So I talked to the nurse for a long time about this today.
I at first was very against it. I don't judge people who chose to terminate at all and it's a really personal choice. But for me? Not an option. Down's Syndrome doesn't worry me a bit. Progeria is the only genetic condition that frightens me at all and that's less likely than being struck by lightening, after being in a plane crash on a flight i booked after winning the lottery.
But there is a possibility, apparently, albeit vague, that things could be discovered that could change the kind of prenatal care I would need to receive. And you also get to find out the gender early - which is a bonus.
But if it comes down to amniocentesis? No way. That could harm my baby.
Also, I don't care what people believe, believe whatever you want, you have my blessing as long as it's not bigoted or violent. But genetic issues are almost always determined at conception and CANNOT be changed. This is known and understood. Down's Syndrome is not something that can be fixed or prayed away. If you catch it early, you have the choice to terminate or to prepare. That's about it.
I don't want my baby to have any additional pain or challenges in his or her life. But I'll love my child regardless. A scan won't change anything.
This kind of testing wasn't available when I had my son. Is this a test that reveals gender? Does anyone know the cost?
So a few things. First, I'm from canada and an expat living in the USA with my american husband. So all this nonsense about deductables and copays is all very new to me so i might mess it up. In canada it's free so if you're canadian, you're covered.
From what i understand, here in this country, we're looking at about $2000 without any coverage. If you are fully covered, it's about $200 (which doesn't make sense but maybe somebody can explain that to me) which goes toward this deductable thing (i think i have a handle on that bit)
Coverage considerations vary from provider to provider. For my provider through work, you have to qualify in some mysterious way - i'm not sure yet what those qualifications are but they said to call the lab doing the scan and get a code from them. Call the provider back and give them the code and they can usually ballpark it.
We are a low risk couple but did anyway because we just wanted to know. The added bonus is that now, at 12 weeks, I already found out that we are going to have a girl :-). Such fun to know the gender so early!!!
We decided to do the "counsyl" testing - so checking me for genetic disorders. If I am a carrier for anything then they will test DH, if he is a carrier we can decide to more forward and see if the baby has any of those disorders. I was hesitant at first because DH and I both agreed we would continue the pregnancy regardless, but ultimately I felt as though if something was wrong we could prepare for that and make sure all the resources we need would be available. I think regardless it is a super personal decision so whatever you and your partner are comfortable with!
@babygirlm181 I talked to my dr about genetic testing yesterday and she did not recommend doing it for us. She said the odds are 50/50 and were just as likely to get a false positive and stress the whole pregnancy over nothing. She also said most of the time at the 20 weeks u/a they can tell if there's any issues going on.
@brooke2327 i'd be verrrry suspicious of a doctor who said the false positive rate is 50%. Also, these genetic tests we're talking about are all down between weeks 12 and 14 for a specific reason. They can absolutely tell from the nuchal and blood tests if your baby's brain didn't form (for instance).
These blood screening tests tell you what *chance* your child has of having an abnormailty. It does not tell you whether or not your child has one. The diagnostic tests (CVS or amnio) will do that.
We are choosing not to get genetic testing done because my doctor said the tests don't have a high success rate, that it's possible to get a false positive or negative then you could be left worrying for no reason. He also said that we couldn't have the tests that have a better success rate without getting the other test done first, then labeling me at high risk so I could get the other test, which seemed a little more invasive to the baby if I understood correctly. And again this test wasn't 100% accurate as well. To us it didn't make sense to go through all of the time and money if it ended up being incorrect.
I will not be getting the testing done either. It's not going to change anything in regards to terminating or not terminating...we will not terminate regardless. I don't want the extra stress plus I'm fully prepared to deal with the cards that are dealt for me (whether it is a perfectly healthy baby or one with special needs). It's a personal decision and I don't think there is a right or wrong answer to this.
@babygirlm181 I talked to my dr about genetic testing yesterday and she did not recommend doing it for us. She said the odds are 50/50 and were just as likely to get a false positive and stress the whole pregnancy over nothing. She also said most of the time at the 20 weeks u/a they can tell if there's any issues going on.
ya I am not getting that done this time the first time when I herd it was positive my heart dropped and I started to think that I had done something wrong
@brooke2327 i'd be verrrry suspicious of a doctor who said the false positive rate is 50%. Also, these genetic tests we're talking about are all down between weeks 12 and 14 for a specific reason. They can absolutely tell from the nuchal and blood tests if your baby's brain didn't form (for instance).
