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MerinSun December 20th, 2012 11:44 AM

Overall just a very bad appointment - Final Happy Update!
 
I made an appointment today for a persistent cough (been going on for 3 weeks now). 5 minutes after making the appointment I get a call from the doctor's asking if I could come in to talk to my midwife. I tell them that i"m already coming in. Now I was very nervous. I had done the Quad blood test and I had an appointment for next week. So I knew already that it couldn't be good news.

Well, I see the first doctor and find out that I've been walking around with bronchitis - wheeeee! Have to do the inhaler all that. Then my midwife walks in :(

She said that the results were in and that the numbers show a significant increased risk of my baby having Down's. I knew enough to know that an increased risk does not mean "has Down's". She told me my options and I said that I would not do an amniocentesis. Thankfully there is another option in the form of another blood test. So now I have to make an appointment for that.

I'm trying to not freak out. I know that false positives happen and that due to the uncertainty of my LMP it is likely that there was just a testing error. I told the midwife that I won't begin to panic or plan anything until I know the results of that blood test. If that one comes back positive as well then we'll have a much longer conversation.

I'm not too keen on the idea of termination. I am a pro-life person but I also respect the rights of families to decide if a particular disability (something that is significant, not necessarily just lifestyle changes) is something that they can handle. I would always advocate for the continuance of the pregnancy but let's face it; if you knew your kid would be born with that chromosomal disease that makes their skin fall off at the slightest touch you would at least consider it.

We're not going to tell any family or friends until we know the results of the new blood test. I just don't want to deal with their drama, lol.

sunnydaze December 20th, 2012 11:50 AM

Re: Overall just a very bad appointment
 
hang in there mama, don't freak out yet!!!

I know it has to be scary but really those tests are rather unreliable.

MrsLat December 20th, 2012 11:58 AM

Re: Overall just a very bad appointment
 
I agree. Don't get too worried until you have the results of the blood test. There really are a lot of false positives. I know that a lot of women decline any of the screenings because it can bring on a lot of unnecessary worrying. I am so sorry that you have to deal with this stress :(

mommyandwife08 December 20th, 2012 12:04 PM

Re: Overall just a very bad appointment
 
Sorry you are going through this. I hope you get some good results from the next blood test.

zkat December 20th, 2012 12:04 PM

Re: Overall just a very bad appointment
 
Hang in there, I know it is scary.

Something interesting the genetic counselor told me is that using the mother's age to determine odds results in a lot of false alarms and is an antiquated way of determining risks for downs. All they do on the quad screen is look for certain hormone levels, some high and some low. A lot of things can impact those levels, including being off on dates. Did she say what the risks were?

My sisters dear friend came back with a 1:40 chance of having downs. An amnio confirmed no Down's. She did have Pre-E which may have impacted the results.

My guess is the test they want to do is Matrni21 or Harmony. It pulls the baby's DNA from your blood and checks the chromosomes. For down's - it is about 99% accurate. Other Trisomy's it is a little less 95% but it is because they are much rarer.

Big hugs. We are here for you in the meantime.

Kat.

phantomsgrl11 December 20th, 2012 12:25 PM

Re: Overall just a very bad appointment
 
Yeah that is part of the reason I refused any screenings because I just don't want to deal with the false positives and the scares. Being pregnant is worrisome and scary enough if you ask me. We are definitely here to talk to if you while you wait the results of the next test. I will be crossing all my fingers and toes for good results for you.

MerinSun December 20th, 2012 01:33 PM

Re: Overall just a very bad appointment
 
Thank you! Yes, Matrni21 is the blood test they want to do. There is no risk to me or the baby with it. As I said, I refuse to the amnicentesis because I won't risk the survival of a potentially viable baby. Down's is a very serious thing but many people with Down's are able to live full and happy lives.

zkat December 20th, 2012 01:40 PM

Re: Overall just a very bad appointment
 
Quote:

Originally Posted by MerinSun (Post 26893763)
Thank you! Yes, Matrni21 is the blood test they want to do. There is no risk to me or the baby with it. As I said, I refuse to the amnicentesis because I won't risk the survival of a potentially viable baby. Down's is a very serious thing but many people with Down's are able to live full and happy lives.

I opted for Matrni21 over the quad screen and am waiting on the results now. It is a simple blood draw. A couple of vials and you are done. I agree with you on the risks of the amnio.

eshute December 20th, 2012 01:51 PM

Re: Overall just a very bad appointment
 
That has to be so scary! But as the other ladies have mentioned, there are a ton of false positives and hopefully you'll get great news with the Matrni21. On a side note,
my baby's dad's aunt has Downs and she is married and lives with her husband by themselves. They need a little extra help, but they're mainly independent. I'm not sure if that's helpful or not, but I guess what I'm saying is that even if you get a positive result, your child could live a long, healthy, wonderful life regardless of Down's. Good luck and keep us posted! :dothug:

navywifey2003 December 20th, 2012 01:59 PM

Re: Overall just a very bad appointment
 
Huge hugs Hun! Thinking of you. I agree with the other ladies that it has such a high false positive rate which is why we opted out. Thinking of you

LisaS December 20th, 2012 05:11 PM

Re: Overall just a very bad appointment
 
Sending good thoughts your way.

