Detection of abnormalities - nuchal fold etc|
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Detection of abnormalities - nuchal fold etc
By sharon jayne on Sunday, November 7, 2004 - 10:21 pm:
I am newly arrived in Japan, and not in Tokyo (about 4 hours north by train) and 6 weeks pregnant. I am 39 this month and am getting myself into a real state regarding chromosome disorder testing. In my country I would be offered a nuchal fold scan at about 11 weeks, together with a blood test. A high risk result would lead to (if requested) a CVS or amnio test. What is the situation here? I am concerned after reading one woman say her friend had a test wrongly done . I have read that the nuchal fold scan needs to be done by experienced and skilled technicians. Is it common here? What about the other tests - obviously skill and experience are vital for these also, considering they can lead to miscarriage. Please help before I give myself an ulcer! Thanks
By tokyomum on Monday, November 8, 2004 - 12:28 pm:
I had my two children here delivered by Dr. Sakamoto. He trained in the US and he's at Tokyo Medical Clinic near Tokyo Tower.
I can not recommend him highly enough. He was fantastic. He did the nuchal scan and blood tests. I did not have an amnio as I was under 36 years of age and the nuchal scan and blood tests showed very low risk
All the best
By sharon jayne on Monday, December 6, 2004 - 3:18 pm:
for anyone interested , there is more about this on the thread called Birth Options.
By Mae on Thursday, November 24, 2005 - 3:10 pm:
I am newly pregnant too and just arrived from Australia, I should be doing a nuchal test as well. Would be interested to hear if you have any further information to share.
By Inna M on Friday, December 9, 2005 - 9:40 am:
Hi girls, i did the nuchal scan just recently at Tokyo Medical Clinic by Dr Sakamoto. He explained what he measured and gave me the scan picture where i can see my measurements and how they were done. I am going to do the quadro blood test there as well. If you are intersted the cost of consulting with nuchal test was about 20,000 Yen.
By K&R on Tuesday, January 17, 2006 - 3:40 am:
Hello everyone. We are a mixed couple (JM/WF) who are considering taking nuchal scan, CVS, and amnio tests. It seems from various posts that Dr. Sakamoto is the safest bet but has anyone here had any experience of these tests with other English speaking doctors or hospitals in central Tokyo? Since some of these involve considerable risks to both the baby and the mother, we would like to make sure that the person conducting the tests knows exactly what s/he is doing. Any information is greatly appreciated. Many thanks in advance!
By Elisa on Wednesday, January 18, 2006 - 8:12 pm:
I am 36 and 10 week pregnant with first child. I am seroiusly considering to have the amniocentesis, any experience with Dr.Sakamoto?
By Elisa on Monday, February 20, 2006 - 12:24 am:
Hi, I am looking for a good and safe place to get an amniocentesis in Tokyo. Any ideas?
By Swapnali on Saturday, July 1, 2006 - 10:35 pm:
why do all these tests are required? and who should do them? Is every pregnant woman needs to take this tests?
By Swapnali on Saturday, July 1, 2006 - 10:42 pm:
why do all these tests are required? and who should do them? Is every pregnant woman needs to take this tests?
By sharon jayne on Sunday, November 7, 2004 - 8:35 pm:
Hi Mary - I hope all is going really well for you, you must be very close to B day now! I have a question - I am also 39 and 6 weeks pregnant now. I am concerned about the availablity of chromomsome screening tests here. In my country i would be given a nuchal scan, to measure nuchal fold and this might be followed by either a CVS or amnio test. Were you offered these? Or anyone else please, I would appreciate all information.
By Sue Slater on Sunday, November 7, 2004 - 10:14 pm:
My friend had a nuchal scan done at a very reputable clinic in Tokyo only to be told when she showed the results to her doctor in her own country that the doctor in Japan had measured in totally the wrong place. The doctor here told her she had nothing to worry about, and that her results were fine. In fact he was unqualified to be conducting the test at all. If I was you I would go to a large hospital like Seibo for the test.
By Janine Boyd on Monday, November 8, 2004 - 12:30 am:
I had a similar experience
I have had 4 babies. 2 in Australia and 2 here in Japan.
