Pregnancy AFP screenings - trisomy 18 risk

[mrsltg]

No, I have not heard of that test. The doctor who saw me today just called (nice to know he cared enough to call and check on me this late). He asked what I had decided to do - I really think he is pushing for me to have the amnio and that alone worries me. I had a chance to ask a few questions - basically at my 11 week u/s they had said the baby measured about a week smaller than my dates should have put it at. He said that these measurements put her in the normal range for my original due date (the earlier one) and we discussed the level II that would be performed. He said his recommendation is to proceed with the amnio and the second doc would most likely agree even if they don't see any markers. He said the u/s today showed nothing abnormal though - and he said his tech is really good and thorough which is reassuring. I am going to call in the morning and tell them to set enough time aside to go ahead with the amnio at the level II ultrasound. I really need to know. I have decided that much. I know some of you feel that it might be the wrong thing to do given the chance of miscarriage but I truly think I will lose my sanity if I don't find out for sure.

So, tell me about this test you mention - is it basically the same as the level II?

I wish I could hug you! I know EXACTLY what you're going through. These tests are supposed to be reassuring and sometimes, they're not. And when they're not reassuring, they are flat out terrifying. The Level II will show with great clarity exactly what is going on. Lack of heart defects is a big plus for you! Unfortunately you are passed the time for the nuchal test but at this point nothing is going to be as accurate as the Level II coupled with the amnio. For now, take it minute by minute. Try, as best as you can, to think about something else. You will come to the right decisions no matter what they are. Honestly, the fact that your doctor doesn't have you in for further screening immediately is also a fairly positive sign. I got the call and 2 hours later was being given devastating news by the specialist. I wish you peace in this difficult time and will say a prayer for you and your family.


TO the poster who referred to OB's as being basically fear-mongers- how great for you that everything was perfect. In the vast majority of the cases everything is fine. However, when you hit the wrong one in a million lottery your perspective changes dramatically. Perhaps not spouting off about something you - happily - know nothing about would be better in this case.

 

[mla2177]

My triple screen test came back positive for Downs Syndrome with my son. I had a level two ultrasound done which all came back ok, but still couldn't guarantee 100%. They did give us the option of the amnio, but like other posters have said, we would not abort the baby regardless. He was born without Downs. I have since learned that the triple screen test is not very accurate. I have a friend whose test came back ok, and ended up delivering a child with Downs.

 

[Luv'sTink]

"We wouldn't have aborted anyway"

Why do people act like the only reason to have an amnio is to abort the baby? Is it really that hard to believe people feel like they NEED to know and want to be informed?!

Babies with T-18 need to be monitored closely before birth, during delivery and after birth. T-18 parents first hope that their babies make it to birth, then they hope they make it through delivery and then the real fight begins. Amnio's are done to diagnose other problems too.

 

[phillybeth]

"We wouldn't have aborted anyway"

Why do people act like the only reason to have an amnio is to abort the baby? Is it really that hard to believe people feel like they NEED to know and want to be informed?!

Babies with T-18 need to be monitored closely before birth, during delivery and after birth. T-18 parents first hope that their babies make it to birth, then they hope they make it through delivery and then the real fight begins. Amnio's are done to diagnose other problems too.

I totally agree. I'd rather know and plan (for good or bad) then spend the rest of my pregnancy worrying.

For many people who know they are having a child with a fatal condition, knowing and planning allow them to spend as much time as possible with their child. So people want everything done to save their child, others prefer to give comfort care and let nature take its course. Knowing in advance gives you the opportunity to have all this worked out ahead of time.

I'd rather have 10 precious minutes with my child without any intervention, than have that time spent making on-the-fly decisions because I didn't know ahead of time. Get the shock over with weeks ahead of time so I can enjoy each breath my baby takes. Make all the hard decisions early, so all I have to do is love and grieve.

 

[kami2199]

And now the wait begins...the appointment with the specialist is next Wednesday. I know in my heart that given the odds and the false positive rates as well as the good ultrasound that my chances of her having this are slim but it scares the crap out of me and I have to know regardless. The nurse said this morning that the other doctor will decide if I need the amnio, I can't just make an appointment for that...I finally decide that I want it for sure and now may not end up having it - what a roller coaster. I guess I will just have to take what the doctor says (if everything still appears ok) and try not to worry the rest of the pregnancy - easier said than done! Thanks again for all the support and encouragement.

 

[kami2199]

Just wanted to update everyone...went to the level II ultrasound today. They found NOTHING that would lead them to believe my baby has T 18. After stewing over what we would do for the last week, my husband and I decided that if a marker was found we would go ahead with the amnio and if not (and also based on the reaction from the doctor) we would leave it be and not take the risk of the procedure. He told me that based on what he's seen so far, he does not think she has it but made sure we knew that some don't show any markers in the ultrasound. We feel that what will be will be and we will deal with it if the time comes and in the meanwhile hope for the best.

I just wanted to say a big THANK YOU to all that PM'd me and posted on this thread. It was a very hard decision to make and I hope it was the right one. I just couldn't take the risk nor could I have lived with the guilt of making that decision and having a bad outcome if she is indeed perfectly healthy.

 

[Luv'sTink]

I am glad they found no markers, I honestly feel he told you some don't have markers just to protect himself and that your daughter will be born healthy!

I know you will still be worried but try to have a happy pregnancy and congratulations!

 

[helenabear]

I am glad they found no markers, I honestly feel he told you some don't have markers just to protect himself and that your daughter will be born healthy!

ITA! I belive all docs would say that as a CYA type of thing. I would take this to be wonderful news.

I do hope the remainder of your pregnancy is healthy and uneventful

 

[mum4jenn]

This is WONDERFUL news!! Thanks for the update...you have been in my thoughts.

 

[HERSEY]

Glad the ultrasound gave you hope. Try not to look back. Life is full of what if's. Your decision is right for you and your family.

 

[CJBaby]

Great news!!! Thanks for updating! And I just said a prayer for your baby.