Dh and I were at the hospital at 8am and met with the counselor.
It was tough. Neither of us slept much last night and as soon as we sat down in her office I started sobbing again.
She explained a little more in detail about the results. We tested 1 in 127 for downs and 1 in 2,981 for the trisomy 18 and 13 ( I think those were the two). On no sleep a migraine and crying fits its a little fuzzy...really tried to focus. She said before the test my chances were 1 in 83 .... How she got to that number I'm not sure., but she mentioned how they take your h c g, age, weight, a few other things... But after the test , I got 1 in 127. This slight increase over 1 in 83 just doesn't make me want to jump for joy and of course she said they would have liked a much higher number. Specifically my free beta was 78.59 (80th percentile). Papp-A was 0.52 which had me in the 20th percentile and the nt fold which today I found out was 1.2 not 1.1 like the tech told me (yes still in normal range but I wish they were a little more careful in delivering the numbers). Also was told that a thin measurement does not guarantee no downs and even if you get say 1 in 1150, this too is no guarantee of no downs. But still.....
She asked us a history of our families. Neither dH or my families have any downs.
She explained the cvs test and the materniti21 test This groups specific statistics for cvs were 1 in 300 for miscarriage and I was in no way comfortable with that number despite my 1 In 127 result being less. I got hysterical again ( no sleep, the stress, my uncle died last night to boot and having to think so fast on what we wanted to do, because I am 13 weeks 2 days so they said I needed to decide then and there to have cvs. Today) no pressure or anything, right. I felt like I was truly in the depths of hell having to decide this so quickly and under so much strain.
She left the room so dH and I could discuss what to do. The 1 in 300 scared us both. And we thought, the materniti21 is non invasive and has a 99.1 accuracy rate. The cvs has 99.9 accuracy. The stats with that cvs disturbed me terribly. We ultimately decided to do the materniti21 test, unfortunately it's a 10 day wait for the results. God give me strength because I don't know how I will make it. We just wanted to be as non invasive as possible to boot. And also, mentally emotionally me doing a cvs today, on no sleep and hours of crying, just not good.
If this test comes back positive, then I will have to get an amino, but at least it will give me time to research a doctor with the best stats , because theirs are 1 in 400 for miscarriage in amino. Sorry, stupid iPad won't let me type amino ...... Maybe theses stats are everywhere, but my gut told me don't do it.
The materniti21 test unfortunately cost us 475 dollars we had to pay today. Insurance doesn't cover it. Sucks. We are so broke between our car dying 2 weeks ago and having to add a carpayment to our budget after years of owning free and clear..it just all adds up. But it is what it is. Some insurances only have to pay 235 but our empire plan is a direct pos so we had to pay more. It's always something.
They gave me a quick scan, with the way I was hysterical yesterday and all last night and today I was afraid the baby died. I know I am NUTS...the heart was beating and the baby was in there, not moving...but in there alive. Then the dr came in, he sort of pressured us to do the c vs which got me hysterical again. He said " I've done 236 of these " we were just like "no, thank you". He got a little snooty about that materniti21 test saying its not conclusive. But if it comes back to be negative I will be very happy with those odds. I will worry regardless.
So now the wait begins. Thank you all for your support with this. Trying to think positive but it's just very very hard. If you pray, please pray for my little one...no downs. .thank you!
Teresa- I saw your post below and the responses. The ladies gave you great advice. Just keep telling yourself that your risk is only 1 in 127...those are not great odds. You'd get better odds in Vegas and we all know how that usually turns out I'm so happy that you are going to do the MaternT21 test. That will give you some peace of mind shortly. BTW..your other numbers look terrific!! Thinking of you and KNOWING that all will be fine. So sorry about your uncle. I know this must be a stressful time for you. Take care of yourself and try not to stress that much.