My obgyn is the head of medical staff at her hospital and has been in business for over 25 years. I did lots of research on this woman before I put mine and my child's life in her hands. She's actually so trusted and popular in my area she stops taking patients with certain DD all the time because she gets booked up and she wants to make sure she is there for every single birth and not relying on other on call doctors all the time.
She worded it like this.. there is a 50% chance the test is correct and a 50% chance it is wrong. We very well could get a negative and something actually still be wrong.
DH and I have decided not to have any genetic testing during the first trimester. While tests are improving, many are still too invasive for our peace of mind and the accuracy rate (or lack of accuracy) is troubling. We've decided that the standard testing at 20 weeks is fine for us. I'm under 30, and there are no known genetic disorders in either our extended or immediate families, and we feel good with this decision.
I understand the abortion debate, but it didn't really affect our decision, and I kind of wish it had not been brought up. We are Christians, very pro-life and would never terminate. However we didn't decide against first trimester testing because of a "termination" option, and we don't feel as though we are failing to trust in God by undergoing standards genetic tests at 20 weeks. We simply believe the baby is a gift and are trying to make what we feel are the best decisions for baby. If I was personally asked for advice on testing, I would probably advise against first trimester testing based upon my research, but I wouldn't judge someone who made a different decision. I would say congrats to those with positive news (and know the gender - slightly jealous!!!) and I would pray and mourn with/for those who received bad news. I agree that it can be a little insulting to insinuate (intentionally or otherwise) that a person must be considering abortion as an option if the baby isn't "perfect" when many people want reassurance or time to prepare.
I do feel this a personal decision, and everyone should do their own research and discuss all tests with a provider. I hope you all make the right decisions for your family and that you all experience a peace of mind in your decisions.
I am getting the testing done. There is something about knowing that gives me some sense of control and comfort if that makes any sense. I've already been screened for several genetic disorders such as cystic fibrosis and fragile x and plan on having the verifi test done in a few weeks.
I was initially freaked out when I went online and saw that my insurance company hasn't processed my claims yet for the previous genetic testing I had done. I think my claims will end up denied due to lack of medical necessity - no family history. I called Progenity and received the same information as @kyleneum13. If my insurance company denies, they are only going to bill me 99.00 while they appeal through my insurance. They call it their peace of mind program. I was really worried there for a few minutes, one test was over 6k and another was over 4k. They assured me the most I would be billed was 99.00.
I'm going to poke my head in on this discussion, and copy a response that I posted on another one concerning genetic testing.... and add a new thought at the end
Even if you are at a hospital that has staff that can be there for any situation, I still recommend knowing, so they can make sure the proper staff is actually in the building when you deliver. For those without any risk factors, I would opt for the screening tests, and then if something pops go for the diagnostic tests. We go straight for diagnostic since we are at a high risk for chromosome abnormalities {husband is a carrier, and have lost 2 babies due to severe abnormalities, and 6 other losses also due to the chromosomes}.
Just an example, if something were to pop up where the dr's questioned something with their heart, and then it was later confirmed via testing or fetal echo cardiograms {I think that's what they are called, it's been 5 years}.... certain conditions require a cardiologist be present at birth. Even at the best hospitals, the cardiologist they need isn't in the hospital 24/7, so they would plan to induce at a time when they can have the dr present.
There are lots of other examples, but that's just one off the top of my head since I've literally been through that situation myself. I'm not saying EVERYONE needs an invasive test, but if the dr feels there is a call for testing, either non invasive or invasive, trust them, and go for it. It can make a huge difference in what staff is available to care for you and your baby. Also, if you happen to be carrying a baby with severe chromosome abnormalities, you are pre disposed to pre-term labor and other pregnancy complications that could be life threatening to you, not just the baby. Knowing can make a difference... I would NEVER consider termination, but knowing allows me to get the best prenatal care possible {it includes switching hospitals and dr's since my local hospital does not have a NICU, and even with life flight, it can take an hour or more to get a baby to the hospital that does... that can be a critical hour} as well as the best care for my baby, to give them every fighting chance.
