By Lauren Kozlowski, MSW, MPH, MotherToBaby Georgia

“I didn’t even know I should ask my OB about that!” It’s a reaction I hear almost daily as a teratogen information specialist (a fancy way of saying I’ve been trained in evaluating and communicating risks of exposures, like medications, during pregnancy). This particular caller’s reaction was like so many women going into their first appointment after finding out they were pregnant – she really didn’t know how to be her own best advocate. I don’t blame her by any stretch. How are women supposed to just know this? What questions should they be asking? Why should they be asking them? I thought, not only did I want to help her, but all of the pregnant women out there, to have a positive, empowering experience once they’ve found their pregnancy care provider team.

The Importance of the HCP Match

Finding the right health care provider (HCP) for you is essential because doctors, physician’s assistants, nurse practitioners, and midwives are people just like you and me. They come with a wide range of personalities and styles of care. Sometimes they will match your own and sometimes they won’t. You want to be sure that the people that you entrust with your health and your baby’s health are going to help you make the right decisions about your care. Plus it is worth thinking about how you can reduce any stress you may have about sitting down with the person who will care for you and be a source of support during your pregnancy. In this blog I’d like to suggest some ways that you can plan for the most successful experience during pregnancy with your HCP. In this case, success means finding a provider who listens to you, makes you feel comfortable and discusses all of your concerns and options openly and respectfully.

Getting the Most Out of Your Appointments

The good news is there are some ways to empower yourself in these situations and be more likely to get what you need! Below I have a list of some ways you can get the most out of appointments with your pregnancy care provider:

1. You should be able to ask your provider anything you’d like to know about their experience and philosophy around pregnancy and child birth. You can even ask to make a non-clinical appointment to sit down with her or him and discuss this if you’d like to.
2. Be prepared for a short visit with the provider at regular appointments throughout your pregnancy. Write down your most important questions and make sure to ask them first.
3. If you’d like to research some topics before your HCP visit, choose your sources wisely. The internet is full of a lot of misinformation, but there are reputable organizations from whom you can get evidence-based information about pregnancy. Just a few examples include the American College of Obstetricians and Gynecologists (ACOG, the professional society for HCPs specializing in women’s health); the Centers for Disease Control and Prevention (CDC); the Food and Drug Administration (FDA); and our own service, MotherToBaby. Pull information from your sources and bring it with you to your appointment to drive your conversation with your HCP.
4. Bring a trusted family member or friend who can bring up anything you forget to – or that can step into the conversation to help make sure you are being heard correctly. This is particularly important at the first visit or when you are worried about something.
5. If you routinely take any medications, bring them up as soon as you find out you are pregnant (and when possible, even before you become pregnant); this will allow you and your HCP to talk about whether there are any alternative medications or therapies better suited for pregnancy and/or breastfeeding. And remember that our specialists at MotherToBaby are available to provide you with up-to-date information on the safety/risk during pregnancy and breastfeeding of any medications you may be taking.
6. If you see a specialist for other medical conditions (such as asthma, diabetes, arthritis, lupus, psoriasis, etc.), tell your OB provider who you are seeing and authorize them to communicate with one another about your care. When you are living with a chronic health condition, connecting your pregnancy care provider with your other health providers is important to ensure your disease is well-managed throughout your pregnancy and when you are breastfeeding.
7. Even if they don’t ask about it, tell your HCP about your use of alcohol, tobacco, or any recreational drugs (like marijuana, heroin, meth, etc.). Some of these substances can affect your pregnancy or your baby’s development, so it’s important for you and your HCP to talk about it even if you are just an occasional user. Recreational drugs are another type of exposure where MotherToBaby experts can provide you with confidential, up-to-date information on the safety/risk of use during pregnancy and breastfeeding. Importantly, talk to your HCP if you need help quitting any of these substances; there are ways to treat substance use disorders during pregnancy. You also have a chance of being screened for substances at birth – meaning they may test both you and your baby at the hospital. Being prepared for this is important so you know what to expect.
8. Ask questions about the hospital at which you will be delivering. Do they have any specific policies or practices you would want to know about in advance? Your HCP will be connected to a specific hospital(s); if you do not want to deliver at that hospital and your insurance allows for other options, you may need to find another prenatal care provider. It is best to ask these questions before you become pregnant or as soon as you start your prenatal care visits.
9. If for any reason you do not feel like your HCP listens to you or is able to create a welcoming, safe environment, change providers! If it’s a requirement of your insurance, get a list of providers in your network. Then ask friends or family if they have someone they’d recommend. You can further whittle down your list by other things that may be important to you, such as a male vs. female provider or office location. Pregnancy is such an important time in a woman’s life, so it’s critical that you are under the care of a health provider that you trust. Depending on where you live and what insurance you have, it may not be possible to find another provider – but if you are able and want to, the sooner you do so in your pregnancy the better. You deserve to feel comfortable and cared for!

