I have recently found out that we are expecting another baby. I am 41 years old, so it is a little scary. Andrew (my bpi baby) just turned 3. My question is regarding CVS testing and amniocentesis.
Since I am so old (sigh), I am thinking I would like to have some testing done. I didn't have any done with my last pregnancy, but i am considering it this time. I would never consider terminating the pregnancy for any reason, but I would rather not spend the entire pregnancy wondering if there is a problem such as Down's syndrome. I would rather be prepared.
Has anyone had the CVS testing or Amniocentesis done? In my research, the only advantage I can find for the CVS testing is that it can be done earlier. Because I would not terminate the pregnancy anyway, I am leaning toward just doing the amniocentesis a little later.
Does anyone have any other information or thoughts on the differences between the two tests?
I'm not looking forward to the decisions I am going to have to make regarding the delivery of this baby. It will be my 6th baby. My first 2 were c-section, my next 3 were vaginal deliveries with the last one being injured (He was 10 lb 9 oz.) I am leaning toward a planned c-section. I haven't been to see the doctor yet. This was a little bit of a shock, so we are still trying to figure it all out.
Thanks all of you for your support and help.
Connie
pregnancy advice
Re: pregnancy advice
Hi Connie - I had CVS done for Maia because I have a genetic issue that I wanted to test Maia for - had she been found with that specific gene it could have been treated in utero and cured. And the treatment had to be done very early on - so doing CVS at 11 weeks was a GREAT PLUS.
I did some research on the centers and the fail rates and found a center that had a low fail rate .5% versus 2%. It was a specialty neonatology group at a high risk hospital who did only this, ultrasounds and amnios all day long. That made me feel better.
They did genetic counseling in advance - asked many questions of me and my husband to gather all the data.
They used ultrasound to guide the needle. And my placenta was in the back of my uterus. They basically just siphen out some of the fluid and placental cells in a small tube and then you are done.
I had cramping that started about an hour later and into the night - felt a heaviness and I stayed on my back for about 24 hours and then just rested a bit more each day for a couple more days.
It did not hurt. The initial needle puncture was like any other needle would be. I was very scared but I really didn't feel anything past the first needle stick. I made my husband come with me so he could watch it. I figured if "I" had to get it...then the least he could do was "watch" it. I think he had a worse time of it than me! LOL Honestly had I not read the report two weeks later I never would have suspected or known how long the needle was - just don't look ok?
So my personal opinion is that I think CVS is a better deal if you find an anomaly that can be helped in utero at an early stage.
Good luck and Congratulations!!!
-francine
I did some research on the centers and the fail rates and found a center that had a low fail rate .5% versus 2%. It was a specialty neonatology group at a high risk hospital who did only this, ultrasounds and amnios all day long. That made me feel better.
They did genetic counseling in advance - asked many questions of me and my husband to gather all the data.
They used ultrasound to guide the needle. And my placenta was in the back of my uterus. They basically just siphen out some of the fluid and placental cells in a small tube and then you are done.
I had cramping that started about an hour later and into the night - felt a heaviness and I stayed on my back for about 24 hours and then just rested a bit more each day for a couple more days.
It did not hurt. The initial needle puncture was like any other needle would be. I was very scared but I really didn't feel anything past the first needle stick. I made my husband come with me so he could watch it. I figured if "I" had to get it...then the least he could do was "watch" it. I think he had a worse time of it than me! LOL Honestly had I not read the report two weeks later I never would have suspected or known how long the needle was - just don't look ok?
So my personal opinion is that I think CVS is a better deal if you find an anomaly that can be helped in utero at an early stage.
Good luck and Congratulations!!!
-francine
Re: pregnancy advice
Connie - ask your doctor if you have any specific risks that would make this procedure more high risk for you and the baby.
-
Cara
- Posts: 497
- Joined: Mon Nov 05, 2001 9:34 pm
- Injury Description, Date, extent, surgical intervention etc: My oldest daughter suffered a LOBPI. We were sent home form the hospital without being told anything was wrong. She had nerve graft surgery at one year of age, tendon transfer and release at 3 1/2 yrs of age.