Oh Teresa, I wish I could hug you. My condolences on the loss of your Uncle. I also feel your pain in being in the waiting pattern for test results. The process of having a family is different for so many people but sometimes our destiny feels so uncertain that we break down. Those emotions are normal and what make us human. I am glad your DH is supporting you throught this process, you will not only survive it, but you will thrive. I have been praying for your little bundle of joy as long as I have been for active on this pink board, all the beautiful miracles discussed here gave me hope when mine was waning. Take time to relax when you can, cry when you need to and always remember you are a blessing to many
So sorry about your uncle. It's so hard to be hit with that when you're already dealing with something else. I too am really glad you opted for the Materni21 test- it seems like a great option in this case. I guess I would also just say, I know you've been through a whole lot (understatement) and so your nerves must be working overtime non-stop during this pregnancy. But, as you wait for your results, there are 2 concrete ways to look at things. You could choose to focus on the 1 in 127 babies in this situation that would be born with Down's. Or, you could choose to focus on the 126 healthy ones. I know it's hard to consciously make that choice, but I think it's worth striving for. After all, I can only begin to tell you how thrilled I would have been in my white board days if someone would have told me that I had a 99.2% chance of having a healthy baby in January! I know it's really hard and there's so much history that goes into where our mind automatically goes, but sometimes it's worth focusing on changing the automatic thoughts, since automatic often doesn't equal accurate. I have this problem myself so I can relate, but wouldn't be being honest if I didn't throw that out there... Wishing you well while you wait.
that as much as you possibly can, try to focus on the positive. I know how difficult it is when this uphill battle just keeps having to be fought, but it only gets tougher when we let the negative thoughts invade our minds for too long.
I am so sorry about the loss of your uncle. The emotions are overwhelming right now, I'm sure, and I'm sorry you are having to deal with this.
Although the Materniti21 test has a hefty price, it will bring you the peace of mind you need. The waiting for the results is never easy, but try to keep positive thoughts in your mind. The endless worrying is no good for you or your growing baby, and the worrying will not change anything. I'm the queen of worrying, so it's somewhat amusing that I'm telling you to try not to worry, and I don't expect you not to worry at all, but maybe try to focus more energy on keeping a positive mental attitude - PMA.
Like Erin, I am not a praying person either, but I am sending you only good and positive thoughts. Sending hugs too.
I love Belleruth Napartsek's guided imagery for situations like this. A hard as this is, you got to remain positive. You've got a lot going on and I'm sorry for that. Maybe some positive affirmations with deep breathing or prayer. I do some relaxation yoga that helps with big time stress.
I don't want you to regret being hysterical about risks your entire pregnancy. Until the test comes back, focus on that 99% chance of everything being normal.
I feel for you and I hope you are able to find some peace. I'm very sorry about your uncle. What a difficult time.
When I read your post yesterday I thought about a very moving anecdote in the introduction of a book by David Burns called Feeling Good. The author, a famous psychologist, worries his newborn son has brain damage and starts getting really stressed and upset and wigging out. Then a beautiful thing happens...so moving it still brings tears to my eyes just thinking about it. I wish I could do this story justice, but please consider buying or borrowing this book! It will help you so much, I promise. It is essentially about managing anxiety.
Even if you don't want to get the book, I suggest you consider devoting some of your time and energy to learning how to better manage stress and anxiety. It will improve your quality of life. Chances are, your baby will be perfectly healthy and normal. But you will have lots of stress nonetheless. Babies get high fevers. Kids fall out of trees and sometimes go to the hospital. You need to be able not lose it every single time something stressful happens.
I hope you don't take this post the wrong way. I posted about this a long time ago, as you might remember. I have been through the whole depression/anxiety cycle myself and I'm much calmer and happier now, despite 3 years of IF! That's how I know that you can also be happier and calmer, no matter what life throws at you. I can tell that you are really, really suffering and I feel for you.
Please feel free to email me if you like at antonialisa.felice at gmail.com if you would like me to suggest more resources. I REALLY would like to help you.