A lot of these tips apply to any type of HCP, but pregnancy is a perfect time to flex your self-advocacy muscles and find the provider that is best suited for you. You and baby deserve wonderful and respectful care, and the reality is that sometimes it takes a bit of seeing what’s out there to find the right fit. Finding the right HCP can feel a lot like dating, but don’t be discouraged! If you don’t like the care you are getting, move on to another HCP – with so many exceptional ones out there you can find the best match for you and your pregnancy.

Although not specific to a pregnancy visit, ACOG also offers some tips to help you make the most out of your health care visit: https://www.acog.org/Patients/FAQs/Making-the-Most-of-Your-Health-Care-Visit

If you want to read more about advocating for yourself as a patient, some other resources are below:

Your Best Birth: Providers, Plans and Being Proactive

https://bloomlife.com/wp-content/uploads/2018/11/Best-Birth-Bloomlife-ebook-1.pdf

At the end this includes a great acronym BRAIN (Benefits, Risks, Alternatives, Intuition, Do Nothing) that can be used whenever you are making decisions or have questions about receiving medical care.

A Doctor’s Guide: How To Be A Patient Advocacy Rockstar (For You or a Loved One)

https://www.acsh.org/news/2018/06/21/doctors-guide-how-be-patient-advocacy-rock-star-you-or-loved-one-13106

Health Care Self-Advocacy: Be the Squeaky Wheel

https://www.care2.com/causes/health-care-self-advocacy-be-the-squeaky-wheel.html

The Complete Guide to Becoming Your Own Medical Advocate

https://betterhumans.coach.me/the-complete-guide-to-becoming-your-own-medical-advocate-ddc658a10a57

Lauren Kozlowski, MSW, MPH is serving as the Program Coordinator for MotherToBaby Georgia. She graduated from Boston University with both a Masters of Social Work and a Masters of Public Health. She has experience working with families in both an educational setting, as well as in housing and health, allowing her to recognize the multiple factors contributing to the ability of women and children to thrive. She enjoys living in Atlanta and exploring what the city has to offer.

About MotherToBaby

MotherToBaby is a service of the Organization of Teratology Information Specialists (OTIS), suggested resources by many agencies including the Centers for Disease Control and Prevention (CDC). If you have questions about exposures during pregnancy and breastfeeding, please call MotherToBaby toll-FREE at 866-626-6847 or try out MotherToBaby’s new text information service by texting questions to (855) 999-3525. You can also visit MotherToBaby.org to browse a library of fact sheets about dozens of viruses, medications, vaccines, alcohol, diseases, or other exposures during pregnancy and breastfeeding or connect with all of our resources by downloading the new MotherToBaby free app, available on Android and iOS markets.

By Ginger Nichols, Licensed Certified Genetic Counselor at MotherToBaby Connecticut

With Birth Defects Prevention Month in full swing, it’s time to focus on Tip #2 for Preventing Birth Defects: Booking a visit with your health care provider before stopping or starting any medicine.

Callers to MotherToBaby often wonder why it’s important to talk with their health care provider before stopping or starting a medication. My most recent caller to MotherToBaby asked this very question.

Maria contacted us at MotherToBaby telling us that she and her partner had decided that they would like to start a family. Like many women, Maria was taking medications for a health condition, and she wanted to learn if it would be OK to use them while trying to get pregnant and during pregnancy. She was planning to stop taking them because she was worried that they could be harmful for her baby. She told me that she felt alone as she faced this decision.

In fact, Maria is not alone; 70 percent of women need to take prescription medication during pregnancy to treat a wide variety of health conditions, like depression, asthma, diabetes, nausea and vomiting of pregnancy and inflammatory bowel disease.. And most women (90 percent) report using over-the-counter medication, vitamins or supplements for overall health or for specific health concerns, such as acne, allergies, colds, constipation, headaches and lice .

