Skip to content
How It Works
Explore
Resources Ask a Question
Who It's For
Patients Caregivers Providers
Log In Ask a Question
PubMed This is a summary of 20 peer-reviewed journal articles Updated
Obstetrics

Future Pregnancies: Recurrence Risk and Prevention

At a Glance

The recurrence risk for iniencephaly and other neural tube defects in future pregnancies is roughly 2% to 5%. The most effective way to prevent recurrence is to take a prescription high-dose folic acid supplement (4 to 5 mg daily) starting 3 to 6 months before conception.

Thinking about a future pregnancy after a diagnosis of iniencephaly can bring up a mix of hope and significant anxiety. It is natural to worry about whether this rare condition could happen again. While the experience you have gone through is incredibly painful, there are clear medical protocols in place to help reduce risks and provide close monitoring for your future pregnancies [1][2].

Understanding Recurrence Risk

Iniencephaly is a very rare form of neural tube defect (NTD) [3]. Because it is so rare, specific recurrence rates for iniencephaly alone are difficult for doctors to pinpoint. However, we do know that iniencephaly is biologically related to more common NTDs, like spina bifida or anencephaly [3][4].

If you have had one pregnancy affected by an NTD, the risk of having another pregnancy affected by any type of NTD is higher than for the general population [1]. In general, the risk of recurrence is often quoted as being approximately 2% to 5% [2][5]. This means that in about 95% to 98% of subsequent pregnancies, the baby will not have a neural tube defect.

The Role of High-Dose Folic Acid

The most important step you can take to reduce the risk of recurrence is taking a high dose of folic acid (a B-vitamin) before you even become pregnant [6][7].

While standard prenatal vitamins usually contain 0.4 mg (400 mcg) of folic acid, women who have had a previous pregnancy affected by an NTD are typically prescribed a much higher dose—usually 4 mg to 5 mg daily [2][8].

  • Timing is key: It is recommended that you start this high-dose folic acid at least 3 to 6 months before conception [9][10]. This ensures that your body has the optimal levels of folate needed during the very first weeks of pregnancy when the neural tube is forming [10].
  • Medical Oversight: High-dose folic acid (anything over 1 mg) requires a prescription. Do not attempt to reach this dose by taking multiple standard prenatal vitamins, as this can lead to dangerously toxic levels of other vitamins, like Vitamin A [2].

Monitoring Future Pregnancies

When you become pregnant again, your medical team will provide “high-risk” prenatal care to give you the most information as early as possible [11][12]. This typically includes:

  • Early Targeted Ultrasound: You may be scheduled for a “Level II” or “targeted” ultrasound earlier than the standard 20-week scan, sometimes as early as 12 or 13 weeks, to check the baby’s skull and spine [13][11].
  • MS-AFP Screening: A blood test called maternal serum alpha-fetoprotein (MS-AFP) can be performed in the second trimester to screen for open neural tube defects [14][15]. Note: While MS-AFP is excellent for detecting open defects (like iniencephaly apertus), it may return a “normal” result if a future baby has a closed defect (like iniencephaly clausus).
  • Fetal MRI: In some cases, a fetal MRI may be used later in pregnancy to confirm that the baby’s brain and spine are developing normally [14][16].

A Path Forward

Every family’s journey after a loss is unique. Some parents find comfort in meeting with a genetic counselor to review their family history and discuss the details of their previous pregnancy [17][18]. While the cause of iniencephaly is often a complex mix of genetics and environment, having a clear plan for your health and future monitoring can help you feel more empowered as you move forward [19][20].

