Hello English Forum. I am posting from a new account because I am newly pregnant (7 weeks) and since we haven't told anyone (including work) I would like to avoid anyone at work making a connection too early if they read this forum...
My question is regarding tests for down syndrome. I just had my first scan and everything looked normal (heartbeat etc). I was 36 when I got pregnant and I will be 37 when I give birth (cross fingers all goes well). However, I was very puzzled when my doctor told me that people don't do testing for down syndrome anymore! Everything I've read says I'm at risk and should be screened! This doctor has proved to be a bit patriarchal in the past, and he has a big slipcover copy of the bible behind his desk (and one in the waiting room) and I didn't want to judge based on that but then he didn't really initiate a discussion about screening, I had to ask about it... maybe I misunderstood, but perhaps I have a doctor with some opinions that are different than the current medical community. So now I definitely need to become more informed. I also have limited choices in doctors given my current location and need to decide how far I want to travel and if I could even have other choices...
Anyway, I asked about screening and he did provide information that I could request screening, nuchal translucency measurements and a triple test (blood I believe) at my next appointment (around week 13). He also said I have the option of a the PraenaTest which is not covered by insurance and I would need to travel to Zurich for it and it would cost 1500CHF - this is the blood test that draws fetal cells from the mothers blood and tests for a few trisomies 21, 18, 13. My husband and I have discussed our actions following test results and we are in complete agreement.
So my questions to the forum are:
No screening for Down Syndrome? Weird or not?
Abortion - the law in Switzerland says no abortions past 12 weeks? What about after a positive outcome for a trisomy?
PraenaTest - has anyone used it recently? Is the cost about right? Maybe I should just skip the screening and go straight to the blood test?
I don't have the time to give your answers in terms of the screening (those are done after 35 if I remember well at home, here I was not in a risk group so did not worry), but I would recommend for you to change your doctor to find somebody you trust. It's a swift transfer.
Regarding Down syndrome screening test: Insurance covers the screening test and if the test says you are at risk , then doctor advises you to take another blood test ( not covered by insurance) . Our doctor advised us not to take blood test unnecessarily because they take blood from uterus ( or placenta not sure) which is not that good for the baby, but at the same time is 99.999% accurate. Your insurance might be different from mine, so checking with insurance company helps.
I wish you all the very best and hope everything is going to be alright .
Edit: I got confused with blood test and amnio.
I agree with Musicchick. In your position I would definitely look at changing doctors.
I only know second hand from friends who have has babies here but the nuchal scan and trisomy blood test( triple test) are certainly offered as routine here in Neuchatel and it's up to the parents to decide whether they want to have the tests or not. Based on the results of these further tests may be recommended.
A friend who was exactly the same age as you had a high risk result from the initial blood test ( although nuchal scan was OK) and was offered the choice of an amniocentesis or the foetal cell blood test and she chose the latter because of the risk of miscarriage after amnio. It cost her around 1350 chf ( not reimbursed ) so your 1500 chf ballpark figure looks about right. The blood was taken from her arm for this test so no risk to the baby.
How does it work for changing doctors? My current doctor is at the big regional hospital where everyone goes to for birth. So if I go somewhere else for during the pregnancy I would still be back at the same place when it comes time for birth. Or are there different doctors?
+1 for the foetal cell blood test.
I was always given the option of a very detailed scan at 20 weeks or amnio at 16weeks. And for a later pregnancy, a CVS at about 12 weeks as I recall. Other tests like the blood test and scan might give you some peace of mind but there were a lot of false positives, and ones that slip through, so accuracy is really a problem in my opinion.
Your information about abortions is incorrect, or maybe it is the terminology. Interuptions of pregnancy, I beleive under the term of having a medical need, are allowed much later than 12 weeks, but cannot remember if it was 18 or 20 weeks. Clearly past the date you would get the results of an amnio. And if you were in real dire straits some neighboring countries have even later termination dates, so in an emergency that is also an option, but no need to go there as the swiss law is perfectly amenable for most cases.
But is seems you have a bit of the country doctor, perfectly fine for many, but not for all. I definitely had to travel a distance for a more experienced doctor given my complex history and it was worth it. Really do change drs if you have doubts.
Does your insurance cover you outside of your canton? I think basic no, but supplemental yes. That may be the first issue when changing doctors.
Are you confused between screening and testing? the neuchal fold and blood test are screening. Your doctor is correctly telling you that these can only be accurately done around the 12 -13 week window. They give you odds or probability that the baby may be affected and then you make the decision as to whether to go ahead and have an amnio (which is where they draw blood from the placenta). It is definitely standard care to offer the screaning but your gynae may not himself do the amnio - it is better for this to go to someone who does them very regularly and has a good success rate.
So if he is not offering screening, go somewhere else. But be pleased he's not getting involved in amnio testing which, as I said, is pretty specialised and should only be done by someone with real expertise in the area.
Good Luck!
PS the law regarding termination where there is a proven anomaly with the baby is different to the regular termination law and so terminations are allowed up until a much later date
+1 for the others encouraging you to switch to a doctor you feel comfortable with. Your OP raises many issues surrounding pregnancy/screening/abortion that can create quite divided opinions - and hopefully this thread will respect that.