- Location: Indiana
Re: pregnancy advice
Congrats! You are not old. My mom was 42 almost 43 when I was born. I am 28 so I know the testing is different but my mom had false results on her test and it caused a lot of anguish for nothing. My AFP test was abnormal with my daughter. We went through several ultrasounds. We decided against an amnio because fo the risk to the baby. We were also of the mindset that nothing would cause us abort. If our last ultrasound would not have been clear (about 85%) we would have done the amnio so we would have known if we needed to go to Riley's or not for delivery. It is a personal decision. I wish you the best of luck! (PS my mom watches my daughter while I am at work and is an active grandma now) 
Re: pregnancy advice
I just never did it because I figured I would deal with whatever life dealt out...Plus I knew a woman once who had the tests and they said something was wrong with the baby she almost aborted the baby but after much soul searching she decided not to and the baby was born perfect and normal in every way!!! Too scarry!!! Good luck on your pregnancy!!! I hope and pray you will get better care this time!!! I did the next time around!!!
T.
T.
-
jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: pregnancy advice
I was 40 when I had my youngest, who's now 4. I was worried about chromosonal abnormalities and like you would have refused a termination on grounds of disability (I have a bpi so I would never dream of it!) but it was a huge worry to me. Because of the risks I decided against CVS or amnio, but I had the usual triple test and the advanced ultrasound testing of the nuchal membrane which is only 80% accurate but not invasive, you need a specialised ultrasound operator to do it. Tests were all fine but I have to tell you I spent the whole last trimester worrying about it..parenting isn't easy one handed and I worried how I might cope with a disabled child.
My fears increased towards the time of the birth, as did my general fear and distrust of the medical profession-my previous birth had been quite traumatic (shoulder dystocia, thankfully resolved but as all you guys know not the most wonderful experience) and having found out how events in early labour had probably contributed to the SD I was reluctant to allow anyone near me when I was in labour....my age meant that they were very keen on monitoring the contractions and as that was one of the factors that I felt had contributed to the SD (because it meant me lying on my back and not moving around) I refused to let them do it, then felt very guilty in case there WAS something wrong which the monitoring would have showed.
In the end my daughter was born with the midwives only present in the room as she actually emerged-I made them stay outside through the whole labour to avoid any interventions/interference and my husband let them in only when he felt unable to cope by himself-poor Peter!
Ella was absolutely fine and perfect in every way-but I was completely unable to bond with her until she'd been checked out by a paediatrician because of my fear that she would have some abnormality I wouldn't be able to deal with. The tests would at least have removed that fear.
Sorry to have rambled on, but to me, what started in early pregnancy as a simple enough decision-invasive testing vs wait and see-ended in exteme anxiety through uncertainty and definitely had a negative effect on my birthing experience and Ella's too-with my previous babies I'd had skin to skin contact from minute one and I felt Ella missed out. It was only about half an hour until I felt comfortable holding and feeding her but it seemed like aeons. The midwives were very supportive of my decision to give birth alone and unattended (altho they hung about outside the door asking Pete for progress reports and I think would have forcibly entered if anything had started to go wrong) and if I had to do it all again I STILL wouldn't know whether to have the invasive tests or not. I truly appreciate the diffult decision you are making, and maybe you won't get as worked up about it as I did-I'm afraid it was a case of 'too much knowledge is a bad thing'-I'd researched various disorders and abnormalities and frankly could think of nothing else. They even noted this in my records-'mother extremely anxious' hahaa that was putting it mildly! Pregnancy does funny things to you, normally I'm pretty rational....
All the best Connie, whatever your decision, and keep us posted. :0)
My fears increased towards the time of the birth, as did my general fear and distrust of the medical profession-my previous birth had been quite traumatic (shoulder dystocia, thankfully resolved but as all you guys know not the most wonderful experience) and having found out how events in early labour had probably contributed to the SD I was reluctant to allow anyone near me when I was in labour....my age meant that they were very keen on monitoring the contractions and as that was one of the factors that I felt had contributed to the SD (because it meant me lying on my back and not moving around) I refused to let them do it, then felt very guilty in case there WAS something wrong which the monitoring would have showed.
