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Letter to the Editor
Hello Editor and readers of Yeshiva World. Although I do enjoy reading your enlightening publication, what I would like to write about and ask you to publish is not in response to one of your recent articles. A friend of mine has a child born with Spina Bifida, and through his experiences we have learned a lot about the illness. What I would like to share however, are two very important pieces of information that are not so readily available for parents-to-be. Please post the following information so that we keep Am Yisroel healthy and informed.
MUST READ FOR FUTURE MOMMIES!
There are two very crucial pieces of information that we have learned about and would like to publicize:
Spread the word to all of your family and friends.
Tzvi & Sara,
Brooklyn, NY
Moderator-
If the title of this thread could be changed to “MUST READ and PASS ALONG – Spina Bifida, Pregnancy and Nutrition”, or something else that was indicative of this thread’s topic it would probably get more attention from its intended audience.
Choosing a thread title that’s generic and/or not indicative of the thread’s content causes the thread to be missed and overlooked by people who may have been interested.
right you are
There is something fishy about this post: the penultimate paragraph describes the blood test being discussed in the article as one that is performed so that a pregnant woman can decide whether to keep the baby. That is not a decision which frum women make, except when a pregnancy threatens her life. It leads me to question whether the poster is genuine or whether this is some sort of hoax.
I know very little about spina bifida, though I do know it is an extremely debilitating congenital disease, and so I cannot say that any advice proffered in the posting is wrong (or right, for that matter). But the casual reference to “keeping the baby” raises some questions about the source of this post.
nfgo3 the source of the post is irrelevant. It is the information itself that is importnat. As the Rambam says “ushma haemes mimi sheomro.”
All medical associations are in agreement that folic acid decreases the risk of spina bifida. The generally recommended dose is 0.4 mg for average woman. Women who are at increased risk (older, have had affected child) should take 4.0 mg.
It is important for women of child bearing age to take this if their is a chance of them getting pregnant since the benefits are within the first 28 days (this is when the neural tube closes). For many women, beginning taking the supplements once they find out is too late.
As far as the AFP test, there is a false positive rate associated with this that should be researched. This means that you could get a positive result (meaning your baby is at high risk for a birth defect) when in fact the baby is totally 100% fine. If a person wants to test for these types of birth defects even while not considering ending the pregnancy chas ve’sholom, then the triple or quad screen tests should better be considered due to what I saw was a high rate of false positives with the AFP test alone. In conjunction with other tests more accurate results are possibly obtained. One should do his/her own research and consult the obstetrician before deciding on whether or not to take the test.
I understand that the author is going through a difficult time, but when medical advice is presented to the public, it needs to include all relevant information. Spina Bifida is most commonly diagnosed through routine sonograms, usually by the 16th-20th week of pregnancy. Thanks to the wonders of advanced science and technology that Hashem has blessed us with, it is now possible to begin treatment while the baby is in utero. This surgery can substantially reduce the severity of the condition and in quite a few cases allow the child to live a full and active life.
By not including this information, it is being inferred that the only way to diagnose this condition is through the blood test and that treatment can only begin once the baby is born (will less optimal results). Sonograms are part of routine pregnancy care and are not done only if the patient refuses it. If there’s any personal preferences for not having a sonogram done, then please issue a disclaimer with your message. If its truly awareness that you’re trying to raise, then a good portion of the letter should have been devoted to the sonogram and surgery in utero. Taking vitamins is not a guarantee that this condition will be avoided (I’m not discounting its benefits). If parents are told that their unborn is being diagnosed with this disease, wouldn’t you want them to be aware of all options, including the one that offers the best possible results?
perspective -“If its truly awareness that you’re trying to raise, then a good portion of the letter should have been devoted to the sonogram and surgery in utero.”
I don’t know if you are in the medical field or not, but the OP is right on target. While US is standard during pregnancies – In- utero surgery is not. I don’t even know that it is rountinely offered even in the few hospitals that do it. And I’m sure as Obamacare (ie. -socialized medicine) comes into play -they might not do this at all in the future. It’s nice to read about technological advances in Medicine, but the way this country is going they will be doing less of these things, not more, if at all. Your criticism is totally unwarranted and in the reality of medicine in our day and age totally off base.
