abnormal fetal protein test

M

melanalyus

Cathlete
I just had to post my result of my AFP (triple test). They showed that I am at a higher than normal risk of carrying a child with Down's Syndrome. My risk is 1/240 (less than 0.5%). It's just so scary. I don't know how to put in words how I am feeling. Even though my risk is low, it's still extremely difficult to hear that I have a 'positive' test for down's syndrome.

Tomorrow DH & I go to the Cities ( a 2hour drive) for a Level 2 ultrasound & for genetic counseling. The level 2 ultrasound will check for for any signs of down's syndrome (small fetal bone, thickening of skin behind neck, presence of nasal bone,and others...). If Ultrasound is fine we will probably not have an amnio. An amnio is the only for sure way of knowing if our baby has down's. The problem is that the amnio has a 1/200 risk of spontaneous termination of pregnancy. So, the chances of adverse effects from the test is higher than the chance that my baby has down's. I"m not sure if I can wait another 18-20 weeks to find out if the baby has down's...

Lots of tears & worries here. Please include us in your prayers.

Melanie
Due 1/25/04

" Take care of your body like it will last a lifetime. Take care of your soul like it will last for eternity"
 
It's going to be okay...

I know you are worried, but there are lots of people who get these type of results from the AFP test. Try to think positively and not get too caught up in the crazy statistics. I'm sure your doctor told you about the faults in the AFP test and that there are alot of false positives out there. Just think how great it's going to be when you find out that you have a healthy baby.

Just FYI, I am 33 weeks pregnant and because of my advanced maternal age, I chose to go through with the amnio. It gave me the peace of mind I was looking for and I had a wonderful and very experienced doctor.
 
RE: It's going to be okay...

I almost didn't get the test for fear of a false positive. I asked my doctor many questions about false positives prior to getting test. He said that most positives on the test are false positives because of the way the test is, not a no or yes. Hope this helps. My sister as well as a friend's sister and sister and law all got positives and had healthy babies.
 
RE: It's going to be okay...

Can I ask you ladies a question-- Why do you guys even bother with taking that test? I think that test is mostly a waste of time and money. Who cares if the baby has a downs? There's nothing you can do about it. My doctor offered that test to me and I refused. If the baby has a downs, I still would love it the same. There's no reason why you should take the test and it comes back positive and you worry your brains out. Just have faith in God and hope for the best. I got lucky and had a perfectly healthy baby. I'm pregnant with my second and I still won't take the test no matter what. Even my doctor admitted the test was a waste of money and is a stupid test. Another test I absolute refuse is the amnio. I don't care how good the doctor is. I still won't put my baby and myself in that risk. If you're an advanced maternal age, who cares? Just have faith. Please don't think I'm being rude or anything. I am not. I just don't understand why you ladies put yourself through all this. My common sense tells me not to take the tests. Especially if the false positives rate is so high.
 
RE: It's going to be okay...

Hotspur, I feel the same. I refused to have those tests done with my last baby.

If we decide to have another baby (I am 36 right now) my doctor knows not to even ask. What is the purpose of the Amnio? To make a "decision" on whether to let the baby live or die? Hmmmm, I don't even want to go there.

I will take what God gives me and love it just the same. The AFP test is really a waste of a "blood test." And I hate anyone pinching me more than necessary, especially since we get pinched to death when we are pregnant, as it is.

Blessings from our home to yours...Runathon
 
Melanie, I WILL be praying for you like I prayed for Shanda (who had somewhat of a similar situation and the baby was born healthy).

I like your signature line A LOT! "Take care of your body like it will last a lifetime...take care of your SOUL like IT WILL last for eternity." <><...

Blessings from our home to yours...Runathon
 
RE: It's going to be okay...

I wasn't going to have the test (and I wouldn't do it again), but I was having blood drawn anyway so I thought, why not? Besides, I'm only 30 years old and at low risk for down's syndrome. I was certain the test would come back normal and then it would be a 'comfort' thing--nothing to worry about.

TRUST ME when I say this: I WOULD NEVER HAVE THE TEST DONE AGAIN.

