I am 25, and pregnant with my second child. I got a call last night from my midwife telling me that the results of this test were positive for down syndrome. While I do have a half brother who has a non genetic type of down syndrome, his is the only case in either of my husband and I's family history. While it would not be terrible to have a child born with down syndrome, I am not exactly hoping to. My half brother has even enhanced my family's life in many ways, and I am truly grateful to be a part of his life. Still, because his type of down syndrome is non genetic ( I forget the medical term for this ) I never thought I would be given positive results. After doing some research about this screening test, I have learned that there tend to be a lot of false positives. I have been told that the only true way to know actual results is to have an amnio.,but this is scary to me, and probably more so to my husband. Regardless if this baby does have down syndrome, I do not want to risk losing this baby. If anyone has any advice or experience with this, please let me know. I am scheduled to meet with a genetic counselor in two days, but am stressing in the mean time.
So, we went to the genetic counselor today, and were told our chances were 1/173 of having a child with down syndrome. This was really good news, considering this meant a less than one percent chance. We opted for the level two ultrasound instead of the amnio. After getting the ultrasound, we showed no markers what so ever for down syndrome. While we would keep the baby regardless, the extra doctors and therapists is not something we will likely have to worry about. Yeah! Thank you all for your wonderful advice and support.
Is it just positive for having a high risk? I had that too for my first and didn't do the test for my second. If it makes you feel less worried to know then you could get the amnio. I did not want he amnio but had a level 2 ultrasound, which still isn't the best way to tell but it was fine for us and she came out normal. There is a lot of false positives for the screening, it's hard to know why they do it automatically.
I am seldom in favor of this sort of intervention. Before you get yet another test, that could endanger your child, (did you know that often times babies punch at the amnio-needle?) please ask yourself what you will do with the information you'll get? Will you abort the baby if you find out that the child is down syndrome? What sort of preparation and research can you possibly do during your pregnancy that can't wait until after the birth? These tests are often false positives, leaving mother stressed and uncertain throughout her pregnancy, only to find a perfectly healthy, normal baby after the birth.
My midwives told me that there are no guarantees in life, and once you choose to have a baby, you get whatever you're dealt. There is nothing you can do to change the baby, even with a hundred more tests. Perhaps you could meditate on loving your child and yourself, and spend less time thinking about tests that will not make any difference what-so-ever.
Good luck.
If you are planning on keeping the Baby regardless of the dx.. I wouldn't do an amino unless they think they can help the baby in utero. I thought it was risky and not worth more worry. I didn't do one and I'm 40 yrs old.. When I planned on getting preg. It was for whatever God gave me;-)
Hope you get lots of other answers that help this hard decision.
L
I agree with Camille about asking yourself what you will do different if you do the test. Will you abort the child? If you do than you need to do the test. If you would keep the child than, just like the sex of the child, you could wait until the birth to see what's going to be. I know if might be hard to have to wait, but the risk might not be worth the early knowledge.
Hi K.,
Easier said than done, but try not to stress. It sounds like your midwife may not have explained the test very well to you. It is not a diagnostic test, meaning it doesn't test for down syndrome. It is just a tool for identifying risk. It detected something that indicates that you may be more likely to be carrying a baby with down syndrome. These tests are about 60% accurate, which means that about 40% of the time they give a false positive or a false negative (your test could come back normal and you could still have a down syndrome child). The accuracy is not good. So what it does is push you into more tests, like an amnio, or otherwise causes a lot of worry.
I would sit down with your husband and have a heart to heart. Do you have to know now? Would it change your actions (for instance would you terminate?) or would it just give you peace of mind or preparation time (depending on the result). How important is it to you to know? Or can you figure out what you would do if your baby was born with down syndrome and go along with your pregnancy knowing that your baby is probably fine, but might have downs? It's true for all of us really, there are no guarantees. Knowing your answers to these things can help you decide if you want to do the amnio or not.
Going into the future it's a good idea to think through any of these tests and procedures before you do them, so you know if you really want the results or not. If it doesn't really tell you anything and you wouldn't do anything differently with different results then the test is only good for stress and not much else! Best of wishes to you.
Dear K.,
Please do not bother seeing the Genetic Counselor. My husband and I were led to believe that the GC would help us to better prepare for the possibility of having a Downs child, but it was nothing like that at all - it only made things worse.
Basically, when you go to the GC, they ask you about all of your family medical history, then they make a chart and show you all of the things for which your baby may be at risk. Nice, huh? They take a worry and make it more worrisome. Then they'll "advise" you about the timing of an abortion. We told her an abortion was not an option, and at that point she said, "I don't know what we can do to help you - good luck!" Seriously, a GC is basically a person who tells you what all could go "wrong" with your baby and then tries to make you feel "good" about the option of terminating the baby because of these uncertain risks.
That being said, I went through the same situation that you have. My baby was shown to be 13x more at risk for Downs and they told me this was "high risk" because I had a 1 in 115 chance of Downs. She was born absolutely fine, but it made me worry and made me VERY sad at first.
We decided against the amnio, even though I knew I'd probably rest better knowing for sure, because we did not want to do ANYTHING to risk the life of our baby. Since amnio carries a risk of miscarriage, we didn't wanna do it. My best advice, since you seem set on having your child no matter what might be "wrong" (according to society) with it, is to do your very best to love her/him and to accept them no matter what, and to hopefully reach peace about your decision, no matter what it is.
I'm sorry this is blunt and hurried - I am pumping at the same time and on my way out the door in a few. I do hope it helps tho, and please feel free to private message me if you have anymore questions or would like a more in-depth idea of what we went through.
Pax,
A.
K.,
I had false positives with two of my pregnancies. You are right, most positives are false positives. I personally chose to do amnios. If you do chose an amnio, specifically request the doctor most experienced with the procedure. Experience is nearly everything so demand the Dr with the most experience. I wanted to be able to relax and enjoy my pregnancies OR use the time to become educated and seek out resources for the disability. The amnio results allowed me to relax because they were both negative for Downs. Best wishes to you.
I had the AFP test show high risk for down's on both of my pregnancies. My OB said he had never seen a person test high twice and not have a down's baby. Neither of my children have it. I did the genetic counseling both times. Most of the time its not genetic, just a random thing that happens. I chose not to do the amnio both times because I knew, and my husband, that if it was fine or not, we could not live with ourselves knowing that we caused the death. Amnios have a percentage of causing termination of the baby. It can happen. Its rare, but I couldn't take the chance.
The AFP test is not a yes or no test. Its a percentage chance based on a lot of numbers. So, it isn't going to say for sure. That is why they say do an amnio, because that can give you a 99% accurate answer.
I know this is stressful. I had a tough time with both pregnancies. Didn't do an amnio. Didn't know until the births if they had it or not!
My sister got a positive test too, and her baby ended up being fine. The problem is that the window for that test is soooo small. If they have your due date wrong, then the test is not accurate.
These tests have scared lots of parents of very normal kids... & I wouldn't risk am amnio! Actually, I was very acared of this too but I had a few more ultrasounds & they could tell that the baby looked normal. Please just go have another ultrasound instead. Close your eyes & what is your first reaction... sounds too simple, but you will know what to do.
