pregnant again after down syndrome

[bebehelenita]

Hi

I am 30 years old. I am 8 weeks pregnant. This is my second pregnancy. I had a miscarriage last year at 17 weeks. I was later informed that the baby had Trisomy 21. I was also informed that this was a random event.

Has anyone been through the same situation and then had a healthy baby? I am just so anxious and stressed.. I wouldn't change my decision to keep the baby if i found out he/she has down syndrome, but it's just so stressful not knowing whether i would have a miscarriage again...

thanks

[Dragon1973]

I am glad you are able to get the testing done, and that it is the least invasive type.  If you do find out anything that suggests Ds, do you think you will do any further testing or do you think you will wait it out and see what happens?  Please let us know what your IPS test results say, and remember I think there is a higher false positive in IPS - as much as 15% I think I read in my genetics brochure.  So, coupled together with your high level ultrasound, it should be able to give you a clearer picture anyway.   I honestly don't suspect that you would have another Random T21, but in case you do, please know I am here for you to talk or ask any questions to whenever you need to!
Sandi (Dragon1973)
MedHelp Down syndrome Community Leader
& Ds Group Forum Founder/Moderator

[Jenn0316]

Congratulations! I am now just over 16 weeks and an awaiting my IPS results, they will hopefully be in today.  I have opted not to have an amnio is the screen is negative and my level 2 u/s in 2 weeks time is normal.  I am nervous about invasive testing, and I don't think that it will be an easy decision to make to have an amnio this pregnancy.
Jenn

[Dragon1973]

Hi Ladies,
Just wanted to update you from my PP (previous post), I did find out yesterday, I am pregnant!  A whole 3 weeks and 4 days!  :)

Just thought you might want to know - we are all in the same boat!!

Sandi
Sandi (Dragon1973)
Down syndrome Community Leader & Group Forum Founder/Moderator

[Dragon1973]

Hi there,
I had posted a response a while back in your original post (above this one) so I thought I would check and see how you are doing since you posted...
(here was my original post)
****
First I wanted to say sorry about your previous losses.  I have a 6.5 month old son who has Ds, and he is definitely the light of our lives.  We knew prenatally of his Dx, which was done by amniocentesis.  We are currently TTC our second baby.  I was advised that the risk for a second child with Ds is technically the same risk as if you never had a first child with Ds.  So whatever your maternal risk is for your age, is what your risk factor is, baring that you do not have any genetic abnormalities in your immediate family.  (Ie translocation Ds, which is when one parent carries the genetic material for Ds, but does not have Ds themselves.)  I have read on other sites that if you have a child with Ds, your odds are 1:100 for another child with Ds, but I have spoken to a geneticist, and they tell me that is not true.  I suspect on a personal level, that your chances (should there be no other complications with genetics) would be pretty slim of having another baby with Ds.  It just seems highly unlikely, since the odds of it happening again to the same person seem outrageous.  My maternal risk was 1:385, and I can't see me being that 1:385 again!  (Although, my husband and I would welcome another baby that has Ds hopefully without any medical issues though.)  We are a regular family, with no special traits.  I am a police officer, and my hubby is a tow truck driver.
****
I amended a couple of things, realizing you were already 8 weeks pregnant at the time of your original post.  I suspect you are at least 12 weeks along by now?  Have you had any additional testing done up to this point?  (Ie Nuchal Translucency Fold test?)

And Jenn0316, I take it you haven't yet had your test as yet?

With our son Hunter who is now 8.5 months old, we had a prenatal screening (IPS) but then immediately opted to have an Amniocentesis because I was 35 at the time.  And it was purely coincidental that I was the 1:385 and we found out he had Ds.  For each person the decision is unique, but we had decided that we would never terminate if there was Ds, but as a result we were afforded the ability to research and prepare for all the things like Early Intervention therapies (which had an 8 month waiting list where we live) and additional special care in the hospital where he was born.  I had lots of time to adjust and advise family.  But, Amnio isn't for everyone.  There is an additional .5% risk of miscarriage added to your pregnancy after 16 weeks gestation.  

My hubby and I often discuss what we would do if we learned we were having another baby with Ds, and quite honestly, we would NOW welcome the chance.  We are TTC again and are in cycle #5, and I am currently 6DPO and hoping I am pregnant this cycle!  (hoping hoping hoping!)  However, we don't think we would be lucky 1:300 again.  What are your individual outlooks if you should have another baby with Ds?  Bebehelenita & Jenn, I know that for you the situation is a bit different for you both in that you suffered losses of babies with Ds, so while similar, our end results are minutely different.

I think that if you have high risks for miscarriage, (not because of the Ds, but miscarriage alone) you should have screens that are least invasive.  If you had a miscarriage because or as a result of the baby having Ds which we learned is extremely common (and we had no idea just how common until we were told by our high risk doctors) then maybe the right answer is to have an amnio.  I was the type of personality that "NEEDED" to know, one way or another.  I am so absolute sometimes.  There are no right or wrong answers to that one.  Have you spoken with your Geneticist about your testing options to help relieve some of your worries?
Please update us!

Sandi (Dragon1973)
Down syndrome Group Founder/Moderator

[martikadragoon]

No problem. I'm sorry for your loss. Only recently have I realized the full extent of how T21 babies can be lost during pregnancy. I didnt know it was so common that babies passed.

[Jenn0316]

Thanks, my genetic counsellor said that it was a full trisomy, didn't look like translocation.  We have two typical children already, and will go for our screening for this baby in a couple of weeks

[martikadragoon]

My first son TJ has down syndrome. he is 19 months old and I just had another baby boy 4 months ago. .baby Mason is typical, no health problems or anything.

as long as you dont have a translocation (balanced one) then this baby should be fine. if you want to know if you have a translocation then ask the dr' to give you a blood test

[Jenn0316]

I would love to hear more about your pregnancy, as I am in the exact same situation now, I am almost 10 weeks pregnant, and lost a baby last year due to Trisomy 21.