Trying not to freak out

chance_encounters · December 2013

My Dr. Just called and my prenatal screening came back 1:6 that the baby will have Down syndrome. She had me go straight in for the Martni21 test. Has anyone else had this happen? What were your end results? If it turned out positive, how are you preparing for a special needs baby? Thank you ladies.

sassy1 · December 2013

We screened positive for elevated downs risk from the blood work & went back for the Verifi test. It was a very hard wait, & all we could do was just keep as busy as possible. Results were negative with the 2nd test. Try to make lots of plans with friends & work on your to-do lists right now...whatever will help keep you busy til you have a reliable result from MaterniT21. ((Hugs))

apmom · December 2013

One of my best GFs had this happen, results were negative at the second test.

apmom · December 2013

Also, I am the mom of an autistic child, and I just want to say that having a child with special needs can be overwhelming and challenging and scary and amazing and rewarding and inspiring... I hope everything is fine, that the results come back negative, and I completely understand how you are feeling right now. Sassy1 has some great advice, try to stay positive. GL!

chance_encounters · December 2013

Thank you ladies.

djtippietoes · December 2013

I had a 1/28 chance. I ended up getting an amnio and it came out with normal chromosomes.

The waiting sucks! I'm sorry you are going through this.

lizok22 · December 2013

Hi I just posted about this. See AMA and testing. Yes, this happened to me with my first trimester screen, then I did verifi and was negative. My quad came back even more elevated:1 in 89 and my doctor called me and worried me all over again by saying the verifi is not 100% but apparently my doctor is in the minority by doing this. I have done extensive research on the internet on these tests(believe me you read about everything that could possibly go wrong on babycenter), and I have only come across one false negative and that was back in 2012 and the woman had an elevated nuchal. Good luck to you and here's hoping for the best. This pregnancy has scared the heck outta me.

Melissa72777 · December 2013

I unfortunately do not have any advice for you but I just wanted to say that my thoughts and prayers are with you. Hoping for good results for you at the next test.

obscurereference · December 2013

Thinking of you and hoping everything turns out fine!

kelley72 · December 2013

Ts and Ps that you and your lo are healthy and happy! The results of course can be scary but the Mat 21 will give you more specific ratio for you as opposed to just a pg woman in your age category. Educate yourself and allow yourself to feel how you feel- I'm guessing your test was from a Quad screening? Have you had a level 2 ultrasound? I hope you get more concrete answers

chance_encounters · December 2013

@kelley72 you are correct that was from the quad screening. I did have an NT scan, not sure if that is the same as a level 2 u/s but the gap on the neck was 2.8....so the high end of normal. But they were also having trouble getting a good measurement because the baby was not cooperating.

CaraH · January 2014

So, here's hoping that further testing relieves your mind and makes all of this unnecessary. But, my nephew is 14 months and profoundly special needs. In his case, it wasn't something we knew of in advance, but having that experience here's what I would do if I learned we were likely to have a special needs baby. Find other parents who have raised a child with similar needs and are well in to it (at least 5 or 6) years, if you let your community know someone always knows someone, no matter how rare the issue. And in our experience they are always willing to talk and are an invaluable resource. Be choosy about who you spend your time with; you need peoplewho support, not drain you. For this reason, my sister has learned to be careful about suppirt groups. That said, check out the support groups. And try to figure out if you prefer in person or on line while you're at it. Everyone needs different things. Learn as much as you can about the issue, knowledge is power and you need to know what to ask, what to push for and when to change doctors. Talk to your support system; they want to help but they need to know how. Find a good counselor, so you have a place that can be no holds barred. Research your insurance options, and try to reduce the stress of surprises as much as you can. And finally, know that being frustrated, tired, scared, sad, etc doesn't take anything away from your love for your child. And everyone else gets that, too. Well, except those well- earning strangers at the grocery store who have no idea what your life is like. But, they really don't matter. Sending , lots of healthy, positive thoughts to your little one. But, if you have to walk this path, it will still be okay. Harder, but it's amazing what love will get you through.