The part about taking a vitamin is right on target -it’s foolish for any Frum married woman looking to have kids not to take it.
The part about genetic testing is Not so Pashut and e/o should discuss this with their LOR. US in later trimesters can usually determine abnormalities and by many it’s routine, even though there are some Rabbonim that are possibly against this also.
First of all, the criticism is warranted because an ultrasound is part of routine care. Most spina bifida cases are diagnosed through that manner. Why are they suggesting that an AFP test be done as the first approach? It is usually not necessary (in regards to spina bifida) only if you opt out of the sonogram. They should have specified that this is an available option IF you have any issues with taking a sonogram. Presenting medical advice based on your personal choices alone is not ethical.
Furthermore, surgery in utero is becoming increasingly more popular in this field and in many other areas as well. Insurance companies are beginning to approve it more frequently as well, especially since they realize that the cost of the surgery will be lower than lifelong or extensive care. Even if would be done only sparingly, I still think parents have the right to be aware of the option. You never know if they will or won’t be approved for it (or find another way to have it done), if you don’t even give it a go.
I never discounted any value in taking vitamins, I actually fully support it as well. I was just pointing out that vitamins alone is not a guarantee that this situation won’t arise, so the proper medical advice is warranted.
As for Obamacare, I’m in complete agreement with you. Let’s hope and pray that this disaster is averted before it has a chance to be fully placed in effect.
spina bifida can now be treated in utero before the baby is born.
also, taking folic acid does not only help lower the chances of a spina bifida baby, it also ensures that the baby’s neurological system (brain and nervous system) forms properly.
“the penultimate paragraph describes the blood test being discussed in the article as one that is performed so that a pregnant woman can decide whether to keep the baby. That is not a decision which frum women make, except when a pregnancy threatens her life. “
Not true; many great poskim have permitted abortions in the case of a fetus with a congenital deformity. Those who rely on such opinions must not be described as not “frum”.
perspective -“First of all, the criticism is warranted because an ultrasound is part of routine care.”
Yes it is, because at that time you can’t abort the fetus.
“Most spina bifida cases are diagnosed through that manner. Why are they suggesting that an AFP test be done as the first approach?”
Because you can still abort the fetus acc. to some Poskim at that time. Read C. Hall’s post. Your Shitta in abortion doesn’t give you the right to criticize others that hold differently.
“Furthermore, surgery in utero is becoming increasingly more popular in this field and in many other areas as well. Insurance companies are beginning to approve it more frequently as well,”
Well this possibilty exists for next year, but the more likely occurance is that the insurance companies will follow Obamacare and the liklihood of this being covered routinely is very slight. If you would have posted your post as an alternative option to the OP -then that would have been fine, but Not as a criticism!
OP, thank you for bringing this to everyone’s attention. While yes, the OP failed to completely details the process in which doctors in the US can detect spina bifida, she was just bringing to light an important condition that, yes, folic acid is a key nutrient that when taken reduces the risk immensely. I took folic acid daily in the months before I was married. Since I gae birth last summer I have completely forgotten about it! Thanks for reminding me, and when I opened this threa a few days ago, I went out and bought a new bottle and have began taking them again. I do eat lots of leafy greens but, better safe than sorry!
Long time lurker first time poster here. I had to chime in that the folic acid is so important, and it is most important before the woman could possibly find out, so she needs to start taking it ahead of time.
Also, with regard to the nitpicking on the OP for mentioning abortion, I don’t think the intention was to present it as an option. It IS relevant because a lot of frum people avoid certain prenatal tests due to the misconception that the purpose of these tests is to decide whether or not to continue the pregnancy. This could not be further from the truth! These tests provide useful information that could make a crucial difference during delivery and the hours following. Even knowing you would never consider terminating, there is still valuable information to be gleaned from these tests that could make a difference for other decisions down the line.