Hugs. I am so sorry about your Uncle. Peace to your family. I have to agree with Antonialisa. Give yourself permission to give your anxieties a chance to rest. Us IF ladies (and their men or partner) we spend so much time and worrying trying to get there that we then tend to worry about every statistic, scare, problem, oops, uh-oh that comes along with pregnancy. And it will come. And it will come when your beautiful happy healthy baby gets there too. And at each milestone or birthday after that. Try to give yourself some time to enjoy growing that baby. Make sound decisions and take care of yourself. Hugs again. I know it's not easy.
Im sorry I'm just not in the place to respond individually right now to each of you as I always like to do. Partly because I'm drained and partly because my laptop is being serviced and I'm awful on apple products, lol!!!!!
I am repeating to myself 100000000 times a day that all will be well.
Trying not to focus on what hasn't happened yet. That's easier said than done but I did sleep 15 hours yesterday and I feel more in a better place.
Going to fill each day with uplifting things to do and stay busy. Well I am cleaning out a closet today... Not so uplifting but I will be busy purging. Lol.
Thank you again for your kind words and good vibes! Very appreciated!
Teresa, I don't really have any info to add to what great advice you've already gotten. Just wanted to let u know I'm thinking of you and hope these next ten days go quickly and you hear good news. XOXO
i'm so sorry, teresa, you really have been through a lot! what a rough couple of days. it sounds like you have found a little comfort by speaking with the GC. i just had my appointment with a GC yesterday, too (that is insane that your OB had you meet a GC after doing some of these tests - that seems like a recipe for upset. having the guidance of the GC is supposed to come first and give you better context to interpret the results.). she really tried to have me focus on the upside of the statistics, and things look worse for me because i'm 43 (will be 44 at delivery). it seems like one needs a degree in statistics to really get a handle on what the numbers really mean! but even for my bleak looking odds of 1:38 for downs, 1:25 for any chromosomal problem, it still means there is a 96% chance my baby is healthy/normal. so, i'm taking my GCs advice and focusing on the 96% odds - sounds pretty good, right?!
i'm going to get the materniT21 test, too. but i'm behind you so i can't get the test until next week (it can't be done before 10wks) and then have another agonizing 2ww. i'll be thinking of you over these next two weeks and hope you will stay busy and the time will fly. i'm going to follow your lead and start cleaning my closets....
You are going to be in my thoughts and prayers. It is very very very hard to hear those numbers. I think we automatically think the worst. It's very hard not to and unless this has happened to you, you just cannot grasp how frightening it is to get the news you cant. But you are right, the odds are in our favor and that's what we have to focus on. This came as a huge shock and I'd be lying if I said I still don't have moments of sheer terror and panic. But also I have read hundreds and hundreds of women's stories who got even worse odds than us and they went on to have very healthy babies. There are LOTS of false positives!!! I pray that's the case for us both!!! The counselor called me this morning to see how I was doing. I had a few more questions so i was grateful for the chat She really helped me to focus on the favorable odds vs the small chance anything will be wrong. Still I can't help thinking back to my early betas..... they were very crazy high. At the time I remember being worried that it was a molar pregnancy but yesterday in discussion she told me high betas are actually a marker for ds. Trying to be positive
It's out of our hands now but still agonizing to wait. Keep me posted on how you're doing with this I am here for you if you need to vent, or I can give you my email too. I'm glad for the materniT21 test really because it's non invasive! Hoping for two negative results. One for each of us. Keep the faith!!
You said the GC stated that high betas are a marker for Down Syndrome. That statement is only true based on when the hCG is measured. In other words, high betas are relevant only when measured in that latter part of the 1st tri when you enter the window for doing a triple screen. Even then it's not matter of hitting a specific hCG number, (i.e. if you have a beta of 75,000 that means you have a marker for DS). There's some calculation done, specifically Multiples of Median (MoM)
I'm only making a point of clarifying this because I don't want ladies to think that if they get a "high" (which is a very subjective term) beta at 14DPO that that means they have a marker for Trisomy 21. If that were the case there would be plenty of women with need to worry.
