Positive Quad Screen Result And Scared

53 Replies
lis ann - March 31

I called the doctor's office today, taking for granted that my quad screen would return as "OK." I was floored when the nurse told me the results came back as 1 in 60 that our baby has DS. I am a thirty-five year old Mom of two. (just turned 35 on 12/31) I know the risk factors are greater for older Mom's but, I was not expecting the results I heard today. My husband and I went immediately to the doctor's office for a consultation as to what is next. The obgyn has 25 years experience and has seen thousands of cases. He was supportive in answering our questions. I have an amnio scheduled for next week. I have been crying all day, not about the test itself but, ultimately the results it will reveal. Non-sugar-coated advice and honesty appreciated please.

 

christa0120 - March 31

no words of wisdom with no sugar coating...just wishing you the strength you'll need to get through these next few weeks. I hope all turns out well for you. Please keep us posted

 

Debi - March 31

Hi lis ann, take heart in knowing that these screens are very likely to be wrong. I was 34 when I conceived in May (2005) and 35 when I delivered 2-8-06. Also a mother of 3, I took for granted too that my results would be fine, until I got the phone call that the doctor needed to see me in the office ASAP. Well, knowing that the quad screen was the only test that was pending, I knew it was bad. He told me that my test came back as my baby having a 1:47 chance of having Trisomy 18, which is really bad. If the baby should survive the pregnancy they will most likely die within hours or days of birth. Having buried a son, 5 years ago, when he was only 5 months old (born big, beautiful and healthy-full term) there was no way I could do it again, which is what I told my doctor and even he told me that they would recommend terminating the pregnancy should the amnio come back positive. I am pro-choice, although it's never been my choice, I do believe especially in medical situations or rape it is appropriate- but not to get into all that, just want you to know that I would have terminated , even after having a m/c just prior to this pregnancy. We met with a genetic counseler and had the amnio done right away. Within 2 days they can give you the preliminary results, which are like 95% accurate to what the final results will be. The amnio is not a big deal, especially since you have had children before so it should just be a little uncomfortable, you already know about being poked and proded. An interesting fact that I learned about the quad screen is that if you are overwieght it tends to come back with a higher instance of "false positives". Anyway, my results were fine, I found out that we were having our 3rd girl and she was good, the best news. She is now 7 weeks old. I have to tell you that finding out that my results were positive for the T18 rather then T21 (DS) my decision to terminate was much easier. With T18, it is very black and white, the baby will die if not miscarried before birth. With DS for me it would have been a much harder decision. I don't know what you and your husband would plan to do (I don't want to presume that you have thought of termination- sorry if I offended you) But I would have had to think about my other girls and wonder if it was fair to them that they would have to take on the responsability once my husband and I are gone. I wish you luck and next week I hope that you are back on here saying that everything is great. Take care, if you need to talk, we're here.(fingers crossed)

 

lis ann - April 1

Debi, It is an early Saturday morning and I cannot sleep. I have been checking the posts, hoping for some insightful perspectives on positive quad screen results that others have been faced with. Thank you for sharing your experience with me. My heart breaks for you, having lost your son. Until I had children of my own, I never understood the level of protection, loyalty, and devotion a parent has for a child. Up until yesterday, I took for granted uneventful pregnancies, normal test results, and healthy babies. Fear is my biggest challenge right now. I am petrified about facing up to making a very grave decision if the amnio confirms the quad screen. I have always been pro choice, everyone faces different circ_mstances in their life. I, too, now face an unexpected circ_mstance. Therefore, termination is an option that my husband and I have discussed. I am 35 and my husband is 43. We look at things in terms of 25/30 years from now... what kind of responsibility does that mean for us and potentially others? Certain people in our life have laid on feelings of shame and guilt. This baby is a gift from God and you take it, no matter what. I think to myself... that is real easy for them to say... with healthy children of their own who will one day, grow to be self-sufficient and independent. Others will judge and I feel very weak in having to live with that stigma. I'm afraid of those whispers that will linger for years... why? Before, I go... can you please answer some specifics for me? The doctor said my results for DS were 1 in 60. Does that mean I don't have a risk for T18? Or, is it all included as one diagnosis? After the amnio... did you take time off of work to rest? Do you think the quad screen is even more efficient and reliable than the triple screen? That being said, the results of the quad screen are more likely to be true than the "older" triple screen tests? I also wanted to say that my height and weight are appropriate for my age, etc. I am 5 feet 6 inches for height and my pre-pregnancy weight was 137 pounds. Obesity is not a factor in my test results. Thanks, Debi. Give your girls a big hug.

 

lovemy3 - April 1

hi, I don't know all the details of my sister-in-laws sitution but I do know she was 34 and her screen came back 1/100 for that as well. She had the amnio and everything was perfect. She has a beautiful 10 month old boy. I had also read and been told about all the false positives and also the obesity factor which i have and chose not to even take the test with all 3 of my pregnancies due to the false positives and the worry that comes with it. Chances are all will be fine, try not too worry ( i know it must be hard) keep us posted.