Common questions in this guide

What are the chances of having another baby with iniencephaly?
If you have had a pregnancy affected by a neural tube defect like iniencephaly, the risk of having another affected pregnancy is generally 2% to 5%. This means there is a 95% to 98% chance that your next baby will not have a neural tube defect.
How much folic acid should I take before trying to get pregnant again?
Doctors typically recommend taking a high prescription dose of 4 mg to 5 mg of folic acid daily. This is significantly higher than standard prenatal vitamins and should be started 3 to 6 months before conception to ensure optimal folate levels when the neural tube is forming.
Can I just take multiple prenatal vitamins to get enough folic acid?
No, you should never attempt to reach the 4 mg to 5 mg folic acid target by taking multiple standard prenatal vitamins. Doing so can cause dangerously toxic levels of other ingredients, such as Vitamin A. High-dose folic acid requires a separate prescription from your doctor.
How will my future pregnancies be monitored for iniencephaly?
Your next pregnancy will likely involve high-risk prenatal care, including a targeted ultrasound as early as 12 to 13 weeks to carefully check the baby's skull and spine. You may also be offered maternal serum alpha-fetoprotein (MS-AFP) blood screening and possibly a fetal MRI.
Should I see a genetic counselor before getting pregnant again?
Yes, meeting with a genetic counselor can be very helpful. They can thoroughly review your family history, discuss the specific details of your previous pregnancy, and help identify any underlying patterns or genetic syndromes.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What specific dose of high-dose folic acid (4 mg or 5 mg) do you recommend for my situation?
  2. 2.How many months before we start trying to conceive should I begin this higher dose?
  3. 3.Are there any medications I am currently taking that might interfere with how my body processes folate?
  4. 4.Can we schedule a 'level II' or 'targeted' ultrasound earlier in my next pregnancy, such as in the first trimester?
  5. 5.Is a referral to a genetic counselor recommended to look for any underlying patterns or syndromes?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (20)
  1. 1

    The recurrence risk of neural tube defects (NTDs) in a population with high prevalence of NTDs in northern China.

    Liu J, Li Z, Greene NDE, et al.

    Oncotarget 2017; (8(42)):72577-72583 doi:10.18632/oncotarget.19890.

    PMID: 29069810
  2. 2

    Does India need 'mandatory flour fortification with folic acid' policy to prevent neural tube defects?

    Yadav V, Dabar D, Prasad P, et al.

    Journal of family medicine and primary care 2020; (9(7)):3787-3788 doi:10.4103/jfmpc.jfmpc_396_20.

    PMID: 33102376
  3. 3

    Iniencephaly.

    Holmes LB, Toufaily MH, Westgate MN

    Birth defects research 2018; (110(2)):128-133 doi:10.1002/bdr2.1082.

    PMID: 29377645
  4. 4

    Multiple-site neural tube defects: embryogenesis with complete review of existing literature.

    Deora H, Srinivas D, Shukla D, et al.

    Neurosurgical focus 2019; (47(4)):E18.

    PMID: 31574472
  5. 5

    Spina Bifida Prevention: A Narrative Review of Folic Acid Supplements for Childbearing Age Women.

    Ledet Iii LF, Plaisance CJ, Daniel CP, et al.

    Cureus 2024; (16(1)):e53008 doi:10.7759/cureus.53008.

    PMID: 38406082
  6. 6

    Folic Acid Supplementation to Prevent Neural Tube Defects: US Preventive Services Task Force Reaffirmation Recommendation Statement.

    , Barry MJ, Nicholson WK, et al.

    JAMA 2023; (330(5)):454-459 doi:10.1001/jama.2023.12876.

    PMID: 37526713
  7. 7

    Craniorachischisis in a 33-week-old Female Fetus: A Case Report.

    Mirhan CVL, Dungog CC, Sotalbo KCJ

    Acta medica Philippina 2024; (58(6)):74-78 doi:10.47895/amp.vi0.6712.

    PMID: 38846167
  8. 8

    Pre-conception Folic Acid and Multivitamin Supplementation for the Primary and Secondary Prevention of Neural Tube Defects and Other Folic Acid-Sensitive Congenital Anomalies.

    Wilson RD, , Wilson RD, et al.

    Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstetrique et gynecologie du Canada : JOGC 2015; (37(6)):534-52 doi:10.1016/s1701-2163(15)30230-9.