To reiterate what everyone else has said, focus on the fact that there is a far greater chance that everything is perfect. You really do have good numbers. And do not make a correlation between your odds for Trisomy 21 and the odds for Trisomy 13 and 18. Again, allow yourself to focus on the positive.
Btw, I think it's great that you're doing this maternit21 test. But even if you didn't have that option, there's the SequentialScreen. This is what I did. The advantage is you can test as early as 10 weeks - although I waited until I believe it was 11W6D or something like on the advice of my Genzyme GC.
In talking with the GC yesterday, I happened to mention that at exactly 5 weeks, my beta was 8, 844 and at the time I was concerned about having a molar pregnancy. Her response to me was "hmmm, that's a soft marker for downs."
I had NO idea of this.
I didnt mean to scare anyone, however this is what I was told. So, what to think when a GC tells you this, right? Can you imagine how SICK I was hearing these words out of her mouth? Pretty worried, I can assure you!
I am really trying to focus on 99.2 that all will be okay.
to provide background on data that say that a beta hCG of 8k at 5 weeks is a soft marker for Trisomy 21. It certainly could be a concern for molar as you pointed out...which is an abnormal pregnancy. But in reading the Internet to the end, (and grilling my nurses after I had super fast doubling betas), I've never seen anything that says Trisomy 21 soft markers can be ascertained as early as FIVE weeks by testing beta hCG. If that was the case I would have gone crazy myself because I had fast doubling betas (like 24 hours!) and was also worried (without just cause) about having an abnormal embie.
If your beta hCG of 8k at 5 weeks is a soft marker for Trisomy 21, then is she factoring that into assessing your current results? If there is accuracy in her statement then wouldn't the fact that you already had a supposed soft marker be taken into account?
I really don't think that your 8k at 5 weeks was a soft marker for DS. I think it was a sign of a very strong and healthy pregnancy!!
I've never heard of such a thing!!! When I had the 8844 beta at 5 weeks, my RE said "normal"
Even in googling this (which I have, to death), I came across ONE message board where the woman who had a DS daughter said her beta was very high early on and that she got a + BFP 8DPO and the way she wrote "the signs were all there" I really didn't put much stock in. It's not scientific data, nor could I find any to back up what she said.
I can't help but wonder why she would say this. I admit I still don't understand too much about the numbers and how they reach them. She said my MoM was 1.5 and the Papp-A was 0.52, Nuchal measurement 1.1 (which was fine) and that with my age...high risk.
I am going to keep focusing on thinking positive. I am thinking about what you said, my measurement was really good, the baby looks good, the nasal bone is there....saying my prayers to St Gerard because I am a prayer and I do believe in the power of prayer!
Ask for the paper. Always ask for the research paper. If they can't produce one, ignore what they say. I bet there was some statistically significant result showing that moms of ds babies tended to have high early betas, but that doesn't mean at all that women who have high betas are at a greater risk for DS. It doesn't go both ways in statistics.
Also remember that the vast majority of pg women don't get blood tests at all in the first 8 wk (I didn't with my first), let alone that early or multiple times.
I am so sorry that you're dealing with this, but I agree with the other posters that, logically speaking, your risk is very small.
I wasn't aware of the impact of maternal age on how they calculate the Down's risk. It looks like for a 40 year old, it's 1:85, but what do they factor in to result in improved odds? I just mentally thought through all of the women I know who have delivered at 40 or slightly older, and thankfully, all of their babies are fine despite the fact that they started with the same odds purely because of age.
