Advice on Pregnancy Screenings & Tests

A.,
I did the CVS test two years ago at 13 weeks pregnant, at the first reproductive genetics place in Chicago, with Dr. Norman Ginsberg. I can't recall the name of the place, but it was on Clark or Halsted in the Lincoln Park area. Looking back, I wish I had not done it. Not only was it oddly painful, (I had twins, so they had to go through my abdomen three times to get a sample, as the first time, one of the boys was kicking too much and they needed to get the needle out of the way), but for the rest of the pregnancy I had could still feel pains radiating from the needle puncture site and strange bladder pains. I subsequently went into early labor at 22 weeks, which they term as "late-term miscarriage". Both the babies were born alive at 22 weeks, and were genetically healthy, but could not survive. I can't blame the CVS test entirely because I had some other complications with my body, but looking back, it certainly could have played a role in my outcome.

Also, I think you have to decide if you would terminate a pregnancy if you knew something were wrong. For us, the nuchal translucency was thick on both boys and while we would not have terminated the pregnancy, we wanted to be prepared for the worst in case we were going to have two challenging situations. Luckily, they were perfect — even in their short life. If your nuchal ultrasound looks good, have faith that things will work out fine.

That said, I'm not an older mom. I'm 32, but have had 6 miscarriages, (including the early birth and death of my twin boys). And I just went through my 1st round of I.V.F. after 5 rounds of IUI. Waiting on those results... I think that qualifies me in some way, right?!! (Amusement is absolutely necessary during these times!)

Good luck with your decision process.
Shine on!
L.

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Hi A., lots of good advice given by other mom's so I'll just add one piece of advice from my experience (just had my first in July at 38)!!

I had the Nuchal Translucency test done at 11 weeks and was prepared to do a CVS, however, my NT results came back very very favorable, so we decided not to do anything invasive.

What I did discover though is that if you contact the hospital or medical center, you can get the rate of miscarriages or what may be called "counter results" for the SPECIFIC hospital and sometime SPECIFIC technican you are seeing for any of your invasive tests.

The center scheduled to do my CVS, had we had it done had a "counter resutls" rate of 1:900. That's a heck of a lot different from the 1:200 the odds state for CVS...

Moral of the story, do your own research, ask questions and be your own best advocate for your family! Good luck!

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What kind of tests did you want? I just had my third child at 40. I had the standard stage II ultrasound to look for any abnormalities that could be corrected in the womb, but I turned down any tests that would detect down syndrome or something of that nature. I had two miscarriages after my first two pregnancies and I just wanted to have that third child. If it makes you nervous the miscarriage rate of the procedures and they can only detect abnormalities that can't be corrected, then why do the tests?

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It sounds like you had a rough road to your pregnancy. Why take these tests and risk unnecessary harm to your little one? I just had my last 3 kids after 35, which is cosidered "elderly" according to my doctor. I chose not to have the CVS or amnio with both pregnancies. I wouldn't have terminated the twins or the singleton regardless of what the tests showed. I did, however, have the triple screen blood test done which is not 100%, but it is pretty reliable and poses no risk to the pregnancy. Luckily it came back normal both times. I had made the decision ahead of time that, if it came back indicating a problem, I would not do any further invasive testing but I would educate myself on whatever condition was possible. I wanted to be prepared for any problem but I didn't want to be the cause of any problem. There were enough other things for me to worry about during pregnancy. I didn't need to add anything else to my plate.

My Ob-Gyn is at Highland Park Hospital and I LOVE her. She has young kids of her own, so pregnancy is not far from her memory. She provides good information and helps you make the best decision FOR YOU. They also do Level II ultrasounds on all "elderly" moms which will tell you if there are any problems, such as Down Syndrome. They measure every part of the baby to look for abnormalities. If you want her name, let me know.

Good luck!

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My sister is almost 40 and the recommended that she do an amniocentesis but chose not to do it because of the risks involved. When I was 22 I was pregnant with my son and had an alfafetoprotien test done- it is routine. But you can choose not to do it. It came back high So they had me do an amnio. But This was when I didn't know you could say NO to the dictor. About a month after my test at around 5 months gestation I started bleeding and was diagnosed with placenta previa. The intrusion could have caused the placenta not to move up to where it was supposed to be. I was on bedrest and I have a happy healthy 7 yr old boy now. If I could go back I wouldn't do it. As my sister said there are risks that your baby could have downs or something else but she said even if the test said yes she would still keep the baby so what is the point of doing the test. She didn't want to take the risks just so she could "find out" for sure.

