Answers to AFP Testing (PLEASE HELP)

D., first of all you are very young to have a down syndom baby, but it can happen. I worked in a lab for 7 years and saw a lot of tests come back positive, but when the baby was born he/she was perfect. My good friend just went through this exact senario, but she chose not to have an amnio done. When the baby was born he was perfect. So don't worry too much, especially if the ultrasound looked good.
Good luck and best wishes,
A.

1 in 79 translates to 1.3% risk. That means that there is a 98.7% chance that your baby is absolutely fine. This is simply a matter of looking at the glass as half full. My first daughter was 1 in 88. She's three now and perfect. I know it's a nerve-wracking time, but everything is going to be fine.

I was 35 when pregnant with my first and 37 with my second. I declined the tests both times to the shock and horror of the doctors and nurses. I did that for two reasons: one, they prefaced those tests the first time saying that I was "high risk" because of my age and if my child had downs or any other disorder I should know so I could make certain decisions, ie. abort if the child was sick. That was just plain offensive to me because for me I knew that whatever condition my baby was born, I would love that baby and believed that God had chosen my husband and I to be the parents for that child. So, instead I asked my doctor how the NICU staff was at the hospital I was going to deliver in. She said top notch, which is really what my concern would be: in the case of any special/ severe needs would the staff be qualified to handle it. So that gave me peace.

Also, those tests (and they say it in the pamphlets that they give you) have a huge percentage of false positives initially.
Knowing my personality, I did not want to deal with a false positive only to have it cleared later.

I am sure your baby is fine, and growing, and healthy! And even if something is not fine, God will give you the strength to love and care for that baby like no one else on this earth could.

Have a great delivery and enjoy motherhood :)

My sister's best friend went through this with her daughter and with her, all tests said she'd have downs but the mom couldn't not have her child so she proceeded and THE CHILD IS PERFECTLY FINE. No Downs. No nothing. So it doesn't necessarily mean anything.

I opted not to take any tests like this so I wouldn't stress before meeting my child and finding out then. You are probably great at meeting a challenge and a quick learner and you can always adapt if anything occurs at the time you know for sure when the baby is out. When you meet your baby, if anything is off, you can get the books and stuff then. In other words, stress out then. Relax now because relaxing is the best way to meet your baby's needs now. Anything can happen between now and then so give your baby the best chance to be perfect that you can give by relaxing, meditate, talk to your baby and imagine warmth and love and healing pouring from you to your baby. Breath deeply. Be in a place of loving, nurturing and caring. Just be there. That's what you can do now and that's what your baby needs regardless of whether he/she has downs or any other ailment or nothing at all.

And really, downs is not the end of the world. Don't be so afraid of it. I know this is easy for me to say when I have healthy children but I wish someone had said this to me about some other parenting stuff I freaked out about ... there are some terrific books about this very thing. If you still cannot relax ... get some of the books ... there's one that a mom wrote about her child having downs that is humorous as well as real. It kinda puts it all into perspective. You can and will handle whatever happens.

Dear D.,

Yes, I can help you and give you peace. You have a very special human being inside of you right this very moment. You will fall in love with this baby, just like you would with any baby that you would have. You and your husband and the rest of your extended family will be greatly enriched by the presence of this wondrous person.

You will be great parents for him or her, and she will live with you in peace and harmony. Downs Syndrome people do not have an adgenda like we so called normal people do. They are polite, kind, loving, and accepting of all our foibles and errors. They warm hearts and heal our stressed lives.

You were chosen to have this child for a reason, and this child will bring you many many days of happiness.

For several Christmas seasons I helped serve luncheon to about 100 handicapped people, both physically and mental problems as well as Downs Syndrome people. It was in a special program at a nearby college. I always came away from there walking on air - having been treated with kindness and courtesy and many loving thank yous and shy smiles. It was a lesson to me, and one that I needed to learn.

Relax, you are going to be visited by an angel.

Sincerely, C. N.

