AFP Testing Comes Back Abnormal for Trisomy 18 - Soda Springs,ID

My 2nd son's test came back abnormal. We went in a for a specialized ultrasound, and he was perfectly normal.

Hi T.,
I wish you the best with your pregnancy and my hopes are that since everything has been looking good for your first 19 1/2 weeks, that it will continue to go well.

Unfortunately, it my case I did have a Trisomy 18 baby. This is my story. I was pregnant with twins (we'd gone through 1 year of medical assistants). At 16 weeks my Baby B had a dialated kidney and was already 18 days smaller than Baby A, which were some big red flags that fortuntely you have not had. With mine and my husbands ages we chose to do the amnio. This gave us the conclusive results of what was wrong with Baby B. The doctors didn't think she would make it full term. So, with much discussion and grieving we made the extremely difficult dicision to have her terminated. The main reason is I had a healthy baby who needed the room and nutrients. I'm happy to say that I have an extremely beautiful, healthy and fun 2 year old daughter today. I still think about my little Baby B and know that she is in a better place for her.

To answer your question about the outcome, the doctors explained to me the cold hard facts is that Trisomy 18 causes birth defects inside and outside the baby's body and it is fatal. Babies can live from one minute to usually not more than a month. I know this is not the information you were hoping for.I really and truely believe since everything has gone well up to this point that you are going to have a great outcome. Best of luck and please let us all know how things go.

I don't know what that is, but I will be praying for you.

My sister had a baby born with T-18 about 5 years ago. She never did any of the AFP testing because of the false/positive results. I was pregnant at the same time and had done the AFP testing which came back normal. I requested a 30 week ultrasound because of my fears, at which time they told me that during all 20 week ultrasounds they look for signs of Downs and things like T-18. I'm not sure why they didn't do that with my sister because my niece had all the signs of T-18 in the womb. I don't mean to scare you, but these tests do show a lot of false positives. I do know that with her 3rd child, they had some genetic testing done that was less evasive then the Amino one. I'm not sure what it's called though. If you want to email me I'll find out for you. K. @ ____@____.com.

Hi T. - I'll start with the end first. Our son was born absolutely perfect!

Please please please please don't go searching on the internet about T-18 babies until you know for certain that's what you've been dealt. It will only increase your stress level. Remember this is only a statistical analysis and can vary greatly based upon even one date being only a day off, etc.

Now for the details - I also had this test come back showing a very high likelihood for Trisomy 18 - something like 73%. We went to meet with a genetic counselor and she started talking about abortion. She was absolutely terrifying. Truthfully, she made me so mad that I yelled at her for even suggesting that we terminate based on a statistical analysis and even before suggesting an amnio. I wasnt out of control but I was livid that she would plant the idea of terminating without any concrete evidence.

I went home and did the wrong thing - I went to the internet and was grieving terribly even before I knew what the reality of the situation was. My fear and grief were overwhelming. My husband gave me terrific support and after talking and lots of tears we understood that God only gives us all so much time on this earth - we would savor any time we have with our son if it's 40 years or 4 hours.

We had a level 2 ultrasound and the doc decided on that basis that he was not a T-18 baby. He was a high-risk expert and one of the things he said was that T-18 babies always have closed fists - our son showed us an open hand and we have a great "Hi Mom" ultrasound picture. (Normal babies have closed fists too but T-18 babies dont have open ones) We decided to do the amnio, partly because I had myself so worked up from info. on the internet.

May God bless you and your whole family.

We also had this problem but our child was born just fine. I had a rough pregnancy and delivered at 37 weeks but thankfully everything turned out okay. We had a CVS because I received the results at 15 weeks. Take care and have faith.....

My test also came back bad. my husband and I were on our honeymoon and got the news. It made for a bad trip and we did the amnio a few days later. Sometimes if they test even a few days too early it can come back bad. Our amnio came back normal and we have a very healthy 5 month old baby girl. They also told me if you are over 30 sometimes the test come back bad. So right now relax and dont worry about what could be. They may have tested just a little early. I hope all works out and good luck.

I want to further agree with the other moms that have posted -take the time to get the results and answers that mean the most to you. And secondly I want to say- that Doctors can be wrong (so can the results of these tests!)

Today we have a healthy, lively 2 yr old. However about 5 mos into my pregnancy the doctors started noticing that our baby was already behind in growth. They started having me come in for more and more ultrasounds to check the growth of the baby.

Between 6-7 months the baby had stopped growing and they knew something was wrong, but didnt know what. They told us we should expect the worst. Around 25 wks we started having ultrasounds every other day to check on the baby and make sure he was doing okay. Finally around 30 wks we were told some awful news that our baby's bloodflow had reversed and needed to be delivered immediately. They told us that they were positive from everything they'd seen that our baby had Trisomy 18 and would never leave the hospital. They told me I should deliver vaginally (even though the baby was transverse) it would be hard on the baby but since he wouldnt make it anyway it would be okay. Our other option would be a traditional c-section that could limit our childbirth options in the future but would give the baby a chance to survive for a short time.