Why should you talk with you health care provider before starting or stopping taking medication?

Here’s why it’s important to check with your providers about taking medications and supplements before and during pregnancy:

• Some medications or herbal products can make it harder to get pregnant. And some medications can help you get pregnant.
• In some cases, stopping a medication and having an untreated medical condition may be more of a concern for pregnancy than the medications used to treat it. If a medicine can be harmful during pregnancy, your provider may want to switch you to one that’s safer for your baby. But some medications are necessary, even if they may be risky for your baby. You and your provider can talk about all your treatment options to make the best decision for you and your baby. Some medications can cause you to go through withdrawal (have unpleasant physical and/or mental symptoms) if you stop suddenly (also called “cold turkey”). If you and your provider decide to stop a treatment, you may need to stop taking the medicine slowly over time rather than stopping all at once.
• Some medications may need to be increased or decreased during pregnancy in order to continue working properly.
• Some vitamins and supplements may have too much or too little of the nutrients that you need during pregnancy. You may need to adjust the amount you take.
• Supplements and herbal products are not regulated by the Food and Drug Administration. There are no standards for ingredients and strength, and most have been poorly studied regarding their safety for use in a pregnancy.

Now that you know why it’s important to check on the safety of medication before and during pregnancy, what’s next?

• Whether you are planning a pregnancy or currently pregnant, talk to your health care providers before starting any medication (prescription or over-the-counter), vitamins or herbal products.
• Don’t stop taking your prescription medication unless your health care provider says that it is OK.
• Make appointments with your health care providers to review medications they prescribe, and make an appointment with your prenatal provider. If you are planning a pregnancy, talk with your providers before you get pregnant; and talk with them again as soon as you find out that you are pregnant.
• Tell your provider about any medicine you take, including medications that you only use once in a while, like seasonal allergy medication or rescue inhalers. Tell them about over-the-counter medicines, supplements and herbal products, too. A product may be made from herbs if it has word on the label like indigenous or tribal medicine, traditional Chinese medicine, natural remedies, herbal supplements, nutritional shakes, essential oils and tinctures.
• Start taking a prenatal vitamin as soon as you stop your birth control. Talk to your provider about which prenatal vitamin to take.

How can you get ready to talk to your providers about medication and pregnancy?

• Prepare and bring with you a list of all the medications and supplements that you take, including the ones you may only take occasionally.
  • Bring all pill bottles/boxes with you to the appointment so your provider can check on the active ingredients.
  • For each medication/supplement on your list, include information on:
    • Dosage (how much you take),
    • Frequency (how often you take it), and
    • Indication (why you are taking it).
• Some medications can stay in the body for a long time. If your treatment plan includes stopping a medication before getting pregnant, discuss the timing of when you should stop.
• There may be alternative treatments that work just as well for you and are better options during pregnancy and breastfeeding.
  • Ask about alternative treatments. Find out if you can try them out before pregnancy to see if they will work for you.

• Talk about the right prenatal vitamins with the right amount of folic acid for you.
  • Some medications can affect how your body uses folic acid, which is important for pregnancy.
  • Ask your prenatal provider to prescribe you a prenatal vitamin to make the choice easier.

After our call, Maria felt more comfortable in learning about her medications and questions she should have ready to discuss with her providers about the best way to treat her medical condition throughout her pregnancy.

Remember, just like Maria, you are not alone. MotherToBaby is here to help you and your providers work together to make informed decisions about your medication options for pregnancy and breastfeeding.

Ginger Nichols is a licensed certified genetic counselor based in Farmington, Connecticut. She currently works for MotherToBaby CT, which is housed at UCONN Health in the Division of Human Genetics, Department of Genetics and Genome Sciences. She obtained her Bachelor of Science degree in Biology and Sociology from Juniata College and her Master’s Degree in Medical Genetics from the University of Cincinnati. She has a special interest in occupational and environmental exposures.