I know TONS of women who have a positive AFP test and everything comes out great. My doctor told me with my first daughter that she suggested (because I was 35) that we skip the AFP and go straight to the amnio. She said too many times people get false positives and then they stress out for weeks waiting for the amnio appointment and then the results. She said better for the baby to just skip the AFP all together. Everything is going to be just as God planned it. I'm sure your baby is healthy, especially because you are so young and if there is no history of downs in your family.... Update us when you find out!

1:79 risk means 78:79 will be negative. Just keep the faith that you'll be one of the 78!

There are two kinds of tests in the AFP world. One kind is "suggestive" That is what happened when you recieved the information that you might have a downs baby. The level two ultasound is even more "suggestive" that you baby is not downs. The amnio is "diognostic", in other words, in other words, the final reality of the situation. This is all data collection time and indeed stressful. As best as you can, you need to just sit with it and use the time to decide for yourself and your baby what you consider to be your own phylosophy of quality of life, spirituality and what you can take on in your life. If you would never, ever for any reason terminate a pregnancy, then let it go!!! Downs people are lovely and bring great joy to their families and to the community. There are breastfeeding issues and other child raising challenges, but they are not unsurmountable. On the other hand, if you just can't se yourself caring for a special needs human being, use this time to realize that you can let go of this pregnancy and get pregnant again. Then you will know what to do with the data that you will soon recieve. I know that this is all very difficult, but it is an opportunity to come face to face with your belief system and your strength. The level two ultrsound is reassuring, by the way.
I'm sending good thoughts your way.

M., Midwife

I just went through this. The doctors aren't disclosing all the statistics. False positives are the most common result. I was told my baby had a neural tube defect (either the brain or spinal cord didn't develop, potentially fatal). The ultrasound looked good and I had amnio almost 2 weeks ago. I got the call of my life on Thursday... everything is perfectly normal with my healthy baby boy!

Take a deep breath and try not to stress. A lot of times the AFP test is wrong. It's just looking for an elevated level of protein and can't diagnose anything. Unfortunately, many doctors aren't presenting it to the patients right. Grr on them!

If your baby does test positive for Down's, rest assured that these are the sweetest children in the world! It does take commitment, but I encourage you to not be afraid.

Just out of curiousity, are you in the SoCal area too? And if so, are you with Beaver Medical? That's my medical group and I hear they often scare their patients unnecessarily with the AFP results. Most other doctors in the area handle this a bit more professionally. Rest assured that the AFP is just a screening test and the amnio is the real deal. Most of the time, the results come back perfectly normal with no birth defects. :)

D.,
My huband and I had a possibility of having a baby with downs. When we found that out it was scary yet I didn't do the tests. If it does come out positive you obviously have your choices. However, this was my thought... I would love my baby no matter if he had down's or missing a foot. It was going to be my job to protect my baby and love him like only a mommy could. I educated myself on having a baby / child with downs. Also have you ever met a child with downs? They are the sweetest most loving human beings alive. My thoughts are with you. Just think positive. Your baby needs positive vibes right now.

M.

I went through the same thing with my son who is two today! It's pretty scary but the lady who explained it to me said these numbers are based on averages. Anyways stay positive I'm sure everything will be fine. I was 32 when I had mine and I freaked out too! LOL

From what I have been told the AFP is almost like a guesstamate. I was told that my son had spina bifida because of that test and he wa just fine. My doctor told me the test goes off your race and the things they find in your blood. So basically it just a list of things that COULD happen but not necessarily are going to happen. I wouldn't worry to much I personally trust the ultrasound a little more. One thing I did do was go and see a geneticists. If your insurance covers it it might give you some piece of mind. They will go over your family history and dads and go from there. I had one and she was the best doctor ever!!! I know it's hard not to worry but try. Even if something does happen that is your little baby and you will love the little one no matter what!! Good Luck!!

It is very common to get false positives with these tests if your dates are not right. Don't let yourself worry too much...you're probably just farther along than you thought.

My daughter is now 15 yrs old, but when I was pregnant w/ her, my AFP came back positive, too. I had ultrasounds every 4-6 weeks and they always showed a perfect little baby. It was frightening, but I kept my faith that my baby would be okay. She was!