We choose the second option even tough it would be tougher on me (we may not have children in the future) but would give the baby the best chance to survive. We are blessed that we choose this option because our tiny 1 lb 3 oz baby was delivered safely - and without Trisomy 18. Our dr said he'd seen many cases with the same "warning signs" our son had, and they had all had Trisomy 18. I'm happy to say we were the one in a million where our son did not have trisomy 18. He spent 3 mos in the NICU and had a trying time but is doing fantastic now! Oh- and my OB was able to do a normal c-section for us after all so we will (hopefully) have more children in the future.

We still don't know why our son did not grow, but he was delivered safely at 30 wks at 1 lb 3 oz and is doing great today.

Hi,
I had the AFP test with my 1st pregnancy at approx 5 mths along. A normal reading at that time would have been somewhere between 60-120, mine read 980. I was sent to a specialist that could take care of any problems while the baby was still inside. However, I didn't even have a test tubes worth of amniotic fluid in the womb, so it was hard for the doctor to see everything with a sonogram.
So, instead of doing an amniocentesis where they get the fluid from the inside of the womb, they had to take it from the wall of the womb. It didn't completely grow, so they couldn't tell anything from that.
Before, I go any further, do to pretty graphic details & this may not be the same as you have. I am going to stop there, if you want more info, you can email me at ____@____.com or call me at ###-###-####

Yes, I had this happen to me with my third child. Prior to this I had never heard of Trisomy 18, unforttunatley I started looking on the internet and ended up scared and completely freaked out. My husband and I spent several days trying to decide whether we wanted to do the amnio or not due to the possible complications associated with it. Ultimately we decided to do test due to the severity of the condition - we fealt we needed to be more prepared for it emotionally if that was the case. Luckily after waiting for the results (they told us 2 weeks but it was a couple of days in our case) the test came back fine. Looking back I had all the routine testing done with all my kids and I am not sure I would do again if we had another due to the emotional stress we ended up with over all the "what If's" that came about with the results we received. I wish you luck and if you want to talk to someone further that has been through this you are more than welcome to contact me.

T., this will be a difficult time until you know for sure. You can get more info about trisomy 18 at www.trisomy18.org . a good government health site with more recent info is http://ghr.nlm.nih.gov/condition=trisomy18 .

This is a very rare and medically fragile condition and only a small number of babies live past early infancy. I hope your AFP test is a false positive and your amnio will be negative. If not, these sites will direct you to parent and professional support in your area.

take care, S.

I have not had this testing done because of all the false positives. I did not want to go through the emotional stress and grief. I figured that if my baby had complications, I would still love him for however many days or months I was given the priviledge of having him. I believe that everything happens for a reason. And I believe that each little baby that is created has it's own soul that, however long they are granted to live on this earth, will go back to heaven. So because of my beliefs, I knew that any testing would not change my mind of whether or not I would have my baby. I will be praying for you. I will pray that it is a false negative and that you will be comforted. And if it is true that your baby has tri-18 you can look at the wonderful example of this family who cherished every moment with their baby. http://www.ignitermedia.com/products/iv/singles/570/99-Ba.... I bet they could never have imagined living without Elliott, even if it was for only 99 days. There is my belief. Best of luck to you!

I have not personally had this test come back abnormal... but usually have to go through more extensive testing (when pregnant) because of some pre-existing health conditions that could effect my pregnancy.

anyway. that said, please understand that the afp test is an indicator test, not a positive or negative test... by that I mean that all an abnormal test means is that you need more testing. also the rate of "false positive" test results with the afp are high.

Obviously, this probably isn't going to ease your mind until you know for sure... but there are a lot more tests that are much more accurate. they will probably do a ultra-sound with a perinatologist (there is a lot they can measure in the brain to tell if there is an indication of other problems). there are other genetic tests as well as doing the amnio which is a lot more conclusive.

hang in there... my sister had an abnormal afp, and after two long weeks of waiting, everything turned out o.k. you and your family will be in my prayers.

Hi T.,
AFP tests are notorious for bringing back false positive tests for abnormalities. I think they have more false positives than true positives. I never allow them to perform this test on me because of this. Also, amnios bring with it a risk of miscarriage, so I won't do those either. I had a friend who had the same scenario you described. Poor thing was so distraught for those weeks of waiting. Everything came back normal. You may have gone into preterm labor because you were dehydrated. Drink lots of water and don't overdo things. I know, you have two other children, makes it hard to rest, doesn't it. Anyway, I hope this has been helpful.
Blessings,
Tonya - mama to 6 children