Kim3 December 20th, 2012 05:52 PM

Re: Overall just a very bad appointment
 
Sending you prayers. Just wanted to let you know that I did the Harmony (which is similar to Materni21 - just another lab). It took 11 calendar days to return. While they say it remains a screening test, they are testing actual baby cells within your blood. My doc believes it will ultimately replace the CVS and amnio. I am sorry - but I do not know your age. I am 39. That factor alone increases my odds of making the quad screen come back as a false positive- so I decided to go straight to the Harmony. As I understand it, the quad screen was designed to tell women whether there was even a reason to test further. It separated those with nearly no chance of a problem from those with some chance (even if that chance is only 1/150 - meaning 149 would be healthy). I wish I could say something to make you feel reassured - but I suspect I cannot (I know I needed the actual results to make me feel better.). I hope you get your results quickly.

shen7 December 20th, 2012 08:37 PM

Ditto other ladies... the quad screen is simply not very accurate, and 5-15% of all women tested get false positives- elevated risk results despite no problem (depending on how properly implemented it was). It also only catches 85-90% of all cases of Downs. I also went straight to MaterniT21, it is almost as accurate as amnio and has barely any false positives for Downs. I am only 31 but was highly unimpressed with the quad screen statistics and did not want to go that route.

enchantingdragon December 20th, 2012 09:29 PM

Re: Overall just a very bad appointment
 
Aww hugs. I will be thinking of you and hoping its just a false positive

SassySami December 21st, 2012 12:45 AM

Re: Overall just a very bad appointment
 
hugs! whatever the outcome, everything will be fine1

Kim3 December 21st, 2012 06:07 AM

Re: Overall just a very bad appointment
 
Prayers for a healthy result. I just wanted to say that I have a son who the "state" says is disabled. Before 2 he was diagnosed on the Austism Spectrum with PPD-NOS. At age 4 that was changed to Aspergers (which is on the Spectrum). We have had our challenges. Sensory integration and feeding issues. We did almost 3 years of 30 hours per week of therapy. We did Speech, OT, PT, and feeding therapy. I cried and mourned at the time of the diagnosis. At age 10, he is doing incredible. He is in regular school with excellerated classes (yes a math and science nerd). He has friends (not millions but three good ones) :cool: One thing - he has never learned to be mean. He lives by rules and he knows the rule be kind. He loves unconditionally. Today I would not change him to be "normal" if I could because then he would not be the boy he is. He has a bright future in store for him even if it may be a little different. I share only to give hope to those who may have upsetting tests in the future.

pamela.burke611 December 21st, 2012 08:18 AM

Re: Overall just a very bad appointment
 
I'm praying for you and your little one, doll <3

MomtoKy December 21st, 2012 08:45 AM

Re: Overall just a very bad appointment
 
I am keeping my fingers and toes crossed that the blood test comes out okay! Stay positive, as to not put any extra stress on the baby!

MerinSun December 21st, 2012 12:55 PM

Re: Overall just a very bad appointment
 
Well, today I went to the hospital to get the blood test. When I tried to schedule it over the phone the scheduling people said that I could just walk in. So big surprise when I walked in and was told that I'm in the wrong office. I go to the correct office and the receptionist said "We only do those with an appointment".

Anyone who has ever driven in Cincinnati knows how pissed off I was at that point, lol.

She gave me the number again for the scheduling department but when I told her that I could only give them the same info and will most assuredly get directed to the same office, she decided to make the call with me. About 1 minute into it it was clear the scheduling people had no idea what to do with me. The receptionist actually had to pull out coding books to help them figure it out! I was really glad that I made the receptionist so impatient to get rid of me that she made the call, lol. It spared me a lot of grief on the phone.

My blood work test and ultrasound will be on the 28th. I'm glad for the ultrasound :)

shen7 December 21st, 2012 05:04 PM

UGH I hate incompetent low level medical people. So much stupidity. One competent person can make it all okay, but boy do you need to find that one person!!! Haha.

I am so glad you have it all scheduled now. I hope the ultrasound helps put your mind at ease while you wait on the MaterniT21 results! Remember, a risk of 1/40 is only 2.25% (if I can still do math in my head), that is not a very big chance, most likely baby is fine!! Hugs.


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