need insight - 1 in 9 chance baby has downs *UPDATE POST #35 - Page 2

[Perdita_in_Ontario]

The only thing I can add to these excellent posts is that from what I've read, DS babies can have latch issues (from different sources - cleft lip/palate, cardiac issues tiring them out, or just plan slow to latch). So in your shoes, I'd read up a bit on that as well just to be sure you're aware of the potential issues (not a bad idea in any case).

Although I didn't have prenatal testing done, because of my age there is an increased risk for DS, so I have done a little reading just so I'm not totally a blank slate if it were to happen.

[akat]

Just wanted to post my experience, in case it could be helpful.

I got a 1 in 20 chance for Downs from the screening. I felt very stressed by it and couldn't handle not knowing for sure. I decided to do an amnio even though I had always felt very negatively toward them before this happened. The doctor who performed mine has a personal miscarriage rate of 1 in 1500 [as opposed to the general, average rate often quoted of about 1 in 200 or whatever], so I felt really safe. It came back negative for all of the syndromes.

I had been feeling very worried and sad, had lots of stress chemicals running through my body, and was having trouble eating properly and sleeping, so I felt like for me getting the amnio was the safest, healthiest thing to do for the baby. Even if I found out the baby did have Downs, I feel like I would have been able to move toward acceptance and be less stressed and it still would have been healthier.

I asked the midwives if they would do anything different at birth [like would they make me have a c-section or scheduled induction or something] and they said they didn't think so, other than maybe have a specialist pediatrician on hand at the birth in case of problems.

[caro113]

I've never been in the situation, nor do I know anyone who was, but I did have a friend who had a friend in a similar situation. She, too, declined the amnio because she wasn't going to terminate either way. Personally, I would go with the 20 week scan, but they can still miss something. If anything, I would just read up on DS and prepare mentally, emotional, physically for it. I wouldn't want an amnio either and I also would terminate, but I would want to know, if only to attempt to prepare myself and meet up with other moms who have a child with DS so I have someone to talk to.

I hope everything goes well for you!

[soso-lynn]

The main immediate risk after birth is CHD so the ultrasound is warranted. There is no real benefit to an amnio unless you are planning to terminate the pregnancy. From a medical perspective, the course of action if it comes back positive for Down's is to do ultrasounds to check for heart defects so if you're doing that anyway there is no point to the amnio.

[olien]

Originally Posted by JL83

My question is whether or not knowing about DS would influence your birthing choices.

I would NOT have a baby with Downs at home because of the potential for birth defects and needing medical attention. So, in our case, I would want to know for sure (because I am planning a home birth).

But, if I was planning a hospital birth, I wouldn't have the same need to know.

We will be having this babe in a hosp with the best NICU in the area.

Originally Posted by berrymama

The other option is to have an amnio at 37 weeks so that if it causes labor you are term. If it doesn't cause labor, you will likely have the final karotype prior to delivery (it takes about a week for results) so you could either be prepared for a baby with DS or go into labor with nothing at all to worry about.

Great idea. It didnt even cross my mind to do it later on. I would probably feel better about it then, but I still dont know if I would have the guts to do it.

Originally Posted by jeliphish

Do you have access to your lab work? Do you know your hcg levels along with your papp-a levels? Can you share... I researched my test outcomes to death when I came up high risk. I may be able to share more detailed info if I can get all of your blood level readings - including all "MoM" readings. If you get the readings you will see "MoM" and know what I'm talking about. Its" multiples of the medium."

Wow. I didnt even think to get my lab results. I didnt know they would reveal anything. Do they usually test the hcg level with this test? I will call tomorrow. Any insight you can give will be great. Thanks!

Originally Posted by JaymeH

I read your post, so I had to at least offer a hug. And for what it's worth, no matter what your decision, you may decide to look into some different local organizations that support families with downs kiddos. I have an acquaintance who mentors families that find out they have a downs kiddo (whether before or after birth, depends on when the families are receiving the news). It might be helpful to talk to a mentor family.

mentor family - what a good idea.

Originally Posted by Perdita_in_Ontario

The only thing I can add to these excellent posts is that from what I've read, DS babies can have latch issues (from different sources - cleft lip/palate, cardiac issues tiring them out, or just plan slow to latch). So in your shoes, I'd read up a bit on that as well just to be sure you're aware of the potential issues (not a bad idea in any case).

Wow so much to learn. I am going to hold off on the extensive research until I see the results of the 20wk US.

Originally Posted by soso-lynn

The main immediate risk after birth is CHD so the ultrasound is warranted. There is no real benefit to an amnio unless you are planning to terminate the pregnancy. From a medical perspective, the course of action if it comes back positive for Down's is to do ultrasounds to check for heart defects so if you're doing that anyway there is no point to the amnio.

What is CHD??

BTW thanks for all of the responses & hugs. I need them! Sorry for the delayed response too.

[Vespertina]

CHD = congenital heart defect/s

[berrymama]

I just wanted to add that a fetal echo cardiogram will pick up on heart defects that could even be missed on a level 2 ultrasound. Therefore, we decided to forego the level 2 ultrasound (we had a regular 20 week scan that showed the original soft markers), and just get the fetal echo so we could be prepared or change our birth plans since we are planning on a homebirth.

[sprouthead]

Originally Posted by Kidzaplenty

The way I see it, you have an 8 in 9 chance of having a perfectly normal baby.

I would trust your instinct and do what you feel you should.

she will have a perfectly normal baby no matter what the outcome.

[MySunflowerBoys]

Originally Posted by sprouthead

she will have a perfectly normal baby no matter what the outcome.

well said! I think my little one with Down syndrome is a perfectly normal little boy and was a beautiful baby.