To add, since it was brought up in this discussion. Spina Bifida is something that has in utero surgical options available. I know there are other conditions, but I can't think of them. This one comes to mind since a friend of mine just gave birth to a spina bifida baby. The in utero surgery was not an option for her little guy {different types} but she was able to speak to several specialists early on and discuss what options were available during pregnancy, and have a game plan in place for his surgery immediately after birth. For this, and some other conditions, knowing while pregnant can be extremely beneficial.
Genetic testing of any type is not solely about termination. It's about making sure that you are mentally prepared and that you get the absolute best care possible. Early intervention is so important for so many life threatening conditions!!!! We have the technology today to be better prepared than any generation before us, why not take advantage of it???
I am having the testing done next Thursday. It also includes an ultrasound to check for physical abnormalities. My husband and I have decided to proceed with testing for peace of mind, and so we can prepare during the remainder of my pregnancy should something be discovered. Mine is 100% covered by insurance.
I'm going to poke my head in on this discussion, and copy a response that I posted on another one concerning genetic testing.... and add a new thought at the end
Even if you are at a hospital that has staff that can be there for any situation, I still recommend knowing, so they can make sure the proper staff is actually in the building when you deliver. For those without any risk factors, I would opt for the screening tests, and then if something pops go for the diagnostic tests. We go straight for diagnostic since we are at a high risk for chromosome abnormalities {husband is a carrier, and have lost 2 babies due to severe abnormalities, and 6 other losses also due to the chromosomes}.
Just an example, if something were to pop up where the dr's questioned something with their heart, and then it was later confirmed via testing or fetal echo cardiograms {I think that's what they are called, it's been 5 years}.... certain conditions require a cardiologist be present at birth. Even at the best hospitals, the cardiologist they need isn't in the hospital 24/7, so they would plan to induce at a time when they can have the dr present.
There are lots of other examples, but that's just one off the top of my head since I've literally been through that situation myself. I'm not saying EVERYONE needs an invasive test, but if the dr feels there is a call for testing, either non invasive or invasive, trust them, and go for it. It can make a huge difference in what staff is available to care for you and your baby. Also, if you happen to be carrying a baby with severe chromosome abnormalities, you are pre disposed to pre-term labor and other pregnancy complications that could be life threatening to you, not just the baby. Knowing can make a difference... I would NEVER consider termination, but knowing allows me to get the best prenatal care possible {it includes switching hospitals and dr's since my local hospital does not have a NICU, and even with life flight, it can take an hour or more to get a baby to the hospital that does... that can be a critical hour} as well as the best care for my baby, to give them every fighting chance.
To add, since it was brought up in this discussion. Spina Bifida is something that has in utero surgical options available. I know there are other conditions, but I can't think of them. This one comes to mind since a friend of mine just gave birth to a spina bifida baby. The in utero surgery was not an option for her little guy {different types} but she was able to speak to several specialists early on and discuss what options were available during pregnancy, and have a game plan in place for his surgery immediately after birth. For this, and some other conditions, knowing while pregnant can be extremely beneficial.
Genetic testing of any type is not solely about termination. It's about making sure that you are mentally prepared and that you get the absolute best care possible. Early intervention is so important for so many life threatening conditions!!!! We have the technology today to be better prepared than any generation before us, why not take advantage of it???
Hey ladies, I say this with complete respect and I'm trying to be sensitive. I respect people of all types of faith but just wanted to speak up, as a Christian.
I've noticed a bit of tension between trusting in God for everything to work out and the doubt and confusion that comes when things don't work out.
I understand fully what it's like to trust God for something and for your heart to end up broken. You question Gods love and mercy and even his existence. I've walked through that and it's awful. But that doesn't mean that God wasn't there. God mourns for us and our babies more than we do.
It's okay to get angry with him and ask him the tough questions. He can handle it and it's his desire to be the comforter in times when you don't understand.