I personally don't like the AFP test, the amnio will be more accurate. I am now 37 yrs old and just had my 2nd and last baby in Jan '07. I refused to take the AFP test and had the amnio done for peace of mind.

Stay positive - this is an important and exciting time in your life!

My mother just got back from a church retreat and she was telling me that she met two women in the group that said when they were pregnant the doctors told them that their babies were going to be born with downs. She said both babies are perfect. Nothing was wrong with them. My best advice, Pray! Have faith! You will love your baby regardless, remind yourself of that.

I'm so sorry to hear that. I didn't take the test because I knew I couldn't deal with it. Luckily for me everything was fine. I can tell you that the doctor told me the test is not fool proof and just because it was positive, didn't mean my bsby had downs. let's hope that test comes back quick. My prayers are with you.

Hi D. - Congratulations on your pregnancy! Although I didn't experience this, false positives do happen, and you still have a very good chance of having a healthy baby. Looks like you got a lot of great advice here. The only other thing I would add that for anyone that wants to give their baby the best chances for a healthy birth, eat as much whole food nutrition as possible. The phtyo chemicals(plant nutrients), antioxidants, and enzymes combat the damaged cells in the body and even help support DNA repair. If you can eat 9-13 raw servings of fruits and vegetables every day that will help. If you want to be sure you're getting at least that and more then eat Juice Plus capsules. I distribute it, but I feel so strongly about their ability to support good health, I don't care who you get them from, just consider taking them every day during your pregnancy and beyond. It's just fruits and vegetables in a capsule form so it can't hurt you and can only help. If you want to hear what the doctors say about it's benefits during pregnancy call this free number: 800-942-1260 and select options 2 and 2. I wish you the best outcome! http://www.juiceplus.com/+cc42230.

Don't the numbers mean that you have a 78 in 79 chance of having a perfectly healthy baby? Isn't that 78 times more likely than having a baby with downs?

This is the problem with modern testing - look at all the stress and heartache you are going through! At this important time, your baby needs your love and for you to try to feel as good and stress-free as you can.

Best wishes to you both.

Hi D., I too had a positive AFP for downs, I had a 1 in 60 chance and everything turned out fine. My sister in law had the same experience, try not to worry I think everything will be fine. S.

The best thing in your situation is to pray, because only God can give you piece that is beyond human understanding. When I was pregnant, I was told at 19 weeks that my baby might have Triosomy 18, so I was refered to the specialist. I had to wait for the appointment for a week. Only prayer and trust that my life and the life of my baby is in God's hands helped me live in peace during that week. At the end results came negative, and I have beautiful, helthy baby boy which is 3 months old now.
God Bless you, your family and your baby!!!!

Hi D.,

We had almost exactly the same situation you describe: very healthy Nuchal Translucency screening followed by an AFP showing a 1:39 chance of having a baby with Down Syndrome. Although AFP false positives are quite common, we did move forward with an amnio, and ultimately we had a very healthy baby boy!

Please don't stress out about the amnio - chances are everything is fine. Also, in case it should come up again: there is a way (for an extra fee) you can rush your amnio results in a matter of days, rather than weeks.

Good luck!
~ L.

D. I hope everthing is ok with your baby. I actually work with children that have downs and they are the sweetest most loving children. Just know that God has a plan for you and he knows what you can handle in life! My thoughts and prayers are with you at this difficult time!

Hi D.,

I just read your request and I had to respond. My heart goes out to you! I went through the same thing this time last year. I know it is easier said than done but keep your head up!! After reading your request all of those emotions came rushing back to me and I just had to respond. I know what you're going through. But keep in mind the stats are in your favor. And if it helps at all I've heard and talked to other women that have had to go through the same thing and all of their children were born completely healthy including mine. Remember many different factors can and do effect the results of the AFP test. Please take care of yourself and I will keep you and your baby in my prayers.

R.