About MotherToBaby

MotherToBaby is a service of the Organization of Teratology Information Specialists (OTIS), suggested resources by many agencies including the Centers for Disease Control and Prevention (CDC). If you have questions about exposures during pregnancy and breastfeeding, please call MotherToBaby toll-FREE at 866-626-6847 or try out MotherToBaby’s new text information service by texting questions to (855) 999-3525. You can also visit MotherToBaby.org to browse a library of fact sheets about dozens of viruses, medications, vaccines, alcohol, diseases, or other exposures during pregnancy and breastfeeding or connect with all of our resources by downloading the new MotherToBaby free app, available on Android and iOS markets.

Selected References:

• Bohio R, et al. 2016. Utilization of over the counter medication among pregnant women; a cross-sectional study conducted at Isra University Hospital, Hyderabad. J Pak Med Assoc. 66(1):68-71.
• Centers for Disease Control and Prevention (CDC). 2018. Treating for Two: Medicine and Pregnancy. https://www.cdc.gov/pregnancy/meds/treatingfortwo/facts.html [Accessed 11/2018]
• Tasnif Y, et al. 2016. Pregnancy-related pharmacokinetic changes. Clin Pharmacol Ther. 100(1):53-62.
• U.S. Food and Drug Administration (FDA). 2018. Medicine and Pregnancy. https://www.fda.gov/forconsumers/byaudience/forwomen/ucm118567.htm [Accessed 11/2018].

By Lori Wolfe, CGC, MotherToBaby North Texas

Nicole called me in tears. She had been trying to become pregnant for the past nine months and was not having any luck. She asked if it could be due to being overweight. As I talked with Nicole, I found out she is about 100 pounds over a healthy weight for her height. As a MotherToBaby specialist, I often talk with women who are trying to become pregnant. It just so happened this question came along as I was reviewing tips for January’s Birth Defects Prevention Month. Tip #4 is: Before you get pregnant, try to reach a healthy weight.

I explained to Nicole that studies have shown that women who are overweight can have a number of different problems trying to become pregnant, but she shouldn’t worry. Many of the problems outlined below can be reversed when healthy eating and exercise are incorporated into her routine. Some of the issues which can result from being overweight while trying to conceive include:

1. An increased chance of having irregular or absent periods, making it difficult to conceive
2. Producing too much estrogen, which can also make it harder to get pregnant
3. An increased chance of having complications during fertility treatments
4. Having polycystic ovary syndrome , a hormonal disorder that is a major contributor to infertility in women of child bearing age

Once they get pregnant, women who are overweight or obese are at a higher risk for the following complications during pregnancy:

• Miscarriage
• Heart disease
• Increased chance for a birth defect in the baby
• Gestational diabetes
• High blood pressure and preeclampsia (a dangerous kind of high blood pressure that can happen during or right after pregnancy))
• Cesarean birth

After discussing all of this with Nicole, her next question to me was what can she do to reduce these possible risks? Fortunately, most women with overweight can expect to have a healthy pregnancy. I explained to Nicole that it is best to talk with her doctor and try to lose weight before becoming pregnant. Losing weight once you are pregnant is not advised. Start now to eat a healthy diet and exercise regularly before pregnancy, and keep this up once you become pregnant.

Healthy eating includes folic acid
Another important Birth Defects Prevention Month tip is Tip #1: Be sure to take 400 micrograms (mcg) of folic acid every day.

We all need folic acid every day in our bodies to help make new cells. Folic acid is a synthetic form of Vitamin B9, also known as folate. It is very important to take enough folic acid just before and during pregnancy. Many studies have shown that taking 400 mcg of folic acid before and early in pregnancy every day reduces the chance that a baby will have serious birth defects of the spine and brain, called neural tube defects (NTDs). This is even more important in women who are overweight as their body requires more folic acid.

Nicole was relieved to hear that her weight didn’t have to be an obstacle and that there were things she could do to increase her chance of becoming pregnant and having a healthy baby. Losing weight, eating healthy foods and daily exercise can increase her chances of becoming pregnant and can decrease her chances of miscarriage, birth defects and other pregnancy problems. She said she will call her health care provider right away to schedule an appointment to talk about everything and was excited that the future looked brighter to one day become a mom!

Lori Wolfe, CGC, is a board certified Genetic Counselor and the Director of MotherToBaby’s North Texas affiliate. MotherToBaby aims to educate women about medications and more during pregnancy and breastfeeding. Along with answering women’s and health professionals’ questions regarding exposures during pregnancy/breastfeeding via MotherToBaby’s toll-free number, text line and by email, Wolfe also teaches at the University of North Texas, provides educational talks regarding pregnancy health in community clinics and high schools.

