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Readers Respond: How did you feel about your AFP test?

Responses: 166

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This is so difficult and scary for me

Today my OB office called, I am just about 20 weeks pregnant and my AFP MoM is 2.67 screening positive for a Neural Tube defect. We have a 2.5 year old daughter, I am 32 years old, a Pediatric RN, and was called while at work...today. I am so nervous...there are varying levels of severity and so much is unknown until we can see the specialist for a 3-D US and genetic counseling, I do not have any of the risk factors. With my medical knowledge, having given care for children with NTDs , and listened to the parents as they go thru the emotions... I am so worried about the worst possibilities, how my husband and I can make the right decisions for us if needed. I am just praying that either everything will be fine or that we can find strength. Us and visit with the specialist is Thursday. I wonder if there is a genetic connection and wondering if the gene(s) associated with NTD are maternal or paternal. We have no history or knowledge of my husband's fathers side.
—Guest Chirs

I don't know if I should be stressed...

I'm 44 and pregnant with my 3rd child. At 12 weeks we had the ultrasound which showed everything looked good, could see the nose and neck thickness was fine. I had the blood test and that came back abnormal, they said based on my age, I had a 1/84 chance of having a baby with downs. I don't want to do the amino, we'll take whatever God gives us.
—Guest Angela

I wish I hadnt taken the test

I am 17 weeks and my AFP showed high risk....and my heart broke. I don't even know, how or whether I should tell my husband because he will completely freak out. But, I know, in my heart, if GOD has given life to this baby, there is a good reason. I will welcome the baby with or without any syndromes and stop all further testing. I am blessed and will stay positive through my pregnancy despite the test. I think today's medicine just complicate matters and create unnecessary stress.
—Guest Jaz

AFP Positive result

Had blood test done at 12 weeks then second phase at 16 weeks.. I was already scheduled to see a perinatologist since I am 39 and this is my 4th child. Ive had three healthy boys. I got the call Monday that my results were abnormal showing 1 in 24 chance of DS..My appt for the stage two U/S was Thursday ( today) I had the U/S and and amnio down and wont know the results for 10-14 days! I'm in such agony and don't know what to do. This baby is suppose to be a girl. I just pray I have made the right decision and she is healthy. I really needed to know so I can prepare myself and my other children for her arrival. I will repost with results when I get them. I do find some comfort in all the comments I read but still have a fear. The medical profession is NOT perfect and we should always ask questions and research everything! Everyone is different and so is every pregnancy!
—Guest Kimberly

Take the test

I initially didn't want to do this blood test because like everyone else didn't want the extra worry. I thought everything was fine. I ended up taking the test in the end. It showed I had a 1 in 43 chance of my baby having Trisomy 18. I still didn't believe anything was wrong. At 22 weeks I had am ultrasound. She saw that my baby had too much fluid on the brain. Needless to say I ended up getting an amino done. She had Trisomy 18. I was heartbroken. I would recommend everyone to get this test. I was prepared for when she was born stillborn. I carried her for 37 weeks and wouldn't change a thing.
—Guest kim

Even docs are uninformed!

The risk ratio is based primarily upon age, and the blood results only create a multiple to be applied to that test. So while my age-only risk (at 41) is 1/68, the triple screen result lowered that risk by a factor of 2 to 1/131. Also the strongest classic downs indicator in the triple screen is a low AFP and mine was high. Nonetheless my doc just reads the automated summary at the bottom of the lab report - "you have heightened risk for a Down baby and should seek genetic counseling immediately" and pressures me for an amnio.
—Guest Leah

Sick with fear

Just had my quad screening at 15 weeks and it's abnormal. 1 in 10 chance of Down Syndrome. I took this test with both my other children and it was always neg. Kinda wish I hadn't taken if now. It takes the joy out of being pregnant. My ultrasound is 3 weeks away so I have to 3 weeks until I get a little more info and the rest of my pregnancy to worry.
—Guest Tracy

Great News!

Thank G-d, my geneticist just called to give me wonderful news, my baby girl is ok!! My AFP had come up positive 1/100 for Down. Against what I initially had wanted, I had an amnio because the uncertainty was too stressing. This will be, G-d willing, our first child and am so grateful to G-d for this result. Since this is my first pregnancy I had no idea what taking the AFP entailed emotionally, I have been through a nightmare with this. I would not bother to have this test again, I would just get an amnio. Please G-d that all the anxious mothers going through this shall be blessed with only good news.
—Guest Esther

This is a never ending nightmare.