Hi, D.. I'm going to go a little against the grain here, in hopes of helping you to see it another way and put your mind at ease. While I agree with the "It's not as likely as you may have been told" advice, I believe that EVERY child, challenges or not, is PERFECT. I've worked with Down Syndrome children and met plenty of DS adults. There are no more beautiful people in this world than those who have such idealism and innocence - and senses of humor! These people are the REAL teachers. I understand that the lifetime commitment to a "child" isn't what anyone dreams of when they conceive, and for that, you have my sympathy if it comes to pass. Dale Evans Rogers wrote a book, a loooong time ago, called "Angel Unaware." I read it when I was a kid (odd, I know). There are probably so many newer books on the subject now, but I remember it enlightening me to the perfectness and Divine INTENTION of every human being. So, if you are entrusted with a DS baby, consider yourself "chosen" to be a brave messenger of what you're intended to learn. Still blessed with the job of parenting, just with an unexpected twist.

Take care of yourselves,
J. Smithson
Loving Hands Learn 'n' Play
http://www.lhlearnandplay.com

I was tested positive on both my daughters(at ages 29 and 32). I did amnio twice and my girls are just fine.
It turns out that AFP test is not a good measure tool. It has if not lower than 30% accurate rate. My friends who are over 35 got positive simply ignore it and have healthy babies. Don't worry about it.(I was as nervous as you are at the first time.)
If the ultrasound looks great, it's great.

hello D.! when i was pregnant with my daughter, my AFP test was positive as well. i was very freaked out, but the nurse told me that sometimes the AFP tests come out positive and nothing could be wrong with the child. i had the amnio done and found out that my daughter was fine and she did not have downs. i have to admit that i was nervous until she was born...but she turned out to be a very healthy baby! i would say that you really have nothing to worry about. just relax and try not to be stressed. regardless of the result, you have a wonderful being growing inside of you! that is truely amazing in itself. :) let me know how everything turns out!

Oh my gosh, same exact results that I got. We went through the ultrasounds, and amino just like you. However, before the amnio I had to go though genetic counseling. The good news is that everything was normal. I hope this helps. I know that everyone kept telling me it was going to be fine and I was still a wreck until I got those results. I went to a lot of yoga classes while waiting they did seem to take my mind off it at least until the class was over. Try to get involved in something that will take your mind off it (I know it is so easy for me to say . .. but it will help). You will get through this. Play card games on the computer, or read a book, anything to get your mind of it. Please let me know how it turns out. Also, I wasn't told this til after the amnio results but the test is all numbers, it is your date of birth, and a bunch of other numbers that they put together in a mathematical formula to come up with 1 in 79. The dr told me about 2 weeks after the amino came back fine that they put the wrong birthday in for me and the test was actually a 1 in 170 chance. So just with a different birthday the odds decreased a ton. Keep smiling and I will keep you in my prayers.

COngratulations!! I just wanna say every chld is a blessing no matter what! I to had the AFP test with my first son. Our test came back really high, so they told us he was likely to be born with Spina Bifida, or a hole in his skull? I cried myself to sleep almost every night. I was soo worried, we high the upgraded ultrasound, they said it looked normal. And he came out perfect! I also had two friends who just had babies this past year, their tests came back positive for DOwn. They both did the ultrasounds, and 1 had the AMino.One of my friends her daughter had calcium deposits on her heart which made her chances higher?? BUt u know what both the girls were born perfect no problems.

So maybe the test is wrong with you as well. Im sure u have plenty of people around who love u and will be there for you. Good Luck! Best wishes and once again, Congratulations.!

I've had 2 amnio's with my 2 pregnancies. This is what I chose, and what my OB recommended as being more accurate. I'm very glad I did this. Do not fret, I know it's hard. But all will be okay. Pray, have faith... lots of people here care. I was a nervous wreck waiting for my results too... and it will be fine. Any baby, is a blessing. Whatever you feel, or choose... take comfort in it. It is great that you are pregnant... that in itself is divine & special. Take care of yourself, pamper yourself, and enjoy your pregnancy and your growing baby. It is a wonderful experience. Hugs to you... and take care....you will find great help here.
~Susan
www.cafepress.com/littlegoogoo