[olien]

Originally Posted by jeliphish

Do you have access to your lab work? Do you know your hcg levels along with your papp-a levels? Can you share... I researched my test outcomes to death when I came up high risk. I may be able to share more detailed info if I can get all of your blood level readings - including all "MoM" readings. If you get the readings you will see "MoM" and know what I'm talking about. Its" multiples of the medium."

I called the Dr today. They are faxing DH the results. I will have them tonight. Do you want me to privately send them to you or just post them? I dont care if they are posted. If you have info that could help others besides me that would be cool.

[mamaonthefarm]

Originally Posted by olien

I called the Dr today. They are faxing DH the results. I will have them tonight. Do you want me to privately send them to you or just post them? I dont care if they are posted. If you have info that could help others besides me that would be cool.

I would like to see them too (as I have researched this a lot too!) - If you are comfortable posting the results here, I would be interested to read them. Otherwise, if you feel like it, you could pm me them.
Wishing you the best,
Mamaonthefarm

[olien]

DH left the results at work . I'll post them tomorrow.

[olien]

OK. I will try to list what looks to be important.

Results:
NT: 1.00 MoM
PAPP-A: 2.34 MoM
AFP: 0.67 MoM - MoM cutoff: < 2.50
HCG: 1.75 MoM
UE3: 0.72 MoM
Inhibin: 3.52 MoM

DS Screening Risk: 1:9 Age related risk: 1:67
Trisomy 18: 1:10,000 Age related risk:1:260
ONTD: 1:6000 Age related risk: N/A

Any info would be great. Thanks

[mamaonthefarm]

Originally Posted by olien

OK. I will try to list what looks to be important.

Results:
NT: 1.00 MoM
PAPP-A: 2.34 MoM
AFP: 0.67 MoM - MoM cutoff: < 2.50
HCG: 1.75 MoM
UE3: 0.72 MoM
Inhibin: 3.52 MoM

DS Screening Risk: 1:9 Age related risk: 1:67
Trisomy 18: 1:10,000 Age related risk:1:260
ONTD: 1:6000 Age related risk: N/A

Any info would be great. Thanks

I'll pm ya with whatever info I can scrounge up

[olien]

Update

Had the Genetic ultrasound today (20wks)

The dr said she could not find ANY abnormalities at all. A completely normal screening.
Bec the US is not 100% she could only raise my risk factor to 1:45, but I'll take it.

She advised if we decided to do an amnio to do it ASAP & not do it past 24-26wks. I know many of you suggested doing one around wks 35/36. I liked that idea, but she felt quite strongly that to end up having a premie bec of probs related to the amnio along with a baby with chromosomal abnormalitites (If test is pos) is just a double whammy & not necessary. I hadnt thought of it that way.

Right now we are leaning toward not doing the amnio at all.

*Oh yeah. heres some interesting info. We also had a high risk with DS1 - 1:67 -after the 2nd tri blood work. The Dr said it is a little known fact that if you have a false positive once with the blood work you are more likely to have subsequent false positives. She doesnt know why this info is not more common knowledge.*

Thanks for all of your support!!!
Mamaonthefarm: thanks for your help!!

[sprouthead]

that sounds like good news!

i'm still confused about the amnio/preemie part. does the risk for a premature birth go up the later into your pregnancy you have the amnio performed? because if my baby's going to be early, i'd *much* rather have it born at 35 or 36 weeks than before 26 weeks...

[mamaonthefarm]

Originally Posted by olien

Had the Genetic ultrasound today (20wks)

The dr said she could not find ANY abnormalities at all. A completely normal screening.
Bec the US is not 100% she could only raise my risk factor to 1:45, but I'll take it.

She advised if we decided to do an amnio to do it ASAP & not do it past 24-26wks. I know many of you suggested doing one around wks 35/36. I liked that idea, but she felt quite strongly that to end up having a premie bec of probs related to the amnio along with a baby with chromosomal abnormalitites (If test is pos) is just a double whammy & not necessary. I hadnt thought of it that way.

Right now we are leaning toward not doing the amnio at all.

*Oh yeah. heres some interesting info. We also had a high risk with DS1 - 1:67 -after the 2nd tri blood work. The Dr said it is a little known fact that if you have a false positive once with the blood work you are more likely to have subsequent false positives. She doesnt know why this info is not more common knowledge.*

Thanks for all of your support!!!
Mamaonthefarm: thanks for your help!!

Yay! All of that sounds really reassuring! Yes, I've heard anecdotally of false positives running in families too.

Mamaonthefarm

[olien]

Originally Posted by sprouthead

that sounds like good news!

i'm still confused about the amnio/preemie part. does the risk for a premature birth go up the later into your pregnancy you have the amnio performed? because if my baby's going to be early, i'd *much* rather have it born at 35 or 36 weeks than before 26 weeks...

The Dr said there is a definite risk of breaking the water if you do an amnio late in a preg.

I got the feeling from her, although she didnt actually say, that it could be less traumatic, heartbreaking, etc... to lose the preg at 20 - 24wks from an amnio than to have a baby that possibly could have complications from being a preemie & complications from having something wrong also. Instead of just waiting to full term & have a full term, healthier baby with something wrong.

She did say she has had many people over the years that were 'comitted to the preg' & decided to do an amnio late so the preg wouldnt terminate if something did go wrong.

BTW, I'm with you on this one

[babyonboard]

.Hi Jeliphish,

I know this posting was from a while ago.. If you get this email, it would be great if you could repsond to me.  I am interested in the research you did on the hCG.  I've done my own research, and from what I have found I am almost confident that my chemicals and my baby are just fine.  My MoM for hCG was 2.3 at 11 wks 3d, and 2.44 at 16wks,3d.

Well I hope you are still around : )  I would love to hear any insight you might be able to share w/ me.

Thanks so much,

babyonboard