The two here were at 35 and 36 yrs so I decided on having both tests. The nuchal tranlucency test and the amnio later.
No. These tests were definitely not offered as such here, I had to ask for them and most doctors seemed to be suprised that I would want them.
I experienced a similar mistake as Sue above with 1 doctor, who measured head to feet when he should have measured head to bottom to estimate the embryo age. As a result he estimated the gestational age to be different by a couple of weeks to what it was. We disagreed on the the age. It was a planned pregnancy with only 1 posible date so I knew I was right which lead me to research why he had made this mistake. Apparently depending on the age of the embryo, there are 2 different points to measure. Either head to tail bone or head to feet
I tried 3 different doctors before I found one who really seemed to be familiar with the tests, and that was in the prefectural hospital where the Doctors had had some overseas training but I had to ask for a referral to get in initially.
With the amnio it took a lot of convincing the Doctors that at my age it is recommended in my home country and they seemed to be suprised why I would be concerned, it was pretty scarey as its not a very common proceedure here it seems.It is also not covered by national insurance so be prepared for a bill of about Yen 70 000 for the amnio alone.
One problem with such a big hospital was that I never had the same doctor so that was a little daunting as well and the waiting time for check ups was anything from 2.5 hrs to a minimum of a 1 hr wait.
They wont tell you the sex of the baby from the amnio either. Must be for liability reasons. But they will make an educated guess from the sonogram.
Another problem with the amnio is that they wont do it till very late in the pregnancy and it takes almost 2 weeks for the results, so be sure to go as early as they will let you if you have concerns. They will also ask you what you will do if the tests come back worrisome, so its best to decide that before the test, or if having the test at all will make any diffrence to your reaction to negative results.
Dont forget to take a book along on the day of the amnio as the doctors recommend you lay still for about an hr afterwards.
I hope you get enough information to put your mind at ease.
By sharon jayne on Monday, November 8, 2004 - 11:47 am:
Thanks for the info . I wish I could say that it has put my mind at ease but actually I am more freaked out than ever. Sue, you suggest Seibo, do you think they would know what they were doing in this regard. I am seriously considerign flying home for the scan, as this is quite an issue at my age. Thanks again.
By Julie Osborn on Monday, November 8, 2004 - 12:15 pm:
I have some concerns about the tests you mentioned, and you might see if you can find out more before flying home. When I was pregnant at 35 (true, quite young :-), but curious about these things all the same), I did some research, and this is what I
1. Doctors don't tell you all the risks of the procedures.
nuchal fold test:
According to a report in the February 28 2001 issue of the Journal of the American Medical Association
(JAMA), the nuchal fold marker, if found, may predict the presence of Down syndrome. However, there were many examples of false positives, in which the markers suggested the presence of Down's but subsequent tests showed that the unborn child did not have the syndrome. The study authors wrote that if the ultrasound markers are used, "there will be inevitable losses of unaffected fetuses as a complication of amniocentesis." In other words, the follow-up amnio causes the miscarriage and death of a healthy baby.
risks to baby--fetal death (1 to 2%), orthopedic deformities such as club foot, injuries from needle puncture including hemorrhage, infection, respiratory difficulties at birth (suspected to be due to the sudden decrease in amniotic fluid at the time that fetal lungs are developing) risks to mother--abruptio placenta, premature rupture of membranes, uterine infection, puncture of urinary
bladder, increased postpartum hemorrhage, baby is spontaneously aborted or stillborn
My source here is a compilation of amniocentesis complications and resource articles by Ada B. Ryan,
Because CVS is performed earlier in pregnancy, it carries a higher risk of damage to the baby than
amniocentesis. Depending on the expertise of the physician, CVS has a miscarriage rate 2-4 times that of amniocentesis, and studies suggest a possible increased risk of limb deformities (shortened fingers and toes, missing digits). My source here is Dr. Sears, The Birth Book.