Heath – I wasn’t recommending any info regarding my shitta. Just the opposite, the OP clearly left out information that wasn’t according to her shitta (no ultrasounds due to religious reasons*), hence my response to them. I wasn’t recommending not including the AFP test, I was suggesting that ALL info needs to be included.
If one has no prior knowledge about spina bifida, reading this letter informs you ONLY that there is the AFP test to diagnose it. If this letter is meant to help the public, it should have included the following summarized info:
” It’s best if this can be diagnosed during pregnancy. There are different methods in the way it can be done. The most routine method is the sonogram in which most women undergo during the 16-20th week of pregnancy. If you choose not to have the sonogram done or prefer an earlier diagnosis, there’s also the AFP Test method which can be requested from your doctor during the early weeks. The AFP test can have other implications as well, so that is best if its discussed with your doctor and your Rav.”
(*Being that ultrasounds are done as part of routine care, not having one done is mostly due to religious reasons)
perspective -“I wasn’t recommending not including the AFP test, I was suggesting that ALL info needs to be included.”
This isn’t what I criticized you about – this is:
“By not including this information, it is being inferred that the only way to diagnose this condition is through the blood test and that treatment can only begin once the baby is born (will less optimal results).”
I doubt the OP meant this or inferred this.
You obviously missed this line I wrote to you:
“If you would have posted your post as an alternative option to the OP -then that would have been fine, but Not as a criticism!”
Health – you keep on missing the point. The ultrasound is not the ALTERNATIVE OPTION, it is the REGULAR OPTION. The OP was recommending this test as the FIRST choice in testing. The AFP test is the alternative in most cases.
I would like to offer my apologies to the OP if I offended them in any way. My intention was only to bring the proper awareness to this disease and to point out the danger of omitting medical details when posting advice. I wish your child a refuah shleimah and may he/she lead a wonderful, full and active life.
perspective -“Health – you keep on missing the point.”
Actually you are!
“The ultrasound is not the ALTERNATIVE OPTION, it is the REGULAR OPTION. The OP was recommending this test as the FIRST choice in testing. The AFP test is the alternative in most cases.
If you reread my first response, the criticism was not in any reference to the AFP test or any other info posted. The criticism was entirely directed to the OMITTING of information.”
And since US is routine the OP didn’t have to mention it. So the OP had every right to Omit Routine tests, even if the pt. never heard of ultrasounds, the Doc would order it anyway.
“And since US is routine the OP didn’t have to mention it. So the OP had every right to Omit Routine tests, even if the pt. never heard of ultrasounds, the Doc would order it anyway.”
Please reread what you wrote above. It sounds like you’re just out to attack anything that comes by your way. If what you wrote above is accurate, what was her entire point of #2 (diagnosis and testing)? If the ultrasound is routinely done and conditions like this are diagnosed in a timely manner, why on earth is her point #2 being mentioned? Her point #1 – preventative care (with vitamins) should surely suffice. Why is she alerting everyone to be tested for this, when they’re already being tested for it?
Judging by the lack of prior diagnosis for her child and the lack of any mention of the sonogram test in this letter, it’s pretty safe to assume that she’s basically aiming this to people who follow her shitta. If so, a disclaimer should have been included.
Please dont tell single girls to take these vitamins they have enough on their minds without constantly having to be reminded that they are not married yet, once they are I”YH engaged they can take them.
perspective -“If what you wrote above is accurate, what was her entire point of #2 (diagnosis and testing)? If the ultrasound is routinely done and conditions like this are diagnosed in a timely manner, why on earth is her point #2 being mentioned?”
I already mentioned because there are some Rabbonim that Matter abortions in such a case -so you need to know about this test, not just the US.
“it’s pretty safe to assume that she’s basically aiming this to people who follow her shitta. If so, a disclaimer should have been included.”
I don’t think so -this is your assumption. The OP is just making people aware of a test that is not routine, which is usually used for abortions, but it can be used to diagnose even if you’re not planning on having an abortion.
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