I've personally had a miscarriage and it made me so angry with God. But he walked me through it and I trust him now more than ever. We named the baby, and their name means wisdom, because we gained so much of it. She got her miracle. She might be in heaven, but she is made whole and she is happy.
I have learned to speak life over this pregancy. I trust it will go well. But no matter what, I can say that my God is a good God and a Father who loves me more than anything.
Take God or faith out of the picture. I cannot stand, just like @CMDD mentioned in another post, how people are jumping straight towards "I'm not doing it because I'm not going to abort." Do you really think that's the main reason why women get it done? I don't know stats but I bet you the ones who do (and were put in a VERY difficult position to decide that) is a small percentage. I don't care if you do or don't but quit saying the no, because I would love him/her regardless & wouldn't abort bullshit because all of us would too!
Due 11.16.17 Baby Girl 12.9.15
MC 2.1.15 @ 5 W - Chemical MC 4.7.14 @ 21 W - Turners Syndrome
I'm going to preface this by saying, I am NOT a religious person. I do believe everything happens for a reason, and I do believe that what you put out into the world, you get back. But organized religion, nope. So if you want to, you may take what I'm about to say with a grain of salt, or you can actually pay attention to it. It's your choice....
Faith and religion have zero to do with finding out the health of your baby. Just because you find out does not mean you can't turn to your faith to get you through the results. All it means is that you can be better prepared, possibly prevent life threatening conditions to yourself during a high risk pregnancy carrying an unhealthy baby. Prevent further injury to your baby by making sure you have the proper birth plan/care in place for them. Knowing the answers, simply means that you know what you're up against. There's nothing that says once you know you can no longer "put it in God's hands" in fact, once you know, you can pray more specifically to what you truly need.
Not sure if I fully explained myself properly, maybe @cmdd can chime in if I didn't {since we seem to have similar opinions on the matter}
Also while I'm here.... yes false positives happen. That's why they have further testing available, that can be definitive. Also, personally I'd rather a false positive, end up with better care during my pregnancy, and give birth at a hospital that can handle the situation and NOT need it, than not have any testing done, and find out that due to a condition your baby has you needed to have a c-section but you gave birth vaginally and caused further injury {as an ex} or you were at a hospital that was completely unprepared for your little one and they didn't get the care they needed in time. {ignore my grammar on this long winded rant of mine hehehe}
Take God or faith out of the picture. I cannot stand, just like @CMDD mentioned in another post, how people are jumping straight towards "I'm not doing it because I'm not going to abort." Do you really think that's the main reason why women get it done? I don't know stats but I bet you the ones who do (and were put in a VERY difficult position to decide that) is a small percentage. I don't care if you do or don't but quit saying the no, because I would love him/her regardless & wouldn't abort bullshit because all of us would too!
Thank you! Well said. I guess I am the only on on this forum who will admit that openly. I will terminate pregnancy with any trisomy defect.
I worked on a grant with a woman from an organization trying to get money for its foster care training program because they were overwhelmed wth the amount of newborns whose parents chose to give them up at the hospital due to a defect or a trisomy. Many of these children will spend their entire lives in this foster care system.
Whether or not you choose to have the testing done is a personal choice, but I do believe that it is important to be honest with yourself as I stated in my previous post about what caring for a special needs child's entails. Many people do it and do a wonderful job, some just can't. And the women abandoning these children are not just crackheads and druggies. Yes these tests can yield false positives and false negatives. Each test has its own sensitivity and specificity and are Screening tests they are not diagnostic. If a concerning screen is found a diagnostic test will be recommended.
I found out during my last pregnancy that I carry the cystic fibrosis gene. The father of my son was tested and he did not have the gene so it was a relief. If both parents are carriers, there's a 1/4 chance the baby will have cf. I just had my fiance get tested (different father) just so I can be at ease if he comes back negative. I would not abort, just want piece of mind. I'm not doing any genetic testing on myself this pregnancy.
Take God or faith out of the picture. I cannot stand, just like @CMDD mentioned in another post, how people are jumping straight towards "I'm not doing it because I'm not going to abort." Do you really think that's the main reason why women get it done? I don't know stats but I bet you the ones who do (and were put in a VERY difficult position to decide that) is a small percentage. I don't care if you do or don't but quit saying the no, because I would love him/her regardless & wouldn't abort bullshit because all of us would too!