Anyway, the point of my post is really to say that I hope you get only better and better news from this point forward. I am sure you will.
oh Teresa I'm so sorry - here is some hope for you
July 13 2012, 2:07 PM
First of all, I am SO sorry to hear you are going through this - I know how terrifying it is. Here's my story, I'm hoping it will offer you some comfort. I finally got pg with my first IVF in October of 2006 when I was 35. That December we did the first trimester bloodwork and nuchal test and were hit with some horrible news: 1 in 3 chance of chromosomal abnormalities. We met with a genetic counselor and the news was grim. After years of trying to get pregnant, I did not know what to do. We cried together a lot. I had a good friend at the time who was a nurse and she had worked for a perinatologist here in Seattle who is apparently one of the best in the country. He's been doing CVS procedures for 30 years or something and his numbers were great - 1 miscarriage in 1400. So we went ahead with the CVS. We had no idea what we would do if it turned out there were abnormalities but we needed to know. If it turned out to have severe abnormalities which meant it would not survive to birth or for long after, I needed to know as soon as possible in order to make a tough decision. It was so depressing - we had to schedule the test for two days after Christmas. Needless to say, worst Christmas ever. Had the test, paid an extra $3000 to get the prelim. results after 24 hours. And guess what? My sweet little boy was chromosomally normal. We still had a high risk of hear defects so we had to wait until 21 weeks to do a fetal echocardiogram but his heart was fine.
When they give you the odds numbers, they are terrifying. You are probably not a mathematician so it's hard to get your brain around the numbers but what we later realized was that even when you have a 1:3 chance of issues, there's still a 70% chance that your child is fine. Your odds are better than ours were - MUCH better.
Sarah, thank you for sharing your experience with me. It helps to hear from someone who has lived through this and with worse odds but who had a great outcome (so happy for you and your story gives me hope). It's really tough. Everyone hopes for the best possible odds when they go through this test, and while there are much worse odds than 1 in 127 (like yours), noone goes into the test hoping to hear 1 in 127. As the GC said "it isn't a glowing report, we would have liked it to be much higher" Now that I understand though, (math was never my forte) that there is a 99.2% chance that everything will be fine, I feel a little better, though I didn't put on my cheerleading uniform and start doing cartwheels, lol.
It's hard not to ask "what if our baby is the .8%" If you don't mind, how did you get through that part of it? The waiting. I'm really trying to remain calm and hopeful. My mind still goes to all the "what if's" ... but it's happening much less than it was 2 days ago when we got the news. I know, somehow we will handle whatever the outcome will be. When I freak out, I try to remember that.
You are really lucky to have found a Dr to do the CVS with such great stats, 1 in 1400. I have to say, had we been given those odds, I would have probably gone for it that day. It would have been great to find out the results faster than having to wait. But the 1 in 300 was too scary than waiting out the 10 days for the results. The dr, since I was very upset, was giving me a little heat for not doing the CVS that day but my gut told me don't with those odds. I have no regrets.
My new mantra is "I'm not going to think about anything bad happening for today" It's a learned behavior lol, but I'm trying to be mindful of not focusing on what hasn't happened yet. I'm keeping busy and DH scheduled a prenatal massage for next week, which I'm really looking forward to. Also, my insurance company has a GREAT program for pregnant women that I signed up for. They sent me some great things in the mail, including a huge book "your pregnancy week by week" and they have a 24 hour hotline and I was able to get some support there. It all helps keep me calm.
Thank you so much for taking the time to write and give me hope. And thanks for really getting my concerns. You can't fully understand unless you've been there and you really helped me! Have a good weekend~
What a great number that is. In response to your question about how we got through it, lord it is brutal as you know. The only people we had even told we were pregnant were my dad and my best friend, and we had both of them praying for us. I think I always knew my boy was fine. I never had that awful feeling about it - I was very calm about it, especially once I met the perinatologist who was this big, 60-yr-old, quiet, old-school doctor who didn't say much but just had this air of confidence. I felt so safe with him, like he was a dad to me and he was going to make sure I was fine and my baby was fine. I had a very strong connection with the baby growing in me - I felt from the moment I found out I was pregnant that it was us against the world. I talked to him all the time and he had this calm energy about him so I let that be my guide. No matter what, we were going to get each other through it. I told him if he wasn't meant to be in this world that I understood and we would be together at some point. My poor DH - of course he wanted to take care of me but he himself was falling apart too.
You were right to not do the CVS with the numbers you were given - I would have done the exact same thing you did.
Hang in there - you're doing great. Keep us posted (if you feel like it).