It's super easy to have faith in God when things are going real well, it's tribulations such as this that it's difficult to give it all to God. Trust me (again) I am hourly giving this over to God & praying for guidance and wisdom from my great Shephard.


Melanie
Due 1/25/04

" Take care of your body like it will last a lifetime. Take care of your soul like it will last for eternity"
 
RE: It's going to be okay...

I took the test all 3 times, aware of the false positives, b/c if my child had Downs' I wanted to know about it in advance and be prepared when he/she was born, rather than find out in the delivery room. I knew I could always do the level II ultrasound to see if the results were falsely positive. I understand why some wouldn't want to take the test at all.

Jen
 
Hi Melanie,
I'm so sorry your test came back positive. I have 2 freinds that had that happen and the amnio showed the baby did NOT have downs. Those tests have a VERY high false postive rate and I have heard lots of people who ended up having amnios but the amnios turned out fine even though the alpa protein test was positive.

As for the amnio, my Dr. told me that the miscarriage rate is directly linked to the skill of the person doing it and thier exprience. He also told me the 1 in 200 numbers are outdated and the miscarraige rate is more like 1 in 1,000 but they don't offically change it because then more women would want the test and it would cost insurance more money.

I had an amnio 11 weeks ago and I was very scared about the misscariage and the pain of the test. I had 3 babies with out it but DH and I decided because I'm 35 to get it done.

The test was not nearly as bad as I had worried and I had ZERO negative side affects. They tell you to rest for 24 hours but after that I was back to chasing my 3 small kids.

And best of all I got to find out the baby is healthy and I'm having a girl.

If you get the amnio make sure the person doing it is very expreinced and ask about their personal misscarriage rate.

I hope it all turns out fine and you are in my thoughts. I don't like that alpha fetal protein test because it gives so many women anxiety with its high false positive rate.

Marci
 
Hi Melanie,
I know exactly what you're going through. The anxiety is terrible I know. At my nine week ultrasound I was told my daughter had thickness on the back of her neck and they told me it was a marker for either downs,T-18 and Turners syndrome. She was diagnosised with cystic hygroma I wasn't offered the AFP test just the amnio. The wait was horrible but, she's here and she's healthy. I will definetly say a prayer for you. I know it's hard but keep the faith I know it will turn out fine just like mine did.


Shanda
 
>Melanie, I WILL be praying for you like I prayed for Shanda
>(who had somewhat of a similar situation and the baby was born
>healthy).
>
>I like your signature line A LOT! "Take care of your body
>like it will last a lifetime...take care of your SOUL like IT
>WILL last for eternity." <><...
>
>Blessings from our home to yours...Runathon

Thanks for your prayers, they worked!!!!!!!!!
Shanda
 
You guys are so awesome. I could totally feel God's hands on us as we had the ultrasound. It was as if God was holding my hand the whole time telling me that everything would be okay. Your prayers are awesome. Thank you so much!

The risk of having down's syndrome for our baby was 0.4% before we did the level 2 ultrasound. Afterwards it jumped down to 0.2%. They found NO signs of down's whatsoever. We opted out of the amniocentesis--since statistically we are 99.8%+ certain it was a false positive & baby will be normal. The perinatolgist agreed with our decision & did not want to risk with amnio (their rate for miscarrage at Abbott is 1/400

Because of all the pain we've went through, we both decided to go ahead and 'reward' ourselves by determining the sex of our baby. We are having a boy! I am so excited!!! yahoo.

I cannot thank you all again for your tremendous support & prayers. God Bless!

Melanie
Due 1/25/04

" Take care of your body like it will last a lifetime. Take care of your soul like it will last for eternity"
 
Melanie, just have to tell you that I will REALLY be praying for your peace and trust in the Lord.

I have to agree wholeheartedly with hotspur, but I've also done things like this in the past and without exception I've wanted to kick myself for not trusting the Lord "once it's all over with". It's being in the midst of it that is extremely trying. Whenever I hear of the things that OB's are doing I just want to scream, but it's taken me several birth's and many trials to have that trust in the Lord so I will never make light of anyone who is going the traditional route in regards to childbirth.