A.,

Congratulations! I had my son at 39 and my daughter at 41 after many years of trying, surgery, tests, accupuncture, and 3 miscarriages. Throughout my pregnancies I saw my regular ob/gyn and a maternal and fetal specialist. The specialist, Dr. Jude R. Duval, talked to me about each test and whether he thought there were any factors from ultrasound findings and blood tests that would indicate the need for any invasive testing. I only needed an amnio at 36 weeks for both pregnancies to check for lung function. But, if Dr. Duval had thought it necessary to have one earlier, I would have. He is very thorough and makes sure you understand what is going on and why they are doing what they are doing. I was at Sherman Hospital in Elgin. I know Dr. Duval is affiliated with other hospitals and has other offices. Good luck!

Congrats on your pregnancy!

Amnio and CVS carry risks of miscarriage- I believe amnio is 1/200 and CVS I am not sure about. So one thing prior to having these tests is to ask yourself what the value is in having the tests- would you terminate your pregnancy? Or are you doing it just to have the knowledge? It's up to you, but depending on the information you gain, these tests may not be a good fit- or they might be. Often you can gain the same information with ultrasound and then verify with amnio later if you need to- CVS must be performed early in pregnancy.

As for where to have them- I would recommend a major academic medical center. The providers there would have the most experience performing the tests, the most current research and practice guidelines. I used to work at Northwestern (Prentice) and they do a lot of this sort of procedure with good results. I am currently working at a small community hospital and there is a big difference in how they practice.

The risk of problems with baby do increase with age but not exponentially, just gradually. 35 was chosen as the cut-off but there is no huge jump from them to your age now, just a gradual climb. Good luck with everything.

im not an older mom but i did have to have an amniocentesis. it is a good thing. i had to have it to make sure that my daughters lungs we developed so she could be delived early do to a kidney problem she has. i will not surgar coat it the amniocentesis is kinda painful. but they can learn a lot with this test. the earlyer u have it the more risk there is for a miscarrige. for me it was a good thing my little one was born at 39 weeks. she ahs had 2 surgerys for her kidneys but she is almost 4 months and doing good. how this help

Hello A.,
I was in my mid-30s when I had my kids, so I did amnios for both. I did amnios instead of CVS because at that time, amnio was slightly safer for the baby. That may have changed- there is so much advancement in prenatal care that 7 years ago may be old news.
I would go to Northwestern if I were you, and find a very experienced CVS / amnio practitioner. I called and asked for the number of times each practitioner had done amnio. (I didn't ask about the times for CVS because I had decided against it.) The person I settled on, Dr. Tomura, had done amnio about 10,000 times, so I was happy with that.( I am looking at my notes from that time as I write this!) He was excellent. Maybe he is still there!
These facts were true when I was pregnant: you find out results for CVS soon after the test is done at around 11 weeks, but you find out amnio results after 15 weeks, when amnio is generally done. The death rate for CVS is higher than that for amnio because the doctor cuts out a small piece of the material the fetus is living in (I forget when it transitions from 'embyro' to 'fetus.') Amniotic fluid develops later than helpful for the CVS timeframe, so that is why they don't use it. Amnio is slightly safer because only fluid is taken out through a small needle, and the actual flesh material inside the womb is left intact.
So if the data about amnio and CVS are the same now as they were in 2001 and 2002, and you are mostly afraid of fetal death, choose amnio. If you want to find out as soon as possible so that you can terminate as soon as possible if you need/want to, choose the speed of CVS. I knew I would abort even at 15/16 weeks if the results were poor, and I wanted to decrease the chances that the test would hurt the baby. So amnio was right for me. But I was in my mid-thirties, therefore time was not quite as much as an issue for me as it is for you. I felt I could wait a month (difference between knowledge of the results) to know.
My friend, however, was 41. So she did CVS, wanting to give herself time to start over again quickly in case she had to terminate a poor result (sorry for the euphemism- it just sounds better! By the way, everything was normal for her.) So if the relative safety data on these two procedures remains true after almost 7 years, then I have given you good advice. If the technologies have jumped ahead, then disregard almost everything. Even if I am right, you should find it all out for yourself by doing A LOT of research on the issue. Call hospitals, visit hospital education centers (Northwestern has one) and ask tons of questions. I went to a genetics counselor, which was fascinating and helpful. You can get stories and opinions all over the place, but they do not substitute for your own education.
GOOD LUCK in this hard decision!~ Sasha