Thank you! Well said. I guess I am the only on on this forum who will admit that openly. I will terminate pregnancy with any trisomy defect.
@peevpee we let our baby go last time at 14weeks because she had 1/2 of her brain missing and the area was filled with fluid. She wouldn't have survived birth and it was the hardest decision DH and I have ever made but we decided not to put her through suffering one moment and just to let her go then. She had triploidy and my doctors later told me she was already dying in the womb. I'm still in therapy for this and don't usually tell people why we lost our baby because it's hard to understand what it's like to have to make such a f'd up decision. Every single day I wonder if I should have let myself miscarry or gone into labor only to lose her. I guess that's why it's so frustrating to me when people write that they would never do genetic testing because they'll love their child no matter what. I loved my child too and if she could have lived with half of a brain and 69 chromosomes I would have been blessed, but she couldn't.
Also, if you're out there judging me at all about what I said i'm begging you to keep it to yourself because that loss was excruciating and I cant deal with criticism around it yet. thanks.
Also, if you're out there judging me at all about what I said i'm begging you to keep it to yourself because that loss was excruciating and I cant deal with criticism around it yet. thanks.
If anyone criticizes you/judges you, especially if they post it here, they have serious issues and are hurtful mean people.
@CMDD that's such a tough decision you had to make and I'm so sorry! You did what you thought was best and no one can criticize you for that! I hope I never have to make such a hard decision. Thanks for sharing a real experience with us, I think it's good for people to understand that it doesn't mean you love your baby any less.
Also, if you're out there judging me at all about what I said i'm begging you to keep it to yourself because that loss was excruciating and I cant deal with criticism around it yet. thanks.
I'm so sorry you had to go through that. It's heartbreaking. Delivering my stillborn was absolutely traumatizing and I can't imagine the emotions you were/are going through. It's something, that during this pregnancy, that scares the shit out of me.
Due 11.16.17 Baby Girl 12.9.15
MC 2.1.15 @ 5 W - Chemical MC 4.7.14 @ 21 W - Turners Syndrome
Also, if you're out there judging me at all about what I said i'm begging you to keep it to yourself because that loss was excruciating and I cant deal with criticism around it yet. thanks.
I'm so sorry you had to go through that. It's heartbreaking. Delivering my stillborn was absolutely traumatizing and I can't imagine the emotions you were/are going through. It's something, that during this pregnancy, that scares the shit out of me.
You are so amazing to go through that and be here now. Hugs
Also, if you're out there judging me at all about what I said i'm begging you to keep it to yourself because that loss was excruciating and I cant deal with criticism around it yet. thanks.
I was taking my daughter to dance classes and met a mom who had a little girl with Down syndrome. I always talked to her and one day she broke out in tears and told me that she wished she terminated her pregnancy before the girl was born. she said she could not live with the though of what will happen to this girl after her parents die. "there will be no one else in this world left who will care for a Down syndrome adult". I did not know what to say and felt so miserable about not being able to help in any way at all. After that I cannot judge anyone for a decision like that.
Also, if you're out there judging me at all about what I said i'm begging you to keep it to yourself because that loss was excruciating and I cant deal with criticism around it yet. thanks.
@CMDD My heart is breaking for you right now. I'll admit openly that I have a very strong fear of ancephely and I think it's amazing that you are able to be open about your loss.
@peevpee I know a woman who adopted an infant whose parents didnt want to parent him due to a condition which required multiple brain surgeries and now she is of retirement age, he has outlived medical expectation by almost 40 years and now she has had to ask her adult children to take care of him when she dies, and they are happy to do it. But it is a very difficult position to be in and she is so lucky she raised such wonderful children who are willing to assume his care after she passes. He has had upwards of 25 brain surgeries in his life. A lot of marriages do not survive, hers did not.