    PMID: 26334606
  9. 9

    Folic acid and primary prevention of neural tube defects: A review.

    van Gool JD, Hirche H, Lax H, De Schaepdrijver L

    Reproductive toxicology (Elmsford, N.Y.) 2018; (80()):73-84 doi:10.1016/j.reprotox.2018.05.004.

    PMID: 29777755
  10. 10

    Folic acid supplementation in pregnancy and prevention of fetal neural tube defects.

    Wierzejska R, Wojda B

    Przeglad epidemiologiczny 2020; (74(2)):362-369 doi:10.32394/pe.74.29.

    PMID: 33115226
  11. 11

    Ultrasound and magnetic resonance imaging in the prenatal diagnosis of open spina bifida.

    Micu R, Chicea AL, Bratu DG, et al.

    Medical ultrasonography 2018; (20(2)):221-227 doi:10.11152/mu-1325.

    PMID: 29730690
  12. 12

    [Prenatal diagnosis of neural tube defects: Correlation between prenatal and postnatal data].

    Matuszewski L, Perdriolle-Galet E, Clerc-Urmès I, et al.

    Journal of gynecology obstetrics and human reproduction 2017; (46(3)):291-296 doi:10.1016/j.jogoh.2016.10.009.

    PMID: 28403928
  13. 13

    Iniencephaly: A Challenging Prenatal Diagnosis of a Neural Tube Defect.

    Mendonça L, Cerveira I, Santos F, et al.

    Cureus 2024; (16(12)):e75457 doi:10.7759/cureus.75457.

    PMID: 39791056
  14. 14

    Laboratory screening and diagnosis of open neural tube defects, 2019 revision: a technical standard of the American College of Medical Genetics and Genomics (ACMG).

    Palomaki GE, Bupp C, Gregg AR, et al.

    Genetics in medicine : official journal of the American College of Medical Genetics 2020; (22(3)):462-474 doi:10.1038/s41436-019-0681-0.

    PMID: 31700163
  15. 15

    Perspectives on urological care in spina bifida patients.

    Moussa M, Papatsoris AG, Chakra MA, et al.

    Intractable & rare diseases research 2021; (10(1)):1-10 doi:10.5582/irdr.2020.03077.

    PMID: 33614369
  16. 16

    Magnetic Resonance Imaging Evaluation of Fetal Neural Tube Defects.

    Egloff A, Bulas D

    Seminars in ultrasound, CT, and MR 2015; (36(6)):487-500.

    PMID: 26614132
  17. 17

    Fetal Exome Sequencing on the Horizon.

    Wou K, DeBie I, Carroll J, et al.

    Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstetrique et gynecologie du Canada : JOGC 2019; (41(1)):64-67 doi:10.1016/j.jogc.2018.06.016.

    PMID: 30580830
  18. 18

    Whole-exome sequencing on deceased fetuses with ultrasound anomalies: expanding our knowledge of genetic disease during fetal development.

    Yates CL, Monaghan KG, Copenheaver D, et al.

    Genetics in medicine : official journal of the American College of Medical Genetics 2017; (19(10)):1171-1178 doi:10.1038/gim.2017.31.

    PMID: 28425981
  19. 19

    Unraveling the complex genetics of neural tube defects: From biological models to human genomics and back.

    Wolujewicz P, Steele JW, Kaltschmidt JA, et al.

    Genesis (New York, N.Y. : 2000) 2021; (59(11)):e23459 doi:10.1002/dvg.23459.

    PMID: 34713546
  20. 20

    Closing in on Mechanisms of Open Neural Tube Defects.

    Lee S, Gleeson JG

    Trends in neurosciences 2020; (43(7)):519-532 doi:10.1016/j.tins.2020.04.009.

    PMID: 32423763

This page is for informational purposes only and does not replace professional medical advice. Always consult your obstetrician or maternal-fetal medicine specialist before planning a future pregnancy to discuss your individual risks and prevention plan.

Get notified when new evidence is published on Iniencephaly.

We monitor PubMed for new peer-reviewed studies on this topic and email a short summary when something meaningful changes.