When I was pregnant at 40, my doctor was very open and honest. My doctor and I sat down and talked long and hard before she ordered any tests. Was I at more risk as a 40 year old, non smoker, light social drinker than say a 20 year old smoker? Age isn't always the best gage. She only recommended those tests that had minimal risk involved, i.e. blood tests and ultrasounds. With CVS and amnio there are risks involved and a high risk of false positive. Also, even if a test came back with a "possible defect" by the time those tests can be done you are really invested in this child. Would you seriously consider taking really drastic steps if you did get such a result? Or would you worry and stress about something that isn't even real? But, conversly, would you be so worried without these tests that you would make yourself insane? I would strongly suggest that before you take any tests you think about what you would do with the results anyway. And, don't let anyone talk you into anything that you aren't comfortable with. I wish you well on a wonderful journey.

I guess I would ask, what do you want from these results? Do you need to know? Would you terminate? I only opted for the test that tested for????I am drawing a blank...it tested for a disorder that they could do inutero surgery to correct...otherwise I did not need to know.

Good luck..I know it is scary

Please know that I am not meaning to be judgmental with my statements; I think every family has to carefully consider their own personal situation and weigh their options. What one family does may not be the same as another family, and that's okay.

Would finding out that your baby has some sort of medical issue or challenge change the course of your pregnancy? If you're okay with the idea of having a special needs baby then is there really a reason to test? Of course, some people want to know ahead of time so they can learn more about raising a child with special needs and educating themselves on how to best help their child and I understand that completely.

A.,
I had CVS done at 10 weeks during my second pregnancy. I was 36 when I had my daughter (she came 5 weeks early) The proceedure itself has some discomfort but is over very quickly. I saw a specialist by the name of Norman Ginsberg, he has offices in Chicago and Northbrook. We had the results within days unlike waiting for amnio results which can take up to 2 weeks. It is my understanding that the percentage of miscarriage due to CVS in comparable to amnio. I was very pleased with the proceedure and liked it because we were able to do it at week 10 of my pregnancy. You may want to ask your OB about doing a Transnuchal Ultransound in conjunction with the blood work. I believe it is done at 11-13 weeks and is non invasive like CVS and amnio. I have a few friends that have chosen this proceedure and were pleased with it. Good luck with your baby.

I would recommend talking to your OB. When I was pregnant with my first, my OB was really against doing amnio and/or cvs. Her perspective was that a level II ultrasound catches just as much, and provides the necessary notice for delivering at a special hospital, etc.

My thought is that it doesn't make sense to put yourself through the trauma of an amnio/cvs unless you absolutely have to. And with ultrasound technology being what it is today, chances are you won't have to.

I think it really depends on what you would do with the information. For me it didn't matter if my baby had any type of health issues - I wasn't going to terminate the pregnancy so the right decision for me was to not take the risk. I also figured if there was something wrong with my baby, I would be able to figure things out/learn as much as I could after s/he arrived. We have a very large and close family and so many friends so with that network of support, anything was possible. (Again, my own personal experience and reasoning.)

You have to do what's best for you and your family and you're the only one who can make that decision. Consider that each pregnancy is different and just because your daughter was early doesn't mean this baby will be. Just because your last pregnancy ended in miscarriage (I'm so sorry to hear about that!!) doesn't mean this one isn't going to be healthy.

I went into labor at 26 weeks and again at 27 weeks with my first and thankfully they were able to stop it. I was on bedrest for 10 weeks and our perfectly healthy, 7 pound "jumbo-shrimp" son was born at 35.5 weeks. They put him in the NICU for an hour for observation and then booted him out for being too healthy. This pregnancy I started 17-P shots at week 18. I'll be 37 weeks on Sunday so the shots have done their job so far (in terms of reducing my risk of preterm labor.) If this is an option for you, it may help keep that baby in there cooking a little longer.