 

Debi - April 1

lis ann, I believe that each risk is seperate, so if it shows a risk of DS and not T18, then I think that you are okay there. My doctor told me that even though my results came back with a 1:47 chance there was still a more then 95% chance that the baby would be healthy. I don't know how they come up with the precentages (math is not my thing) but if you think about being in a room with 60 other women, only one will have a baby with DS. As far as the quad screen itself, I don't know if it is more "reliable" then the triple screen, when I first got my results back I was on the second trimester site and there were alot of women that had "false positives" to both. I don't think that I will have anymore babies, but if I do, I will forgo the quad screen and go straight for the amnio, that is how strongly I feel about it now. As far as what others will think of you, I understand what you are saying about the comments that they will make, but hell, they are not the ones that have to live with the decision or the responsibility that comes with it. It's so easy for others to judge but unless they are in your shoes they have no business doing it. You and your husband have to do what is right for you and your family, no one else is going to take care of it for you, so tell them to be quiet. I truely believe that when you have the amnio results come in, everything will be fine. The wait is the worst part, I had my test on a Thursday and took Friday off and was off the weekend, when I went back to work on Monday I took it a little easy. I work in a hospital and deal with patients (moving them and pulling them onto stretchers etc...) so even being pregnant I wasn't doing a whole lot of that too much anymore anyway. Just be careful about picking up your other kids for about a week. Try to relax (I know easier said then done) if you need to talk, I'm here. Big hugs to you and your family too!!

 

angelight64 - April 1

I was pregnant at the age of 39. I was scared and felt I had no option but to choose to opt out of my pregnancy. There is not one day that pa__ses me by that I feel that I did the wrong thing. I regret the decission that I made. I prayed about the decission, I pray that you will choose to keep your faith, and not let fear control your decission. Life is not easy on any of us. But to live with regret is harder. Keep your chin up and follow your heart. I only pray that I can one day forgive myself for the mistake I made 3 years ago.

 

lis ann - April 1

angelight64, Did you have a confirmed amnio for a baby with complications? Otheriwse, what prompted the "opting out?"

 

K - April 1

The quad screen is pretty much worthless for people in their 30s. If you research the test you will find there are tons of false positives, so you should try not to worry too much. Also at your age, the test would not be expected to come back normal. I was 38 when I got pregnant. My doctor advised against even taking the Quad screen because she said that for people 35 and over it will not come back normal and only causes unecessary worry, as most of her patients over age 35 have perfectly normal healthy babies. She recommended we go for a level II ultrasound instead, which we did. She said she would not recommend an amnio unless something showed up on the ultrasound. We had level II ultrasounds at 17 weeks and 30 weeks which both showed everything was fine. 6 weeks ago at 39 years old, I gave birth to a healthy baby girl. There is a good chance your baby is just fine!

 

lis ann - April 1

K, Congratulations on the birth of a healthy baby girl! I am sure you are very busy meeting her needs but, I thank you for taking time to respond to my post. I live in a small town where technology lags behind other bigger areas in a somewhat, scary way! The hospital recently added the quad screen and that, for our area is a big deal. The ultrasound equipment has been the same for at least 8 years. (My niece is 8 and the machine is the same!) Therefore, I was not even offered a Level II ultrasound. The practice (doctor) jumps right to the amnio for lack of anything else to offer. I've been on the computer for hours and hours, reading articles and various posts. When I try to comfort myself... I picture 60 women in a room. One will have a Downs baby. I know 59 will not. But, someone will... what if I am that someone? Rest when you can with your new baby girl. Thanks for your positive support.

 

L - April 1

Lis Ann, I know you are terrified, but try to think positive. First, your chances are probably not 1 in 60 because the test has such a high rate of false positives. Second, even if that was your chance, that is only a 1.6 percent chance of anything being wrong, which means there is over a 98% chance that things are fine. Good luck with the amnio and keep us posted.

 

lis ann - April 2

To all who have responded, I really appreciate the time you took to read about my situation and post a response. I actually had a good night of sleep and feel rested this morning as opposed to yesterday. I do admit though, thoughts about the quad results, the amnio, and ultimately the confirmation (either way) regarding the DS consume me. Living in the fast-paced and instant society that we do... I'm uneasy with the wait time. I know I need to go about my daily routine but, it sure weighs heavily on my mind. Thanks girls and I'll post again soon.

 

Debi - April 4

lis ann, good luck with the amnio this week, make sure that you ask them about the FISH results, it's the preliminary results that should be back within 48 hours. I'll be thinking about you and sending positive energy your way!

 

lovemy3 - April 4

Good luck as well? Do all hospitals have the availablity to give you FISH results Debi?

 

MellyMel - April 4

LIS ANN: No offense to you one bit, but this is why hubby and I are NOT having this blood work done. You, like a zillion other woman will probably have a healthy baby!! This test is so not necessary and causes unneeded stress for pregnant woman. This is why they have amnio's. If a woman really wants to know, get your amnio. The blood test has so many high positives that it's a wonder why on earth they do them!!! I feel so bad for you, because I am sure your baby will be just beautiful and healthy and you will have worried the next months over this. Stay positive like everyone else is saying. Chances are great that your baby will be born healthy! Take care and you are in my thoughts.. Melly xo

 

Debi - April 4

lovemy3, as far as I know the amnio's get set out to a genetics lab which I a__sume that they would have the FISH results, having insurance pay for it may be another story. I got lucky and my insurance covered it.

 

ThePezChick - April 4

Remember that a 1 in 60 chance of have a child with DS means a 59 chance in 60 that you won't. I'm a special ed. teacher and have been for 16 years. I have all those tests coming up before long and to be honest, if I HAD to have a child with a disability I would choose one with DS. They're awesome kids! My husband and I have decided to not terminate the pregnancy if our child does have a disability (not that I opposed termination), so I think finding out early would help with the adjustment and acceptance. One of my favorite sayings is "Worrying is paying a debt before it's due". Remember, this isn't a debt that's due yet. Also, seeing the concerns you have about later in life... There are great resources out there for children/adults with DS. They typically live extremely productive lives... working, living as adults insupervised settings (outside the parents' home), etc. I've also heard of false positives from my sister, although I don't know of anyone personally. Good vibes sent your way for a healthy child!

 

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