aminocentesis.....do it or not????

Alicia_Japan

Hi!

 I  am 16 weeks pregnant and 36.  I will be 37 when I deliver.  We just got our triple screen blood work done and my number for Down Syndrome came back at a 1/40 chance (normal for my age was 1/239)  The doctor recommended a aminocentesis.  We are pretty sure we would not terminate the pregnancy.  I don't know what to do.  I would like to know the result....either way, to help prepare.  Is it silly to get the test, if you know you will keep the baby anyways?  Our insurance does not cover it and it will be $1000.  I want to peace of mind, but should I take the risk of miscarriage just for that??  What would you do in my shoes??

JenniferTCU

Hi there! First off, congrats on your pregnancy and welcome to the board! You will undoubtedly get a lot of good, encouraging words here.

I can't tell you what I'd do if I were you but I can tell you what I did. I am 40. After my bloodwork, my odds were 1/165 for DS. I opted for the amnio. The day we got the amnio, we had our second round of bloodwork- which helped improve our odds dramatically. The amnio gave us the info we wanted (results were great).

For some on this board, their results were STAGGERING after their second round of bloodwork. Their odds improved a ton. So some have decided to wait until after that.

Whatever you decide, I am sure you'll make the right decision for you and your family.

rsd12

It is such a personal decision, I would highly suggest you talk to your partner & your doctor about your options, as well as their % of miscarriage rates in their practice with the amnio.

What I have done:

While I would never terminate, I still think it is important to be prepared for the birth of our child - but I have some experience... With my 1st we found out at the big u/s that he was going to be born with a birth defect, we did not know the severity so we opted to have the amnio done at 23 weeks (after a level II u/s).  In some ways it was a relief to see the results that his birth defect was isolated.. but your baby is going to be perfect to you no matter what.

So then, each pregnancy is considered higher risk.. & after all of our non-invasive testing (NT scan & blood work, AFP bloodwork - only with current pregnancy, level II u/s) - for my 2nd child (we did have a scare after he was born, something that the AFP bloodwork or amnio would have found, but not an u/s) & current pregnancy came back great we opted not to have the amnio. In addition my doctor did not recommend one & actually told me that I am considered low risk during those pregnancies.

Good luck with your decision, I know how exciting & scary all of this can be!

Laura Cochran

I think it is perfectly reasonable to want to have the amnio after having a screen with high risk results. If you find out the baby does have DS you can prepare for the birth and raising a child with special needs. By knowing, your dr. can arrange for you to deliver at a hospital that is more equipped for such a birth, have a specialist on hand, etc and you can learn about DS, talk to other parents, find a support system before you are overwhelmed with just caring for a newborn infant.

 

MrsKLS

I was in your exact shoes with my DD. I had the NT test and came back with a risk level of 1/35 for DS. I was 35 at the time. I went ahead and had the amnio....I HAD to know if she was healthy or not...I am the kind that had to be prepared for everything and if there was something wrong I wanted to be informed and have things ready when she was born. Thankfully my amnio came back 100% perfect!!! I plant to have an amnio with this baby as well.

If you go ahead an do the amnio I would advise you to ask if they can do the FISH test...basically I think it is strictly a chromosone count and you get those results 24-48hr and then the full results of the amnio come in about 10-14 days. 

 

Good Luck!!!

BrideBuddies

I always have a slightly different take on this than some people.

First, do the math.  A 1 in 40 chance is 2.5%.  Yes, that's considered high.  But that's also a 97.5% chance that the baby's just fine.   My risk for DS is actually higher than that, 1:5.   

But we still decided it wasn't worth the risk of miscarriage with amnio or CVS since this is probably our one-and-only chance at having a child.  And there was no way in Heck we would consider termination under any circumstances due to religious beliefs.  It is what it is. Glass half-full rather than half-empty.

As for the debate about "needing to know" and "being prepared."   Well, with a 1:5 chance, I think I'm extremely prepared.  I've read all kinds of things about Downs and kids with special needs.  I've talked to people with DS children.  I've discussed it extensively with my doctor.  Mentally, I know it's a possibility, so I'm ready for any surprises.  What more can you do, really until the kid actually arrives?