Good luck to you whatever you decide and here's hoping you have a happy, stress free pregnancy with a beautiful healthy baby when it's all done. Take care of yourself!!

A.,

I was 37 when I had my little one. My midwives sent me to Dr. Pergament in Chicago...affiliated with Northwestern. I initially did the first trimester screening you have heard some women mention in their replies. It is a simple blood test & ultra sound. Based on those results, the doctor will advise you if further testing is necessary. Later when I received my results from the Triple Screen test, I had a false positive. The midwives sent my test results to Dr. Pergament. Combining all the results showed that my risk of any problems was actually quite low. I never did any invasive testing. I have a very healthy little boy right now!

Hi A.,
Congratulations on the pregnancy. I am also 42 and 4 weeks pregnant. I had my first child at 41 and love being a mother. As a mother and nurse midwife, my question for you is what would you do with the information from an amnio or CVS? Fortunately now there are non-invasive tests done at 11-13 weeks, including blood and an U/s that screens for chromosomal abnormalities. Your ob would know and refer you for these. I had the 11-13 weeks non-invasive screening with my daughter and plan to do the same with this pregnancy. I would not terminate the pregnancy,, therefore I am not willing to take the risk of a losing the baby from the procedure. Each child is a precious child from God

I have never had any kind of genetic screaning done (terminating was never an option for my husband and me, so to test and increase our risk of miscarrying didn't seem reasonable), but I do have friends who have. What I do know (that many people aren't aware of) is that you can often get an inaccurate result. In 2 instances, my friends' results came back abnormal. In both cases, the doctors said that the children would have severe mental/physical abnormailities, and with one woman, the doctor even recommended terminating the pregnancy. Both of my friends carried to term and, low and behold, delivered perfect, healthy babies. Just last year, a co-worker had bloodwork done and she tested positive for one of the trisomy (i.e. Downs Syndrom) markers. She scheduled a CVS, and the day she went in to have the procedure done (after days of making herself sick with worry), her doctor asked to repeat the blood test due to some lab errors they just discovered with other women. She agreed, and these blood tests came back normal. She was upset to think that she may have done the CVS and possibly miscarried all because of a lab error. When all is said and done, the decision of whether or not to do genetic screening is a very personal one that's up to each couple. I just wanted to make sure that you knew that these tests, by no means, are a garauntee either way on whether or not your child will be "normal" or not. You just have to weigh the risks and benefits. Good luck!

Hmmmmm, this is a tough one for me! I had the blood test (not sure on the name of it) that determines the risk of the baby having DS and a few other problems. It came back with a 1:under 20 chance of her having DS. I was petrified. The Dr suggested an Amnio and I made the appt.

I came home and did some research about it and was horrified at the risks! I looked into doing the 4D ultrasound then but my insurance would not cover it so that was not an option for our budget. This pregnancy was a HUGE surprise after being told when I had cancer I would not be able to have more children and my son was 17 at the time! So while she was unplanned and not in our budget she was a welcome surprise!

Anyhow, after doing all the research and talking several times to the Dr I went ahead and did the amnio. Up until the minute he put the needle in me I was unsure what I would do with the results... you know what the options are! Well, as soon as he put it in me I knew that no matter what I would keep her since God obviously blessed us for a reason! I stopped worrying immediately and decided though that if we got news that she did have DS that I would educate myself, get better Drs for when she was born and prepare myself for what could be. Everything came back normal and the best thing was we found out 100% certain that she was a girl!

So I guess what I am saying is, unless you are considering terminating or that there is a high risk of your child having DS or other problems and you want to educate yourself to what your future may hold, I would not even risk the test. I wish I would have known my decision 2 minutes before hand! Also with you being at risk of having a preemie I would probably not consider it!

Also, 6 weeks before her due date we were going to do an amnio later in the week to determine lung function since I threatened to cut her out myself if the Dr did not... we knew she was breech and was literally stuck in my pelvis so I knew she was coming out this way whether he did it or I did! lol I look back now and laugh.... but at that time I was in soooooooo much excruciating pain- turned out to be 3 days of back labor! The next night my water broke and it saved me from doing the test. I had an 8 pound six week preemie! So if it is near the end of your pregnancy or the Dr is concerned I think this would be the only time that I would consider it if I was to go through it again!

