Possibility of neural tube defect...

CocoP2008

My DH and I are expecting our first child. I am 18 weeks today. I live in Canada, so I think some of my terminology might be different than for those of you in the States. I had my blood taken about 3 weeks ago for my maternal serum test (I think this is also called a triple test, and I think others get a quad screen).

My doctor called Monday night with the results. She said I had high levels of something (she didn't say exactly what), that would indicate a high risk for an open neural tube defect. I have an appointment in the nearest city at the children's hospital on Friday morning for an ultrasound, counselling and possible aminocentesis.

I did some research on the internet and know that there are false positives from these blood tests. I have heard of other couples getting a call like mine, going for the ultrasound and everything was fine. I also know that a positive with the blood test just means a high risk, and not necessarily something is 100% wrong.

My dr told me to call her back if I had any questions. I called back yesterday just to confirm that it just meant I was high risk, and nothing was confirmed as wrong. She said my levels were exceptionally high and I shouldn't go to the hospital and expect everything to be fine.

I am hoping she said this just to prepare us for the worst (just in case) and I pray everything is fine with our LO. This is already the longest week of my life and I don't know how I will make it through to the ultrasound on Friday.

Hopefully it will be good news on Friday. I can't even begin to think about the many worse case scenarios and how I would deal with it. My biggest fear is that my baby will not survive...

Please keep us in your T&P. Thanks!

Skruffy

I'm so sorry you have to endure this whole week before finding out. I really hope your ultrasound reveals everything to be normal! That's pretty intimidating of your doctor to phrase it that way

CocoP2008

Skruffy:

I'm so sorry you have to endure this whole week before finding out. I really hope your ultrasound reveals everything to be normal! That's pretty intimidating of your doctor to phrase it that way

It really was intimidating - she kinda burst my last little bubble of hope! I'm hoping she said that in order to prepare us for the worst, instead of saying "yeah, everything will probably be fine" and then finding out it's not.

k8enewlywed

You are definitely in my T and Ps! Let us know how Friday goes I can't believe they are making you wait that long!!!!!!! I have heard of a lot of fake positives and babies being fine in this situation too. I hope that is your case! Is there any way they can move up your appt? GL!

CocoP2008

k8enewlywed:

You are definitely in my T and Ps! Let us know how Friday goes I can't believe they are making you wait that long!!!!!!! I have heard of a lot of fake positives and babies being fine in this situation too. I hope that is your case! Is there any way they can move up your appt? GL!

Thank you, all T&P are very much appreciated! We have only told our parents at this point, so we don't really have too many T&P from those around us. I figured why get everyone worried, when, hopefully, everything is fine.

I doubt they could get me in earlier. I think I'm lucky to even get in within the same week as the phone call. I will post an update on Friday, with hopefully good news!

grapeape73

I know a lot of women who just refuse the triple/quad screen because of the false positives.  I had a friend who just had a "positive" for Down syndrome, and everything is fine with her baby.  I also have another friend whose triple screen was fine, and her son ended up having spine abifida.

Try not to panic, but I will for sure keep you in my thoughts and prayers.

raindrops

Hi, try not to worry.  The triplescreen in also called the AFP test here in the States.  It measures the amount of alphfetoprotein in your blood, there a also a lot of things that can cause this chemical to be elevated too.  Mine was elevated and I was given a risk factor it was 1:66.  My Dr. then did a Sequential scan (different from the NT scan).  I did another blood test, set of level 1 U/S.  These results were then combined with the NT scan I had at 12w.  This gave us better and more reliable results.  After my level II U/S showed not markers, I felt a lot better.  This test does have a lot of false positives.  If you did have the NT Scan done, then this test (Maternal Serum/Triple screen), it is very important your Dr. have both blood test ran through the same lab.  Something that was not done in my case and my Perinatologist believes this was the problem with my test.  Try to relax and talk more with your Dr.  See if the Sequential scan (it will be a good option if you had the NT scan) is available where you are, if not, your level II should put you at ease.  Hugs!

CocoP2008

raindrops:

Hi, try not to worry.  The triplescreen in also called the AFP test here in the States.  It measures the amount of alphfetoprotein in your blood, there a also a lot of things that can cause this chemical to be elevated too.  Mine was elevated and I was given a risk factor it was 1:66.  My Dr. then did a Sequential scan (different from the NT scan).  I did another blood test, set of level 1 U/S.  These results were then combined with the NT scan I had at 12w.  This gave us better and more reliable results.  After my level II U/S showed not markers, I felt a lot better.  This test does have a lot of false positives.  If you did have the NT Scan done, then this test (Maternal Serum/Triple screen), it is very important your Dr. have both blood test ran through the same lab.  Something that was not done in my case and my Perinatologist believes this was the problem with my test.  Try to relax and talk more with your Dr.  See if the Sequential scan (it will be a good option if you had the NT scan) is available where you are, if not, your level II should put you at ease.  Hugs!

Here in my province, we don't get the NT scan. I had an ultrasound early on because of pain; they thought I might have had an ovarian cyst. So that's how they dated how far along I was. Most women around here don't have their first ultrasound until 20 weeks. So the blood work, if you decide to get it, is the first indicator for us if something may be wrong.

I'm not sure what kind of u/s I'll be having on Friday, and I haven't heard anything about a sequential scan. I'm assuming the u/s will be good enough to either confirm something is wrong, or assure us that everything looks fine.

Thanks for the support!

bklyninri

I had a very similar situation as raindrops.  My results left me with a 1 in 33 chance of neural tube.  We had a level II scan and the doctor couldn't see anything to be worried about.  That doesn't mean that there is nothing wrong, but it eliminated the worst case senarios.  Neural tube defects has a very wide range of possibilies.   Many of them leave a baby/child completely functional.  Some, if no test were to be had, go completely unnoticed!   I opted to not have am amnio, but you could find out for sure whether or not your baby has it. 

I completely understand what you are going through.  It is so scary and all you want is to hear the positive!!!  My T & P are with you during this time!

ginleigh

I'm sorry you are going through this, I know - first hand - how scary it is. 

Hi, we found out our baby has a neural tube defect - Spina Bifida - and we found out two weeks ago.  At first, we were devastated, and of course we still wish this were not happening.  However, we have done some research, met with specialists, had lots of tests...and I think we are going to be ok.  It's hard to wait, and hopefully all will be fine for you, but if you have questions I am happy to share what I have learned and point you towards others who have been through similar experiences...and now have happy, healthy babies with a few extra challenges.

Our little boy will need expert medical care, and physical therapy, and he may one day rely on a wheelchair to get around...but he has every opportunity to be a smart little joy in our lives and we can't wait to meet him in person this May! 

 

 

raindrops

At 18 weeks you will probably have a level II U/S (that's the norm here in the states, anyway), they will use it to do an anatomy scan.  It's just a more detail U/S than the level one.  They will take a look at internal organs, bone structure, take measurements, etc.  They are looking for any markers of a defect.  I know so many people, including myself, that have not so desirable test results and the level II is fine.  I will keep you in my prayers, hugs.