Post # 32
Thank you everyone for the comments. its very helpful to get others perspective.
I don’t think the midwife meant to be so blunt in her appraoch but it caused me to take a step back. she said that if the screening came back positive, it would take until about 18 wks to get a firm and final diagnotics. then she said at that point “can your marriage survive terminating a healthy baby if in fact the results were a false positive”.
1. my husband and I discussed it and at 18 wks we could not terminate. that for us is just too far along.
2. we are considered low risk. no familial history on either side- that being said there is always recessive carriers.
i appreciate everyones insight and personal experiences.
and @cdncinnamongirl- at the 18 wk ultrasound, without having done prior screening, will they tell us if they see anything abnormal?
Post # 33
I opted out with my first pregnancy. I was 19 and had a very low risk factor and DH and I decided not to terminate if there was an abnormalty. We’ll opt out again this time around too.
Post # 34
- Wedding: March 2012 - Pelican Grand Beach Resort
I think it’s really important to be prepared to welcome a special needs baby into the world. Many times, children born with chromosomal abnormalities need special treatment immediately after delivery and those specialists can be on hand to ensure your child’s survival if you know you are most likely having a baby with an abnormality. Plus, you’ll want to ahve already taken steps to start getting support in place if necessary and it may affect how you choose to set up a nursury, your schedule for returning to work, etc. These are things you would not want to be dealing with in the two weeks after giving birth.
Post # 35
I haven’t read all responses but you’ll likely hear many moms to be or mothers say they opted out because they’d love their baby no matter what. As would I… which is why I DID chose to have the testing. Some genetic abnormalities such as Downs may require immediate medical attention when born… heart issues being just one that MAY require surgery or ICU.
Which is why it confuses me why parents to be would say they love their baby unconditionally so would chose NOT to be prepared to handle these situations immediately and with the best people do address any issues on hand at birth.
The testing isn’t always done to make a decision to keep or abort. The testing is also a way to protect your baby by having proper medical care and a firm plan in place at the moment s/he comes into this world.
Post # 36
I should have read all of the responses first… I basically repeated what you said.. LOL oops!
Post # 37
I had the Verifi test done. We decided to have the testing done because we’d rather have time to process any potential issues beforehand and be prepare if needed. My test came back with typical chromosones, so there was relief. I have to say though, I had the NT scan done AFTER I had the Verifi results and knew everything was ok. My NT scan came back as high risk for Down Syndrome. Luckily we already knew that things were fine, but I imagine I’d have been a mess had I done the NT scan first and heard the results. So it is important to remember the NT scan is just as they say, a screening.
I know lots of people who choose not to do any of the testing and that’s great for them. I personally would’ve been too worried my whole pregnancy, so I had to have it done. I envy the women who don’t need the reassurance that I do- they have a whole lot less stress.
Post # 38
Just to be clear to the whole thread: In Canada, the “typical” prenatal genetic testing offered looks *only* for chromosomal abnormalities (trisomes 21 aka Down syndrome, 18 aka Edwards syndrome, and 13 aka Patau syndrome) and neural tube defects. I have no idea how this compares to what’s on offer in the US. First off, the chromosomal disorders are largely random and there is most usually no family history. Neural tube defects can have a family history involvement so women with a history are at higher risk. Also, family history of any other health concers, like kidney disease or heart problems or developmental disorders do not increase the risk of chromosomal disorders and these kinds of conditons aren’t tested for using the Integrated Prenatal Screen. Some of these issues may be identified on the routine second trimester ultrasound (eg. kidneys, etc) but not necessarily.
And yes, the details of the ultrasound will always be reviewed with you and if anything at all is unusual it should be followed up.
Even for those who opt not to do IPS, the second trimester ultrasound will almost always indicate that something is wrong, and there would still be plenty of time at that point to have an amnio to confirm and get a plan in place for birth and immediate baby care. Which is to say that IPS is not your only check-point for screening so it’s not a “speak now or forever hold your peace” kind of a thing.
Post # 39
we were required to (I think anyways) DD had a few cysts on her brain @ our 20wk anatomny scan. We were sent to fetal & maternal medicine where they made us do the genetic testing before our more in-depth ultrasound. Parts of it was usualful and reassuring, other parts not so much. They suggested an amniocentisis which had a higher risk of something happening to her vs the chance of the cyst meaning something more (trisomny 18 to be exact)
Post # 40
I was just giving that as an example for why I would choose to terminate a pregnancy if we knew about a genetic disorder. I know that autism can’t be detected with testing, but growing up with a special needs brother made me learn just exactly how hard it is for them and their parents. He will need someoen to take care of him for the rest of his life.
Post # 41
@spiced latte: I opted out. The more I read about the harmful effects of too many ultrasounds, I didn’t want an extra. And even if the blood work had shown a possibility of something, I wouldn’t have gone as far as an amnio, so I didn’t want the added stress. I wouldn’t have terminated anyway.
Post # 42
If I ever get pregnant we will be doing the testing. To begin with I am a carrier for a few genetic disorders and we want to be prepared. The testing is about being prepared and making a personal/private decision as a couple. If your child has Fragile X or Downs you can become enrolled with intervention specialists, save money for the extra care that is required (special seats, home adaptations, etc that are not covered under your insurance). These things often take months if you are not aware before the child is born. I live in Canada and work in this field- the wait times across Canada are outragous. I think your midwifes statement was biased and inappropriate. Some of the things that can be found through the testing can be treated, increasing the overall quality of life for your child. It can also give you peace of mind if you are worried about your pregnancy.
Overall, it is a personal decision for a couple but I will be having the testing if pregnancy ever happens for us.
Post # 43
Thank you everyone for your comments and personal experiences. I called the midwife back. I got some more clarification and my husband and I have made the informed decision to forego testing. At 18 wks we would not terminate. And aside from very rare cases of in utero surgey, there is currently no treatment for abnormalities. Also, at the 18 wk u/s they will be looking for any major defects so even foregoing the IPS we will still have information. Thanks again!!!
Post # 44
There is no cure/treatment.. however when that baby is born s/he may need immediate medical care.. even extensive surgery… so when deciding, please take into consideration how prepared you want your doctor to be to provide the BEST IMMEDIATE care and prepare for emergency intervention if needed… I’d rather have a team ready to sweep in and take the baby than a “call so and so we need urgent help for him/her!”
Post # 45
We absolutely will do it.
Post # 46
I am 10 weeks along and my husband and I decided we would do the IPS/genetic testing. Neither of us are high risk for anything out of the ordinary, young, healthy etc but wanted to have it done for peace of mind more than anything else. My midwife did caution us about the false positives, but also gave us lots of information on the next steps if there is a false positive, and the pros of finding out early if something is wrong.
It is a very personal decision, and I can see why lots of people go through with it, and why lots opt out of it!