Whatever you decide I wish you the best of luck and many blessings to you and your child!

I have had both and highly recommend the CVS. I had fertility issues and a successful IUI. At 34, I conceived thru IUI but miscarried at 20 weeks due to Down Syndrome (other problems as well). Keep thinking that I should have had it done-would have been able to prepare and perhaps would not have been blindsided. Somehow, the medical incredible happened-without fertility and without us trying, we conceievd again a year later. I did lots of research and found Dr. Verp at Univ of Chicago. http://www.uchospitals.edu/physicians/marion-verp.html
She is/was wonderful and I highly recommend her!! If you want any more info, feel free to email me at ____@____.com

Good luck!

Hi A.-

I highly recommend Dr. Lee Shulman in the Reproductive Genetics department at Northwestern Memorial. All he does is amnio and CVS. He was involved in the first clinical trials of CVS, so he has more experience than anyone in the area. He successfully performed CVS for two of my 40-something friends, both of whom had gotten pregnant after extensive fertility treatments. He is very conservative in his approach so he has a very low miscarriage rate. I originally went to him for CVS, but he felt that my placenta was "too thin" and performing the procedure would put the fetus at needless risk. So, he had me come back a few weeks later and did amnio. I would suggest getting CVS if you can, as it can be done as early a 10 weeks, rather than waiting for an amnio at 15 weeks. You may read that CVS has a higher miscarriage rate than amnio, but my understanding is that if you look at more recent data, the risk of CVS has fallen a lot in the last 5 years. It's a relatively new procedure, and as the doctors have gotten better at performing it, the loss rates have dropped to be equivalent to amnio.

Good luck! E.

Because I was 35, I could and did get the CVS. You do want to be in the 12th week of pregnancy to avoid any substantial risk (late 11th week through 12th) then the window closes. Personally, we didn't want to wait for the amnio in case we had any painful decisions to make.
I saw Dr. Marilyn Frederickson out of Northwestern Hospital downtown. She was described to me as "cold" but I found her to be exactly what was needed: a smart doc who does a hard job.
You go to her office and waaaaaaait then you speak with her and cover any questions. Then you go into another room, laboratory/exam room and the ultrasound tech does an ultrasound simultaneous with the doc putting a needle through your lower (I mean low) abdomen. Oh, she swabs on a ton of iodine of course and what hurts is the needle she uses for numbing the area. It's kind of cool, but I couldn't watch it go in, but I could watch the ultrasound. The needle takes out a micro piece of the placenta and the dr runs a ton of tests. She will call you back herself with the initial results.

Good luck.

I am also newly pregnant. I just made an appt. to see Dr. Norman Ginsberg at The Reproductive Genetics Institute for a CVS: http://www.reproductivegenetics.com/.

I chose Dr. Ginsberg b/c my OB/GYN's wife went to him for 2 of her pregnancies. He has personally preformed over 10,000 CVS procedures with a miscarriage rate of 1 in 200. (I think the normally published rate is 1 in 100.)

Good luck.

Congrats on your pregnancy!!!! Also, my condolences on your lost pregnancies. I lost our first pregnancy just shy of 12 weeks and it was very difficult. My son just turned 2 1/2 as well.

My advice to you regarding the tests.....Ask yourself, what will I do if there is something wrong? I've heard of women in their early 20s have children with problems and women in the early to mid 40s have normal children. I knew the risks too about miscarriages when we were offered these tests. I also knew that I would not consider abortion/termination if there was a problem. If these are not options to you then why go through the stress and possible problems of them.

I just had a friend who had mono-amniotic twins (same amniotic sac) and so many things could have gone wrong. In her last 2 months she had twice weekly ultrasounds and when she has 1 set of early contractions, which they stopped, she spent her last month in the hospital and they delivered at 34 weeks. The one thing she said was, sometimes technology is not a good thing.

Good luck in your decision and whatever you decide, make sure that you are comfortable with that decision. Don't let others scare you or make it for you. This is your baby and you and your husband's choice. Again...CONGRATS.

I just delivered at 32 weeks. I saw Women's Health Specialists in Grayslake (in the new Lake forest building). They did a test called Nucal Translucency (sp?) which they did a blood test and an ultrasound Instead of an amnio. Vertually no risk compared to an amnio and you get the same results....