I am pregnant with my first child and 37 years old. I never intended on having an amnio and had no idea what the AFP test entailed and was given very little information on it. I thought it was a reliable blood test and so didn't hesitate. Little did I know the hell that ensued. The test came out positive for Down. The midwife told me not to worry that the sonogram would give us a clearer idea of the baby's health. So I had two of them done in a time spam of about three weeks. The last sonographer told me she saw no indication of Down on the baby and that I should not worry. But yesterday I went to the genetecist and he told me that the sonogram is nothing with regards to determining Down. He told me I was 1/100 chance of Down and so decided on the amnio because all of the uncertantity is putting too much stress on me and the baby. G-d willing everything will be fine. I will never take the AFP again.
—Guest Esther

Unnecessary Worries

I was 28 when pregnant on my son and had a AFP that showed a 1 in 15 chance of my son being downs it was the most awful feeling. I have a cousin with downs who is dearly loved but her life is full of difficulties and will never be independent of her parents. my whole world fell apart at first as the shock was enormous. I went on to have an amnio which was a horrible and painful experience but I had to know, I had to be prepared. Thank God the results came back that my child was normal and healthy, he is now 6 yrs old and I often think about that experience and I regret with all my heart ever having the AFP test done. I'm pregnant again at 14 week and 6 yrs older than my 1st pregnancy and wouldn't even dream of having an other AFP test. If anyone is thinking of having an AFP test done please, please, do yourself a favour and think very hard about it first. i think this test needs to be more reliable because it dose cause unnecessary worries in cases of false positives and high percentages.
—Guest sandra

Down Syndrome is not a tragedy

Unlike many women who get false positive results from their screening, I had the opposite happen. I had the quad screen done and my doctor called me and told me that the results were slightly higher than they should have been for my age (I was 27 at the time) but it was not high enough to be concerned about. I am a nurse and knew that there were lots of false positives from these tests, but never thought that I would be told everything was fine when it wasn't. Fast forward to week 38, I deliver my beautiful baby boy. Everything was fine, he looked healthy, the delivery was very fast but neither of us had any complications. The next day we were told he might have Down Syndrome. Blood tests were done and it took a week to get the results - which were positive. We were heartbroken, but the more we learned the easier it got. Today our little angel is 2 years old and brings more joy to this world than you can imagine. Down Syndrome isn't a tragedy!
—KristinaDuda

Good news ladies Thank G-d!

About a month ago I was told my blood test results came up positive for Down. The midwife told me not to worry because many times the results were false positives and that the ultrasound would give us a clearer indication of the health of my baby. Two weeks ago I had the first one done and the results were good in general but they couldn't see the baby's heart or face, so they send me for another ultrasound which I had yesterday. Thank G-d, I was told everything looks normal and than most likely I have nothing to worry about. I don't want to have an amnio done but the sonographer told me it would be a good idea just so I can have peace of mind. I will have a appointment with the geneticist next week, see what he says. I have been down, worried and very sad about all of this, thanks G-d so far so good for my baby!
—Guest Esther

My doc. is evasive

Didn't tell me anything. Just that I had to get level two us...and my num. Was a bit above normal. I don't even know what I was positive on! I'm 21 and this is my first. All he said was don't worry about it. Yeah right! Put yourself in my shoes bud.
—Guest kait

Turned out ok...

I received a call from my doctors office telling me that my AFP test came back positive and I had to go in for a level II u/s. I went & after genetic counseling & an extensive u/s I was told everything looked ok. I was sent to one more u/s which included examination of the babies heart, etc...once again I was told everything looked good. My daughter is now 4 1/2 and a smart, happy & healthy little girl with no problems at all, Thank the Lord!! I feel like in this day & age, they should have more antiquate testing and results. Please try and not stress ladies, the majority of the time, everything turns out perfect!!
—HellaVanilla

Recieved Normal Results

This is the first child for my husband and I, we are both 28 and have no family history of any genetic disorders. We had the Early Screen testing done when I was around 11 1/2 weeks and I will admit we were anxious to get the results. But we agreed before the test that we wanted to be proactive about our child's health. If something was going to cause our baby severe developmental challenges we wanted to be as prepared as possible when the baby comes. We were blessed to received normal results which is still no guaranty, but regardless of the results nothing could have changed the love we have for our little one. My heart goes out to those of you who received different results, and for what it's worth my thoughts are with you.
—Guest Melissa

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