I would think it would be a real comfort to see just how many people have false positive tests. (it makes me irrate that there ARE this many false positives and they continue to do this, but it makes them a load of money to be able to do all the follow up tests required). I remember with baby number 2 I had an ultrasound done and I had a placenta crossing the cervix which almost always moves up, but for the next 4 months or so I was worried about placenta previa. As I look back the whole situation makes me mad as the placenta did move up and caused unnecessary worry which is more harmful to the unborn baby than was necessary.

I can continue to tell you not to worry, but Satan (and this is exactly who is the author of fear) has already planted this seed of worry and concern, and what I can tell you is that the word of God tells us NOT TO FEAR. This baby is EXACTLY WHAT GOD INTENDED IT TO BE, NOTHING MORE AND NOTHING LESS and he has a plan and you ARE going to trust Him. Alright??? Did I make myself very clear!!!

Briee
 
Hi Melanie,
I am sorry to hear about your AFP test but don't let those tests worry you. One thing especially, when you go in for your level 2 ultrasound, try not to worry if they find some markers. I had a level 2 ultrasound at 18 weeks and they found some Down's markers--such as the fact that my son's head was growing faster than his limbs and that his limbs were smaller than they "should" be at that gestational period. They also found a neck fold which is another marker. I was worried sick and was debating on doing the amnio (the doctor's were pushing it) but I decided that even if it was a Down's baby, I would not terminate. I would be sad, disappointed, angry, etc yes, but not enough to terminate. Needless to say, I gave birth to a beautiful, healthy, normal baby boy. I think sometimes that technology has made things worse for us pregnant women. They can see too much and "predict" too much nowadays and it makes it scary during a time when we should be enjoying the process. I can see if they find that the baby is going to have some devastating disease/abnormality that would not allow it to have a good quality life that it would be good to know this in time to decide whether to terminate but I know so many people whose "tests", whatever they were, came back positive and they ended up with normal, healthy babies. Think really hard about whether you really want/need these tests---what would you do with the information? Above all, try not to let it all scare you. Enjoy your pregnancy, do everything you can to make it a healthy one and pray that all turns out okay in the end. Good luck!!

Kathi
 
I think there were some replies while I was typing away. Reply #10 sums up my experiences today. You are ALL so wonderful & I feel it has been a blessing to be part of this forum!

Last week when I had my 20 week ultrasound my ob pointed out that my placenta was covering my cervix. She said it would mean at least one more ultrasound & if it didn't move that I would have to have a C-section & bedrest.

A wonderfully spiritual friend of mine had laid her hands on bellly & prayed that the placenta would move & that I would have peace. Well today, my Level 2 ultrasound showed that my placenta had completely moved up and is nowhere near the cervix! Isn't that awesome?!!? The placenta moved completely out of the way in less than 7 days. God certainly is faithful!

Thanks again ladies for all your prayers! :)

Melanie
Due 1/25/04

" Take care of your body like it will last a lifetime. Take care of your soul like it will last for eternity"
 
Please excuse me if anyone finds this post offensive, I strongly felt the need to answer Hotspur's questions as to why do prenatal testing either AFP,amino, etc.

The reasons I'm glad that I had prenatal testing are that
We found out at 34 weeks that my son had Trisomy 18 with serious health problems and that his chance of survival were almost non-existant. He was born at 42 weeks and 1 day. He died shortly after birth, lying peacefully in my arms. I'm very glad that we knew ahead of time of his illnesses because

1) We were able to discuss options with our minister
2) our minister was present at our son's birth and able to do a baptism at 4 in the morning
3) our family got a chance to see our son alive, He died 5 mins after birth
4) we had a month to arrange the funeral service, I was able to go and pick up his outfit, etc
5) We had time to met with all the "experts", read, pray and meet with our family and friends, and ministers before making any life or death decisions. I was able to make well informed decisions that I am very comfortable. I think certain decisions would have been different if they were made during an emergency situation.
5) The hospital is prepared to care for you, your baby and your family.
6) IF you baby has life threatening illness, a neonatal emergency team can be standing by!!!!!!

Can you imagine, being a post-partum, grieving mother faced with making life or death decisions, and having only moments to decide?