In the end my daughter was born with the midwives only present in the room as she actually emerged-I made them stay outside through the whole labour to avoid any interventions/interference and my husband let them in only when he felt unable to cope by himself-poor Peter!
Ella was absolutely fine and perfect in every way-but I was completely unable to bond with her until she'd been checked out by a paediatrician because of my fear that she would have some abnormality I wouldn't be able to deal with. The tests would at least have removed that fear.
Sorry to have rambled on, but to me, what started in early pregnancy as a simple enough decision-invasive testing vs wait and see-ended in exteme anxiety through uncertainty and definitely had a negative effect on my birthing experience and Ella's too-with my previous babies I'd had skin to skin contact from minute one and I felt Ella missed out. It was only about half an hour until I felt comfortable holding and feeding her but it seemed like aeons. The midwives were very supportive of my decision to give birth alone and unattended (altho they hung about outside the door asking Pete for progress reports and I think would have forcibly entered if anything had started to go wrong) and if I had to do it all again I STILL wouldn't know whether to have the invasive tests or not. I truly appreciate the diffult decision you are making, and maybe you won't get as worked up about it as I did-I'm afraid it was a case of 'too much knowledge is a bad thing'-I'd researched various disorders and abnormalities and frankly could think of nothing else. They even noted this in my records-'mother extremely anxious' hahaa that was putting it mildly! Pregnancy does funny things to you, normally I'm pretty rational....
All the best Connie, whatever your decision, and keep us posted. :0)
Re: pregnancy advice
Connie:
Well, congrats!!! Number 6....my hat is off to you!!
I have four, and have hit my limit!
I had amnio with my 4th (who is also the bpi). I was 36/37 and it is standard around here to do amnio starting then. We did not really have any strong genetic reason for doing it, just age. I don't know what I would have done with the info, to be honest. My husband and I just assumed it would say that all is okay. It was not really difficult. I did not have any cramping afterward, some do. I think that the more nervous you are, the worse the effects seem to be. I was so positive that all would be fine that I skipped out of there. I seriously considered not doing it, too.
It is also a llllloooooonnnnnnngggggg needle, and they encouraged me to NOT look at them as they put it in. They said that they didn't want me to flinch, even though it didn't hurt. They said that it was a natural response. So, I didn't look.
I hope it helps. Remember, only you and your husband can make a decision like this. Do what makes you feel best. Oh, but I would go for that scheduled c-section...no doubt about that!!!
claudia
Well, congrats!!! Number 6....my hat is off to you!!
I have four, and have hit my limit!
I had amnio with my 4th (who is also the bpi). I was 36/37 and it is standard around here to do amnio starting then. We did not really have any strong genetic reason for doing it, just age. I don't know what I would have done with the info, to be honest. My husband and I just assumed it would say that all is okay. It was not really difficult. I did not have any cramping afterward, some do. I think that the more nervous you are, the worse the effects seem to be. I was so positive that all would be fine that I skipped out of there. I seriously considered not doing it, too.
It is also a llllloooooonnnnnnngggggg needle, and they encouraged me to NOT look at them as they put it in. They said that they didn't want me to flinch, even though it didn't hurt. They said that it was a natural response. So, I didn't look.
I hope it helps. Remember, only you and your husband can make a decision like this. Do what makes you feel best. Oh, but I would go for that scheduled c-section...no doubt about that!!!