About MotherToBaby
MotherToBaby is a service of the Organization of Teratology Information Specialists (OTIS), suggested resources by many agencies including the Centers for Disease Control and Prevention (CDC). If you have questions about exposures during pregnancy and breastfeeding, please call MotherToBaby toll-FREE at 866-626-6847 or try out MotherToBaby’s new text information service by texting questions to (855) 999-3525. You can also visit MotherToBaby.org to browse a library of fact sheets about dozens of viruses, medications, vaccines, alcohol, diseases, or other exposures during pregnancy and breastfeeding or connect with all of our resources by downloading the new MotherToBaby free app, available on Android and iOS markets.

Photo Credit: © Bernd Esche | Dreamstime Stock Photos

By Lauren Bryl, MS, Certified Genetic Counselor, MotherToBaby IL

It’s National Birth Defects Prevention Month, and you’ve found yourself here – standing in the pharmacy aisle in search of prenatal vitamins. You think, “I should start taking one of these if I want to have a baby, right? At least that’s what I’ve heard…” Your eyes are swimming and head is spinning with all the options. “Should I choose the old-fashioned tablets, the fruit-flavored gummies, or the minty chewables? With DHA or without? Do I need extra calcium or vitamin D? Is 200% daily value better than 100%? This seems like a good one,” you think to yourself. “Oh wait! Maybe this one is better…” Shelf after shelf of bottles of vitamins and supplements…but which one is right for you?

Give yourself a pat on the back.

First of all – well done, Mama! You’ve already made the most important decision by choosing to kick off your pregnancy journey with a solid supply of vitamins to support a growing baby! But why are prenatal vitamins so important anyway? Well, one of the main reasons is that deficiency of a vitamin called folate (also called folic acid) in very early pregnancy increases the risk for neural tube defects. Neural tube defects are a group of birth defects in which there is an opening in the spine. They include things like spina bifida. While the other vitamins and minerals may also provide benefits to mom and baby, the folic acid in the prenatal multivitamin is one of the most important for birth defect prevention. Taking folic acid prior to and during pregnancy is the best thing we can do to reduce the risk of neural tube defects.

Take a deep breath.

As a prenatal genetic counselor, I’ve had many patients ask me which prenatal vitamin is the best. While there are, of course, many factors that go into making a decision about which prenatal vitamin to take including cost considerations and personal preferences, I’m here to give some thoughts from a medical professional’s perspective. First of all, you may not even have to make this choice yourself. Your doctor may prescribe you a prenatal vitamin with folic acid, so check with her first. But if she tells you to pick something up over the counter, don’t panic.

Check the ingredients and their doses.

The exact vitamins and minerals that you, personally, will need in a multivitamin depends on a few things. One is whether you have any known vitamin or mineral deficiencies or risk factors for such a deficiency. For example, vegans and vegetarians are more likely to have deficiency of vitamin B12, a vitamin found in meat and other animal products. The amounts of vitamins and minerals you receive through your diet should be considered. It is common for women to need extra help getting the recommended amounts of calcium, iron, and vitamin D. The daily recommended intakes for pregnant women over 18 years are 1,000 mg (milligrams) of calcium, 27 mg of iron, and 600 IU (International Units) of vitamin D. Some health care providers will also suggest docosahexaenoic acid (DHA) supplementation of 200 mg per day for those who do not eat fatty fish (like salmon and tuna) at least twice a week.

Regardless of your diet, folic acid supplementation is a must. The natural form of the vitamin found in certain foods (called folate) is not as well absorbed as the supplemental form (folic acid). Because of this, the U.S. Public Health Service recommends that all women of childbearing age take a folic acid supplement of 400 micrograms (0.4 mg) per day. Once you become pregnant, this dosage increases to 600 micrograms (0.6 mg) per day. If you are at higher risk for neural tube defects than the average woman because of family history or another factor, an even higher dosage may be recommended. You should consult with your health care provider for her recommendation.

With vitamins, more is not always better, though. While some vitamins are unlikely to be harmful even if taken at high dosages in pregnancy, this is not true for all. Specifically, very large amounts of supplemental vitamin A have the potential to increase the risk of birth defects and intellectual disabilities. For this reason, it is recommended that vitamin A supplementation not exceed 10,000 IU per day.

