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

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.

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

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

wow that is really tough. I wish you all the best .. It's a tough decision. I don't know what I would do if I was you. Sorry your husband can't be there with you during this difficult time.

I've never been in any situation even remotely close to this but I do agree with the advice given. Think about what will ease your mind the best? What will help your stress ease so you do not cause more harm to yourself or the baby?

A friend of mine was pregnant and they told her that her child would have downs. It wasn't a several percentage like you, they were actually saying it was pretty up there. Even then, she gave birth to a healthy baby girl, with no downs syndrome. She is so funny, laughs all the time, and is such a happy child. She loves to talk and learns a new word everyday.

On the other side of the fence, my other friend got pregnant and her biggest fear truly was to have a child with Downs Syndrome. 9 months later she gave birth to her son who has down syndrome. He is truly the light of her life. He is funny, laughs all the time, and is such a happy child. He can't talk, but he can sign, he is a really smart kid. She loves him so much.

I guess I am telling you these stories not to have you decide on what to do now, but to show you that in the end, they both had happy endings.

We are wishing all the best for you and your family.

Keeping you and your family in my prayers, Wahraina...

No advice, but I hope for the best for you and your family.