At the Level II U/S, everything looked great and there's no signs at all of Tri-18 (which I'm also considered high risk for) or DS.  And Baby was measuring ahead of EDD, so no evidence of shortened limbs, heart issues or anything else that's very common for DS kids.   Tomorrow, I have the 3D U/S and that will hopefully give us more reassurance.

Good luck in making your decision.  You just have to follow your heart.

gotchagomo

Remember that amnio tests for other things besides just DS. In the case of spina bifida, for example, surgery is now often performed in the womb with no scarring. Advance knowledge can also enable the hospital to assemble the needed team of experts/doctors/surgeons so everyone can hit the ground running and avoid wasting precious time. Amnio is NOT about termination. Preparation is key with any delivery, but much more so with a possible critical case that some syndromes present, and for me, that preparation extends to much more than talking to parents of children with DS or discussions with doctors--I would want the team there in delivery and ready to go if I was expecting a child with a severe disability.You must do what you are comfortable with--if not knowing for sure is going to keep you from enjoying your pregnancy, well, then, there's your answer...

Peppernut

It's such a subjective decision. 

I'm a "need to know" type.  I tend to dwell on things, and let them get bigger than they really are.  For me, even though my results were okay on the NT scan, I felt I needed the amnio to keep myself from stressing over nothing.  As it happens, they found some soft markers at the 20 week ultrasound which would have completely freaked me out if I hadn't already had an amnio come back clean.

Of course, I also have an experienced perinatologist as my OB at a high-risk practice, and he'd never had a loss doing an amnio.

Alicia_Japan

Hi Ladies!!

 I was so surprised to get so much feedback and so quickly.  I wanted to thank each and everyone of you for giving me your opinion.  It is so nice to know we are not alone and that many of us our dealing with little bumps in the road at times.  I know there is no wrong answer....just different roads to travel.   We have a consult scheduled for the 28 th of this month and we will decide then.  I think I am leaning towards doing it.  I like to be prepared.  I am a planner. It is just my personality.  My husband is ultra  supportive and wants me to do what I feel comfortable with.   I just think either way the test comes out, I will sleep better at night knowing.

 

Again....thanks so much for your thoughts on the matter.

BarefootContess

BrideBuddies:

I always have a slightly different take on this than some people.

First, do the math.  A 1 in 40 chance is 2.5%.  Yes, that's considered high.  But that's also a 97.5% chance that the baby's just fine.   My risk for DS is actually higher than that, 1:5.   

But we still decided it wasn't worth the risk of miscarriage with amnio or CVS since this is probably our one-and-only chance at having a child.  And there was no way in Heck we would consider termination under any circumstances due to religious beliefs.  It is what it is. Glass half-full rather than half-empty.

As for the debate about "needing to know" and "being prepared."   Well, with a 1:5 chance, I think I'm extremely prepared.  I've read all kinds of things about Downs and kids with special needs.  I've talked to people with DS children.  I've discussed it extensively with my doctor.  Mentally, I know it's a possibility, so I'm ready for any surprises.  What more can you do, really until the kid actually arrives?

At the Level II U/S, everything looked great and there's no signs at all of Tri-18 (which I'm also considered high risk for) or DS.  And Baby was measuring ahead of EDD, so no evidence of shortened limbs, heart issues or anything else that's very common for DS kids.   Tomorrow, I have the 3D U/S and that will hopefully give us more reassurance.

Good luck in making your decision.  You just have to follow your heart.

Best wishes BrideBuddies on your US tomorrow.  

NewMrs07

It depends. Since you're not going to terminate you have to think about whether you can go the rest of the pregnancy not knowing for sure or if you want to know right away so you can either relax or prepare. Personally, with those odds, I would have it. GL with your decision!

KGsky

I'd say do it, especially if you will spend the remainder of your pregnancy worrying about is s/he or isn't s/he?  Since you know you won't terminate, that's not a factor in the decision, but it may help you either have peace of mind, or come to terms before baby gets here.  But like BB said, 97.5 % chance of a healthy baby, so I'd get the peace of mind.