I am very thankful that prenatal testing is available. It is not only used for decisions to terminate a pregnancy, there are many more reasons to have it done. BTW I had a false negative on my AFP, it is not a great test but it's a good test.

I wish you all healthy and happy pregnancies!!! Kim
 
Kim I am so sorry to hear about your loss. I agree with you about the amnio and had it done this pregnancy because as you mentioned my DH and I wanted to know what we were facing in case something was wrong. By knowing ahead it would give a chance to prepare mentally. I am really glad you were able to prepare for this but I can't imagine the pain. You and your DH are in my thoughts. I personally think prenatal tesing is a good thing. I'm not fond of the alpha fetal protein test because it has so many inaccurate results but I think there are some other great tests available including the amnio.

Marci
 
Dear Kim,
My heart goes out to you in your loss. I can almost not imagine anything more painful. Thank you for sharing your experience with us.

I was not going to respond to this thread, because this is a very sensitive topic for me, but your response has given me courage. And I hope that I don't offend anyone or freak anyone out. I really don't have a general opinion about testing, so I speak only for my husband and myself.

I had a positive AFP during my 4th pregnancy for trisomy 21. My husband and I agreed to a level 2 ultrasound to see if we could get more information, but we refused an amnio. I could not live with the risk of miscarraige and abortion was absolutely out of the question. During the course of the ultrasound a heart defect was discovered, giving the baby a 5% to 10% chance of Down Syndrome. I was terrified the entire pregnancy, not of Down Syndrome so much, but of the heart defect. Every day, every moment, I was afraid that the baby would die inside of me. I quit exercising and ate 24-7 and gained a whopping 80 lbs. The doctors tried to reassure me that this was not a serious heart defect (as heart defects go) and that probably all that would happen is that the baby would not gain much weight until they did surgery at between 2 and 4 months.

I did deliver Malcolm at a level 3 hospital where a neonatal team was prepared to address his needs and for this I am greatful that we had the knowledge we had, even though it was difficult to live with. He did have Down Syndrome, but I did not care, because he was alive. He spent a month in neonatal intensive care facing a heart surgery, which thanks be to God did not have to happen and has not happened yet. During this time our church took extremely good care of us, providing meals, child care for the other 3 kiddos, financial help, running errands. Some one even came over and cleaned our carpets. A number of women simply came and sat with me at the hospital, which was a wonderful comfort.

The big challenge over the next year was that Malcolm was unable to suck at all, so I had to pump my breast milk and feed him via a tube that went up his nose and down into his stomach. In many ways it was a really hard year, but he was the sweetest baby and we all just fell head over heels in love with him. I don't think that I have ever experienced such a fierce and tender love than the love I have for Malcolm. I don't love him more than the others, it just feels different. He is such a blessing. I would never change a thing about him and I am so glad that God gave him to us.

That being said, I did not want to go through all that again and so I was somewhat anxious during pregnancy number 5. We made a decision to undergo no testing at all. Even if the results were good, I knew that I would have no rest in that. I just prayed for a healthy baby and if God had different plans that He would give us the grace to endure the trial as He had so faithfully done once before. (And please--I do not pass judgement on those of you who choose to test. That was just how we chose to handle things this time.)

I am sorry for the rambling post, but anyway, we were blessed this time with a healthy baby boy, who has no nursing problems and who is howling to be fed at this very moment, so I had better go.

I pray that you all have healthy babies, but also know that God's blessing of children sometimes takes an unexpected form as we have experienced with our Down Syndrome child.

Take care
Maggie
 
Both of you ladies (Kim & Maggie) shared stories about Trisomy 21. Thank you. It's obivious that they both are very personal stories & I appreciate you opening youselves to us. Trisomy 21 different from down's syndrome, isn't it? The chormosomal defect occurs on different chromosomes, right?

I want to add that I won't have the test done with future pregnancies (if we are blessed with another). The test is highly inaccurate, and has added a great deal of stress on our lives. I daily pray for the health of my new baby, much more feverishly than I did before. I anxiously await January, when we'll know for sure...

Melanie
Baby boy due 1/25/04

" Take care of your body like it will last a lifetime. Take care of your soul like it will last for eternity"
 
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