claudia
-
marymom
- Posts: 692
- Joined: Mon Nov 05, 2001 5:05 pm
- Injury Description, Date, extent, surgical intervention etc: Teen aged home birthed son with OBPI
- Location: Fort Pierce, FL
Re: pregnancy advice
~*~*~*~*~*congrats~*wahooooo~*~*~*~*~*~*~*~*
The only reason I would consider ever recommending the tests were if the mum wanted to take action on the results, the tests themselves have risk factors and are not always accurate,
The biggest risk in my opinion are the stress related ones associated with inacuracy, -
either way, chances are everything will go wonderfully so, bestof blessings to you and your decision,
The only reason I would consider ever recommending the tests were if the mum wanted to take action on the results, the tests themselves have risk factors and are not always accurate,
The biggest risk in my opinion are the stress related ones associated with inacuracy, -
either way, chances are everything will go wonderfully so, bestof blessings to you and your decision,
-
Karen Hillyer
- Posts: 562
- Joined: Fri Sep 06, 2002 1:36 pm
Re: pregnancy advice
Hi Connie
Congratulations on your lovely news
I'm with Jenny and Mary on this issue, when I was pregnant with our MUCH wanted 1st child ( 6 yrs fertility treatment etc) in 1990, I had the triple blood test which is standard over here, and it came back that I had a higher than expected chance of having a downs baby although I was only 28
I went to see the ob/gyn who had booked an amnio test for me ( I was 17 weeks pregnant) he explained that I had a 1 in 274 chance of having a downs baby and that the amnio would give us a definite answer. He also explained that I had a 1 in 100 chance of miscarrying after the amnio. For us, we decided that we wanted the baby no matter what, so we didn't have the amnio.
I spent the rest of my pregnancy worrying that he would have Downs. But I knew I couldn't have aborted him. Now as Jenny says, there is much more sophisticated forms of ultrasound available which can spot the excess skin around the Nuchal sac, which although it isn't 100% accurate involves no risk to either baby or Mother.
Perhaps you could start with these non-invasive tests and if necessary progress to an amnio if the blood test and/or scan prove that you have an increased risk of Downs.
Michael was born at 42 weeks and didn't have Downs.
Good luck
Congratulations on your lovely news
I'm with Jenny and Mary on this issue, when I was pregnant with our MUCH wanted 1st child ( 6 yrs fertility treatment etc) in 1990, I had the triple blood test which is standard over here, and it came back that I had a higher than expected chance of having a downs baby although I was only 28
I went to see the ob/gyn who had booked an amnio test for me ( I was 17 weeks pregnant) he explained that I had a 1 in 274 chance of having a downs baby and that the amnio would give us a definite answer. He also explained that I had a 1 in 100 chance of miscarrying after the amnio. For us, we decided that we wanted the baby no matter what, so we didn't have the amnio.
I spent the rest of my pregnancy worrying that he would have Downs. But I knew I couldn't have aborted him. Now as Jenny says, there is much more sophisticated forms of ultrasound available which can spot the excess skin around the Nuchal sac, which although it isn't 100% accurate involves no risk to either baby or Mother.
Perhaps you could start with these non-invasive tests and if necessary progress to an amnio if the blood test and/or scan prove that you have an increased risk of Downs.
Michael was born at 42 weeks and didn't have Downs.
Good luck
Re: pregnancy advice
With respect for all that all of you have posted here, I want to add here that the fail rate of an amnio and CVS test really are based on the center itself. If you went to a center that specialized in this, then your fail rate would be extremely low. You need to ask for the statistics of the center (and of the doctor) itself (himself).
Many of you have been connecting having these tests with the termination of a pregnancy. I want to add that I would never personally terminate a pregnancy however, I felt that there was great value in finding out if Maia had the same genetic issue as I have (Cushings Syndrome) because it could have been 'fixed' in utero within a two week period with the administration of drug therapy.
Technology in this field is becoming highly specialized. They are able to do in utero surgeries for things that might normally kill a baby or cause a baby a lowered quality of life.
Of course everyone does things that they are comfortable with. I guess I'm just asking all of you to view these tests from a different angle.
-francine
Many of you have been connecting having these tests with the termination of a pregnancy. I want to add that I would never personally terminate a pregnancy however, I felt that there was great value in finding out if Maia had the same genetic issue as I have (Cushings Syndrome) because it could have been 'fixed' in utero within a two week period with the administration of drug therapy.
Technology in this field is becoming highly specialized. They are able to do in utero surgeries for things that might normally kill a baby or cause a baby a lowered quality of life.
Of course everyone does things that they are comfortable with. I guess I'm just asking all of you to view these tests from a different angle.
-francine