The Matzav Shmoooze: Dear Would-Be Parents


babyDear Editor,

We have a child born with spina bifida, and through his experiences, we have learned a lot about the illness. What we would like to share, however, are two very important pieces of information that are not so readily available for parents-to-be. We wish to share the following information so that we can keep Am Yisroel healthy and informed.

When our child was born with spina bifida (myelomeningocele), we were totally shocked and unprepared. Even more shocking was the idea that we should have known about the spina bifida from the beginning of our pregnancy, according to the many doctors we were treated by.       There are two very crucial pieces of information that we have learned about and would like to publicize:

It is important for young women to take vitamins. Vital nutrients take months to enter and stay in your system. Folic acid is crucial in helping to prevent spina bifida, so young ladies should start taking it as early as possible. (Don’t take our word for it. Ask your doctor!) Folic acid is available in every pharmacy and is not expensive at all. All women of childbearing age should consume 0.4 mg (400 micrograms) of folic acid daily to help prevent spina bifida and anencephaly. CDC estimates that 50-70% of these birth defects could be prevented if this recommendation would be followed before and during early pregnancy.

Our second piece of advice is for women who are already expecting. There is a simple blood test that can be drawn during your routine doctor’s appointment. It is called an AFP (Alpha-Fetoprotein) Test and it can detect issues with your pregnancy early on. This is not to be confused with an amniocentesis, which is another test that cannot be performed until much later on during pregnancy and is much more dangerous to the unborn child. The AFP is a beneficial tool to help prepare the mother and child for a healthy pregnancy and a safe delivery. If we had known that our child had spina bifida, there would have been changes made to our delivery, including having a neurosurgeon on staff, having the ICU on standby, and having a C-section, all to ensure the baby’s safety and wellbeing. Don’t be afraid to get this blood test.

Tzvi and Sara

Brooklyn, NY

{ Newscenter}


  1. I don’t know of any doctor today who does not do these test routinely. Hashem should give you strength.

    Your point is well taken. However, doctors with their limited understading of nutrition do not have the full scope of deficiency. That is to say our diets are severely lacking in the basics which our grandparents had – pure unadulterated foods. Processed foods leach nutrients, so even if you are vigilant with your diet, you are at risk. This includes the entire population and not just pregnant women. Folic acid is only one of many components needed for a viable foundation – essential fatty acids, calcium, iron, etc. Swallowing a vitamin is helpful but not the answer. People need to start re-thinking about what they put into their bodies. We all need to eat A LOT of nuts, seeds, avocadoes, legumes, grains (not flour), healthy oils to maintain good health from cradle until 120.

  2. What a beautiful message to all young couples; what a chessed…May H”KBH give you the strength to raise your child…..Hatzlocho

  3. Thank You for sharing your story with us. Your advice should help other future parents. Hashem should bless you both and your new baby.

  4. While I sympathize greatly with Tzvi and Sara
    and I wish them tremendous Siyata Dishmaya and Hatzlacha in dealing with this difficult challenge, we, too, have a child born with spina bifida. Accordingly, we are familiar with both issues mentioned above and we would like to respectfully point out that there are various opinions amongst doctors regarding the first piece of information and there are various opinions among Rabbonim regarding the second piece of information.

  5. The advice on AFP blood test is controversial. There is no name of a MD standing behind those statements, some of which are false (taking folic acid is effective for a few weeks, until the neural cord is formed, and is routinely prescribed) and no explanation about a third trimester sonogram, the safest and most effective way of diagnosing spina bifida. Only junk science practitioners suggest avoiding sonograms. Please make sure to discuss the subject with a MD you trust, or if you are a lady, with your OB-GYN.

  6. Thank you Tzvi & Sara!
    Wishing you both much nachas and strength to grow together with life’s challenges, and to enjoy as a beautiful family, many Simchas!

  7. To the Matzav editors: This is a very interesting post. To read it without reading the comments makes it seem as what is written is factual. Then we read the comments and see that perhaps it is not fact at all. Perhaps it is even worng to begin with. Yes there is a concept or aylu v’aylu divrei elokim chaim and as usual there are two sides to the story. It should be an onus on the moderators to think before sharing such information and certainly when you do, please preface the article that this is the personal opinion of the writer and not verified or researched to be true.

    Thank you

  8. moshe elimelech,
    No one disagrees at all.
    No Dr says NOT to take Folic acid.
    and no Rav says not to take precaution and have an AFP test, i think you’re confused with the amniocentesis test which is not always recommended.

  9. oy vey!
    this is actually fact, as i have a child with a disability.
    what do you believe is the “other” side? or maybe find out if there is another side before posting. we can say that about every post here.

  10. please don’t pasken what kind of tests should be taken based upon a post on matzav please ask your moreh horaa since this is not a simple matter

  11. “Routinely prescribed” doesn’t meant that the ladies are taking it! And by the time a woman sees an OB, it is usually too late for the “prescribed” to prevent SB in that pregnancy. Folic Acid needs to be taken preconception, or as early as possible, not once it’s prescribed somewhere in the first trimester, at best.

    Re: the AFP – the reason why many women do not take it is NOT cluelessness. It is because there are many false positives, and many Rabbanim are opposed to the test for the craziness it can cause. It shows a “higher than normal chance” of having xy or z conditions, then the couple goes crazy with worry, the dr’s make them meshuga with all sorts of tests that do carry risk (like amnio), and its usually for naught. What is more reliable in diagnosing SB in utero is the 20-week ultrasound, btw. And don’t let your dr’s guilt you about not taking the AFP – there are plenty of good reasons why you didn’t take it!

  12. Is the couple writing from USA? Folic acid is added as a supplement to pasta, rice and other common staple foods. If a lady were on a strict low-carb diet/fad, did not take supplements (folic acid is prescribed to all fertile-age women who see an OB-GYN) and did not eat green-leafy vegetables because they are time-consuming to check, then it might be possible folic acid intake was inadequate.

    The letter does not explain why it is now believed insufficient folic acid caused the illness. Folic acid supplements do not eliminate every case of spina bifida but will take care of all avoidable ones.

  13. I thought it was obvious, but of course we took a sonogram! It was missed, that’s when we found out the AFP would have told the DR. take another sonogram or at least another look at the sonogram done already!!
    Remember it’s a blood test being done anyway.

  14. #9 First of all, we should clarify this is a general discussion and unlikely to apply to the specific case. If the OB-GYN prescribes supplements and ladies do not take them, they should at least say so, and no doubt the doctor will explain why they are necessary. What else would you suggest? That doctors force people to swallow pills? If they were prescribed, the doctor acted properly. The AFP, I agree, should not have been prescribed, and certainly not for a patient who isn’t considering abortion.

    #11 I am sorry about what befell you and wish a refua shleima to your baby and much strength to you and your family. It is not quite possible to miss spina bifida, except in a few rare variants. I believe you might have declined the morphological sonogram, usually scheduled between 20-22 weeks, or you might have specified on paperwork that you are not interested in abortion. As a result, the ecographist had no reason to tell you the bad news and cause you needless heartache. If indeed the sonograms failed to identify the malformation and you had asked to be informed, you should sue for malpractice: your child needs that money.

    I do not recall WHO or national guidelines proposing CS or NICU as the gold standard of care for SB, if I am incorrect please post the references. According to WHO protocols, patients are offered termination and, if declined, there are pediatric neurosurgery options after birth. In-utero surgery is, unfortunately, not yet an option for most patients (even assuming it can be paid for).