There are also SO MANY examples of people who have children with Down Syndrome who view their children as a blessing and wouldn't have it any other way. I have a good friend whose older brother has Downs and she thinks he's the best thing that ever happened to her. No one is twisting her arm about taking care of him when her parents are gone. As a matter of fact she takes major offense when anyone tells her that she's "such an angel" or "so patient" Her brother is an amazing, talented person and he has shaped her life in so many ways. She is now a Special Ed teacher and has 3 kids of her own. Although she is exhausted most of the time she is probably the happiest person I have ever met. Besides her brother!
Re: To do genetic testing or not?
But if it comes down to amniocentesis? No way. That could harm my baby.
I don't want my baby to have any additional pain or challenges in his or her life. But I'll love my child regardless. A scan won't change anything.
Jamie
Me:34 DH:41 1 son: 6 2 step sons: 18, 12
BFP: 4/24/08 - Missed Miscarriage found 5/29/08
BFP: 11/21/08 - DS born 7/13/09
BFP:5/8/14 - Chemical pregnancy
BFP: 4/11/15....stick baby stick!!!
I understand the abortion debate, but it didn't really affect our decision, and I kind of wish it had not been brought up. We are Christians, very pro-life and would never terminate. However we didn't decide against first trimester testing because of a "termination" option, and we don't feel as though we are failing to trust in God by undergoing standards genetic tests at 20 weeks. We simply believe the baby is a gift and are trying to make what we feel are the best decisions for baby. If I was personally asked for advice on testing, I would probably advise against first trimester testing based upon my research, but I wouldn't judge someone who made a different decision. I would say congrats to those with positive news (and know the gender - slightly jealous!!!) and I would pray and mourn with/for those who received bad news. I agree that it can be a little insulting to insinuate (intentionally or otherwise) that a person must be considering abortion as an option if the baby isn't "perfect" when many people want reassurance or time to prepare.
I do feel this a personal decision, and everyone should do their own research and discuss all tests with a provider. I hope you all make the right decisions for your family and that you all experience a peace of mind in your decisions.
I was initially freaked out when I went online and saw that my insurance company hasn't processed my claims yet for the previous genetic testing I had done. I think my claims will end up denied due to lack of medical necessity - no family history. I called Progenity and received the same information as @kyleneum13. If my insurance company denies, they are only going to bill me 99.00 while they appeal through my insurance. They call it their peace of mind program. I was really worried there for a few minutes, one test was over 6k and another was over 4k. They assured me the most I would be billed was 99.00.
I've noticed a bit of tension between trusting in God for everything to work out and the doubt and confusion that comes when things don't work out.
I understand fully what it's like to trust God for something and for your heart to end up broken. You question Gods love and mercy and even his existence. I've walked through that and it's awful. But that doesn't mean that God wasn't there. God mourns for us and our babies more than we do.
It's okay to get angry with him and ask him the tough questions. He can handle it and it's his desire to be the comforter in times when you don't understand.
I've personally had a miscarriage and it made me so angry with God. But he walked me through it and I trust him now more than ever. We named the baby, and their name means wisdom, because we gained so much of it. She got her miracle. She might be in heaven, but she is made whole and she is happy.
I have learned to speak life over this pregancy. I trust it will go well. But no matter what, I can say that my God is a good God and a Father who loves me more than anything.
Anyway, I hope it's okay that I said all that.
Baby Girl 12.9.15
MC 4.7.14 @ 21 W - Turners Syndrome
I guess I am the only on on this forum who will admit that openly. I will terminate pregnancy with any trisomy defect.
Whether or not you choose to have the testing done is a personal choice, but I do believe that it is important to be honest with yourself as I stated in my previous post about what caring for a special needs child's entails. Many people do it and do a wonderful job, some just can't. And the women abandoning these children are not just crackheads and druggies. Yes these tests can yield false positives and false negatives. Each test has its own sensitivity and specificity and are Screening tests they are not diagnostic. If a concerning screen is found a diagnostic test will be recommended.
I'm so sorry you had to go through that. It's heartbreaking. Delivering my stillborn was absolutely traumatizing and I can't imagine the emotions you were/are going through. It's something, that during this pregnancy, that scares the shit out of me.
Baby Girl 12.9.15
MC 4.7.14 @ 21 W - Turners Syndrome
Baby Girl 12.9.15
MC 4.7.14 @ 21 W - Turners Syndrome