2. Healthy women are probably lower risk than they think.
Yes, congenital abnormalities increase with the mother's age, but keep in mind that those scary high numbers include everyone (people with family histories of the abnormality, women with poor diets during pregnancy, etc.). A figure in the American Family Physician journal (Aug 15 2000) showed the risk of Down syndrome in live births at half a per cent for 38 year old mothers, increasing to .8% for 40 yr-old mothers. This was still significantly below the 1 to 2% fetal loss when amnios were performed between 15 and 20 weeks.
3. Finally, I had to ask myself, what would I do with the results? If the fetus tested positive for Down syndrome, would I abort it? If not, that is, if my husband and I would decide to carry the baby to term anyway, especially given that the tests are sometimes wrong, then there is much less reason to subject myself and baby to the test. Oddly, when I was offered these tests at a hospital in the States, the doctor never brought this up.
I hope this helps, or at least doesn't cloud the issues even more for you! Enjoy your (brand new!) pregnancy. It's really a special time...
By Scott Hancock on Monday, November 8, 2004 - 2:00 pm:
It sounds as if your anxiety is becoming a factor for your decision. You might indeed be better off taking the approach that YOU feel most comfortable with.
If, there was a result you were unhappy with here, it sounds as if you might be second guessing yourself severely afterward for not doing what you feel is the most dependable course.
I'm not advising you to go or not. Just be OK with allowing yourself to get the most peace of mind you are able to.
Just my thoughts reading your messages...
By Sue Slater on Monday, November 8, 2004 - 6:05 pm:
Sharon, I thought a big hospital would be a safer bet than a clinic. This is because a hospital that specializes in treating pregnant women would undoubtedly be carrying out the nucheal scans more often than a general clinic. Apparently it is best that the doctor doing the scan does them regularly and knows what to do and what to look for. I certainly would think twice about flying home for the test. I am sure that if you told the people at the hospital what your concerns were that they would do their best for you. I don't think you should worry too much, just do your homework and make sure the doctor knows what he or she is doing.
By Caroline on Monday, November 8, 2004 - 8:32 pm:
A friend of mine did the amniocentesis and the results were positive. She was told that her baby was SURE to have an abnormality. The baby (now 3 years old) turned out to be perfectly fine... I second Julie's post above about weighing the risks over the benefits.
By sharon jayne on Monday, November 8, 2004 - 8:35 pm:
Thanks everyone for the input. It is a confusing time, and while i felt fine about the risks with my first child (I was 35 then) the numbers do change significantly as your approach 40.
It is interesting that in the two cases mentioned it was the ob. doctor doing the scans etc. I would have thought that it was a specialist sonographer's job - do these guys consider themselves jacks of all trades ? Or maybe the system is just different here. Anyway, thanks again and any other stories , comments or advice gladly accepted.
By Linda Gondo on Monday, November 8, 2004 - 10:53 pm:
A question for Janine and Sue: Do either of you know if the doctor(s) who measured in the wrong place for the nuchal scan are still practising, and were they at all penalized?
Sharon, good luck with your decision. For what it's worth my advice is to go with your gut feeling and follow whatever course of action is going to give you maximum peace of mind. I will soon have to make a similar decision as we are planning to become pregnant very soon and I am also in the same age category, so I am interested in what you decide to do. If you find someone really good that does the nuchal tests, would you mind posting it on this forum?
All the very best with whatever you decide.
By sharon jayne on Tuesday, November 9, 2004 - 1:03 pm:
I think I have decided what to do. We were supposed to be heading to southeast asia for Chistmas anyway, so I am going to get the scan done at Bumrungrad in Bangkok. I have had personal experience with this hospital and it seems great. I was with a friend when she had an eptopic pregnancy treated there and the procedure and technology were state of the art. Not to mention that even tho they are private, the cost will be a fraction of that in Japan (for a country that needs kids they sure do make it an expensive exercise!) . I haven't confirmed this yet but will keep you posted.
By Linda Gondo on Tuesday, November 9, 2004 - 5:21 pm:
Bangkok seems like a great alternative and you sound much happier with this option. I may follow in your footsteps depending upon your experience there. Thanks for keeping me posted.