I was the same age as you when I became pregnant the first time (the doctors at Unispital Z wouldn't do an xray of my wrist unless they knew definitively whether or not I was pregnant, I wasn't sure yet, left with a huge cast on my arm and a pregnancy confirmation). The only test provided on NHS for "older" mothers was amnio, but I went for nuchal screening combined with blood tests in London (early days of its development as reliable testing method). When it came time for the amnio I went to the hospital and left, without having it done. The doctor I had explained the risk statistics in such a way that I couldn't take the chance, not that my child would be born with Down's or another syndrome, but that I would lose the child I had.
Long stor(ies) short - you owe it to yourself, and the doctor, to have a relationship based on trust, and that seems to be midsing in your current situation.
It's pretty simple, you choose a new doctor with space on their patients list, get an appointment, tell the receptionist the name of your previous doctor when you do this, then the new doctor asks the old one to forward your notes. You don't have to explain, nor see the previous doctor again.
If he's on duty in the hospital at the time you're admitted then I'm sure he'll be perfectly professional, people change doctors (especially in specialities such as obstetrics/gynaecology) quite often, it's not a big deal.
I worked for a Perinatologist in a Perinatal High-Risk Testing Unit for 7 years in the US in the late 80's-early 90's. I can only speak to the norms at that time.
Women over 35 and/or fathers over 50 were highly encouraged by the insurance companies and the doctors to have an amniocentesis at 16 weeks to rule out chromosomal abnormalities in conjunction with a Level II ultrasound to rule out structural abnormalities. Results of the amnio were back in about 5 days. Results of the ultrasound were, of course, instantaneous.
CVS, or chorionic villi sampling, was done at 12 weeks gestation and was reserved for patients of extremely high-risk, i.e. mothers who were currently undergoing chemo, for example, which is not the case in your circumstances.
There was always a risk of spontaneous abortion from either test, (although I never saw one case of this in 7 years), and it was up to the parents at the end of the day if they wanted the test or not. I must reiterate, though, that most insurance companies required an amnio at 16 weeks if the parents were over 35/50. Some of them got out of the requirement due to religious reasons.
I'm pretty sure that the preferred option nowadays should further testing be recommended is the foetal cell blood test as it is non invasive and carries no risk to the baby. The only issue is the cost as it is currently not reimbursed by the insurance ( neither basic nor supplementary)
An amniocentesis should only ever be carried out by a trained specialist. It involves taking a sample of amniotic fluid and does carry a small risk of miscarriage. CVS ( chorionic villus sampling)involves taking tissue from the placenta and carries similar risks but is usually carried out earlier than amnio.
Both test give very accurate results as does the newer non invasive foetal cell blood test.
I declined the option if amnio when I was pregnant with my son at age 35 (36 when he was born). The triple test result came back showing a very low risk but we'd already decided that we wouldn't risk the amnio irrespective of the result.
Back in the day, both amnios and CVS had to be done in a hospital environment by a Board Certified Perinatologist. Regular Ob-Gyns were not authorized to do either of these two tests. That may have changed, however.
It was the same back in Belgium 15 years ago. I don't think it's changed since then.
My OB/gyn was the only doctor who could do the tests at the hospital where I gave birth as she was the only one with the required qualifications.
The problem is that in (at least this part of) rural East Switzerland, ob/gyns tend to be overbooked and it can be difficult to find one who'll take new patients. I had a 4-month wait for my initial appointment.
As for the nuchal/1TT screen, mine gave me a booklet to take home and read, and told me to let her know at next appointment (the 12/13 week checkup) whether or not we wanted to do it. No pressure either way.
Thanks to all for the information.
Finding another Ob/Gyn in rural east Switzerland may indeed prove to be tricky, I only got this doctor because the other doctor was overbooked and I had no option. I don't doubt his technical competency, just the bias of his advice which is why I have found all the comments here to be so valuable.
I think paying the fee and getting the fetal cell test in mothers blood is the way to go for us and avoid the other more invasive screening (CVS and amnio).
If it is necessary that I remain with this doctor, any other screens/tests that I should be aware of and ask should he not put forward information?
I'm currently pregnant with my second and I'm 37. I would strongly recommend you the blood prenatal screening, I took one called Panorama but there are severals in the market. I did mine in Spain as I just moved to Switzerland and the cost was 700 eur, maybe you can check if outside Switzerland would be cheaper than here? in any case is not reimbursable and you can have it starting in week 8-9 I guess. You don ́t need to see a doctor to make the test as in done in a laboratory, and in my case they sent the results within 10 days by mail. It will give you lot of mental peace.
Well, if you want to find out the sex of the baby but your pregnancy is completely uncomplicated, the code word is "size v. date" or "date discrepancy" or "date confirmation", wink wink.
Some insurance companies don't pay for ultrasounds unless there is a problem. To get around this, Ob-Gyns in the US, around 16-20 weeks gestation, perform a normal Level I ultrasound to, ostensibly, confirm the dates. Of course, all they are really doing is finding out the sex of the baby for the new parents. They already know, by checking fundal height measurements, that the dates are accurate. But the insurance companies play along and pay for the ultrasound anyway.
I did the Praenatest (nuchal was fine, but I'm also 36, so for my own peace of mind) with this lab
http://www.viollier.ch/ , the price is 800-1100 depending on what option you choose. It's indeed cheaper in Germany with the euro rate change, you can find places that do it here:
http://lifecodexx.com/praxen-und-kliniken.html