trisomy 18???

I'm 24 weeks pregnant & about 6 weeks ago we found out that one of our tests came back positive. After meeting with a genetics doctor we learned that our baby has a 1 in 99 chance of having trisomy 18. Its a fatal form of down syndrome. We refused the amniocentesis test due to all the complications It could cause & we figured if there isn't a cure then why bother. Now I'm wondering if I made the right decision. I'm stressing over it. Not knowing is bothering me. Has anyone else gone through something like this?

Comments

  • I'm sorry I haven't but I just wanted to say good luck to u..I've heard about the complications from an amino test its Just so darn confusing all I can say is pray (if that's Sumthn u do) that 1 in 99 is a looong streach for u..I know stress wont help u much goood luck to u I hope it works out...I have my quad test Friday and that test is so darn confusing to me...again gud luck mommy :)
  • And u made that decision for a reason don't have regrets..
  • I only took that test with my first one because they called me at work and told me the same thing...I went in for an ultrasound that told me they gave me the test a few days too late. There is such a small window of time to take that test. I would ask about ultrasound and see what that shows. BTW my daughter is now almost 12 and perfectly healthy. Good luck and try not to stress.
  • @ new2_this, thank you. We pray everyday about it & have lots of people praying as well. @ iluvladybugs, we met with a genetics doctor & then had an ultra sound done with a specialist but wasn't given many answers. They said they could see through the ultrasound & most can't so we are left waiting. I'm sure I made the right decision but waiting is the hard part. Its in gods hands & I just pray that he is healthy.
  • I have a 1/148 chance of my boy having down syndrome but I think I am going to take the test just at 30 weeks though b/c I was afraid to miscarry
  • I think you made the decision at the time for a reason. Can't imagine how worried you are though. I had the nuchal scan and bloodtest but decided I wouldn't have any invasive tests should the results come back high risk. It is a personal decision though and depends on what you would do with your results. I felt the results wouldnt affect my decision to have my baby so I wouldnt go for the test. I have known at least 3 people with high risk results and they had perfectly healthy babies
  • Think u knowing for sure with the needle done changes what?. I refused it too but for cystic fyborssis and I feel me knowin if he has it or not what's gonna change ?? The risks aren't worth it to me or knowin now. I feel I'm prepared regardless so he's my baby n I don't care what happens ya know. Just think tht way lol
  • Will keep your family in our prayers...
  • Thank You all. I have done alot of praying & my family is amazing, they are being very supportive. I have chosen not to do the test. I figure that nothing can change his chances so why bother and I would stress more if I knew 100% that he had it then I am now, not knowing. Tomorrow we go in for a 3d/4d and we are extremely excited to see our beautiful baby. 13 more weeks until I can hold him in my arms. :-)

    @ zbutt_mom, I will keep ur little Guy in my prayers & I'm sure that either way ur baby boy Is going to be perfect!
  • edited May 2011
    @blessed_with_babies, I know this is different but when I was about 26 weeks pregnant with my son, we learned that he had a heart defect that is very common in kids with down syndome. They told us that we could do the amnio to find out which we decided to do to prepare ourselves. It would in no way change the way we felt about our son but help us prepare to better care for him. I had the amnio done shortly after and we got the results rushed back that said he was "chromosomally normal." He obviously still had the heart defect (which required open heart surgery when he was 8 months old not to mention many other birth defects), but we felt we made the right decision for our family. It wasn't too painful, just a small pin prick and kind of awkward and we had no complications from it.

    Also, trisomy 18 isn't a form of down syndrome at all. Down syndrome is trisomy 21 (an extra copy of chromosome 21). Trisomy 18 is known as Edwards syndrome and is not always fatal (but often is). Here is a website for some information if you are interested: http://www.trisomy18.org/site/PageServer

    I hope that you have a completely healthy baby boy! Good luck!
  • Mine came back with 4% chance of Down Syndrome but said that baby looked good on ultrasound. They said although u/s was reassuring, only way to know for sure was amnio or blood tests after birth. I chose not to have the amnio for ur same reasons. It's not like it will change anything plus of the risks. Leave everything in God's hands! & odds are in ur favor. So pray & keep a positive mind that everything will be fine! That's what I'm doin.
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