By Janine Boyd on Wednesday, November 10, 2004 - 11:22 pm:
To Linda and Mina Jo (who emailed me privately)
You miss-read my message.
The doctor concerned made a mistake estimating the gestational age of the embryo, not the nuchal fold....I didnt give him the chance.
At the time I went to see him I was just a tad too early for the test but asked about it anyway. The doctor insisted that I must have mixed up my dates so because of that, I didnt feel confident sticking with him for the actual test. I know its only an estimation on his side butI knew exactly how many weeks pregnant I was. The doctor also didnt seem to know what I was talking about when I said nuchal fold, until I used the term nuchal translucency, but he still looked vague enough to convince me that should try another doctor who was more familiar with the testing.
My advice to pregnant moms is to try a few hospitals till you find one that you feel comfortable with, or for peace of mind visit another hospital just to get a second opinion. Read lots so you know what to ask at the check ups and ask the same questions all over again. Finding a doctor you trust or a hospital you feel secure in makes all the difference.
This is a fantastic site for all questions
I eventually changed to a national teaching hospital which didnt have the polished wooden floors, fancy waiting room and the gourmet menu but I found the doctors at this hospital easy to talk to up to date on methods used overseas. They didnt do cartwheels when I said Id like the nuchal fold test done. They were also very accepting of my rather particular birth plan which was very natural and non-interventive. They only baulked on the request to dim the lights and to forbid student doctors but said they would let my husband stay with me during the birth and would allow me to check out the next day as long as the baby was well. Might I suggest if anyone else is thinking of leaving early, start asking about it early on as that one shocked them the most. They couldnt believe Id want to swap a hard hospital bed, a curtain's width away from my neighbour's screaming baby for the comforts of my own house and classical music of my choice.
The NF test is only a guide rather than a definative test of downs syndrome. The only way to be sure is to have the amnio or CVS test but they are done much later into the pregnancy allowing you less time to adjust to the idea of having a special needs baby or making the decision to terminate.
I have since read that the doctor needs to have specialist training to do the nuchal translucency test but Im not sure whether this is the case here.
In Australia for my previous 2 pregnancies, I was only given the one ultra sound at 5 weeks in my entire pregnancy (public system) so I expect you would NEED to be a specialist if its a one shot chance of checking for deformities. Here in Japan we are spoilt by being offered many ultra sounds throughout the pregnancy.
Perhaps the nuchal fold thickness is rather obvious when the doctor is checking for changes on a monthly basis.
On the whole the standard of care in Japan is extremely high, just dont stick with anyone that doesnt make you feel completely at ease at this terribly important phase in your life.
By sharon jayne on Saturday, November 27, 2004 - 5:49 pm:
HI, Sharon here again. LInda, I said I would add details re testing in Bangkok at Bumrungrad Hosptial. I have not been yet , but here is what I know now.
They do the triple test but not quad test. Triple test costs around 2,500 Baht (6,500 yen) .
They also do the Nuchal fold scan, estimate costs 2,000 Baht (5,200 yen) .
Amniocentesis costs 12,000 Baht (about 31,000 yen). I am told they do this test very often so one would hope they are skilled at it.
Note - there is a doctor'S fee on top of these prices.
I hope this helps anyone who might need it and, feels, like me, worried about the huge cost and inavailability of such test here in Japan.
(Administrator - is it Scott? Are you able to move the posts on this topic to the new thread I started, which may make it easier for other people to find this information? Thank you)
By Linda Gondo on Saturday, November 27, 2004 - 10:30 pm:
Thanks for the info about the tests at Bumrungrad Hospital, that's a great help, and all the very best when you go to have your test.
By Elisa on Wednesday, January 18, 2006 - 7:59 pm:
I am pregnant and I am 36 and seroiusly considering to have the amniocentesis, anyone have it had with Dr.Sakamoto?
By Lindagondo on Saturday, June 21, 2008 - 5:18 pm:
Has anybody found anywhere that does the expanded
newborn screening test (that tests for up to 30 disorders) in Tokyo? It`s a fairly new test that`s becoming more and more common in the US and Australia....It seems to be not very well known here.