Don’t go too far off the beaten path.

Unlike medications and foods, vitamins and supplements are not regulated by the U.S. Food and Drug Administration (FDA). This means that the FDA does not test vitamins and other supplements to ensure that they contain the ingredients written on their labels at the doses indicated. The FDA also does not test for contamination with other, potentially harmful ingredients in vitamins and supplements. It is the responsibility of those who make the vitamins to perform these types of tests to ensure quality and safety.
Does this mean that most vitamins are dangerous? No, but it does mean that it may be safer to choose a widely available multivitamin rather than one produced by a small, specialized manufacturer. Companies with wider distribution are under more pressure to produce a safe product than those whose products you may only be able to buy in a specialty store or through their website. If in doubt, speak with your healthcare provider or a pharmacist.

Choose what works for you.

While perhaps the most obvious point, choosing a vitamin that you will actually take is arguably the most important one as well. The perfect multivitamin won’t do you any good if it is gathering dust in the medicine cabinet. If even just the thought of swallowing a pill half the size of a golf ball every morning has you queasy, you could consider trying a liquid or chewable form. Iron in your prenatal vitamin giving you constipation? Ask your health care provider if it’s necessary that you have iron supplementation if you receive adequate amounts through the foods that you eat.

So if you find yourself in the pharmacy aisle overwhelmed with all the multivitamin options, try not to stress! Remember these tips and save that energy for other difficult decisions down the road…like choosing a preschool!

Lauren Bryl, MS, is a certified genetic counselor, licensed in the state of Illinois. She graduated from Haverford College with a Bachelor’s degree in molecular biology and earned a Master’s of science in genetic counseling at Northwestern University. Located out of Chicago, Lauren serves as the coordinator for MotherToBaby Illinois. Since 2011 she has counseled women, their family members and their healthcare providers regarding the effects of exposures during both pregnancy and lactation. In addition to her role with MotherToBaby, Lauren is a clinical genetic counselor at Insight Medical Genetics where she provides both reproductive and hereditary cancer risk counseling.

MotherToBaby is a service of the international Organization of Teratology Information Specialists (OTIS), a suggested resource by many agencies including the Centers for Disease Control and Prevention (CDC). If you have questions about alcohol, medications, vaccines, diseases, or other exposures, call MotherToBaby toll-FREE at 866-626-6847 or try out MotherToBaby’s new text counseling service by texting questions to (855) 999-3525. You can also visit MotherToBaby.org to browse a library of fact sheets.

References:

American College of Obstetricians and Gynecologists; American Academy of Pediatrics. Guidelines for Perinatal Care. 6th ed. Washington, DC: American College of Obstetricians and Gynecologists; 2007. Elk Gove Village, IL: American Academy of Pediatrics; 2007.

Centers of Disease Control and Prevention (CDC). Use of dietary supplements containing folic acid among women of childbearing age—United States, 2005. MMWR Morb Mortal Wkly Rep. 2005;54(38):955-958.

De-Regil LM, Fernandez-Gaxiola AC, Doswell T, Pena-Rosas JP. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database Syst Rev. 2010;(10):CD00795.

Food and Nutrition Board, Institute of Medicine, National Academy of Sciences. Recommended Dietary Allowance and Adequate Intake Values, Vitamins and Elements. Institute of Medicine Web site. www.iom.edu/Activities/Nutrition/SummaryDRIs/DRI-Tables.aspx. Updated September 12, 2011. Accessed January 5, 2016.

Koebnick C, Hofmann I, Dagnelie PC, et al. Long-term ovo-lacto vegetarian diet impairs vitamin B-12 status in pregnant women. J Nutr. 2004;134(12):3319-3326.

Office of Dietary Supplements, National Institutes of Health, U.S Department of Health and Human Services. Dietary supplements: What you need to know. National Institutes of Health Web site. https://ods.od.nih.gov/HealthInformation/DS_WhatYouNeedToKnow.aspx Updated June 17, 2011. Accessed January 5, 2016.

By Patricia Olney, MS, CGC

“I think I’ll go out to the garage and work on the car for a while.” This was Daniel’s reaction after the birth of his second child with spina bifida. His wife, Rebecca, cried uncontrollably.
Sarah was born in 1989 after a healthy pregnancy, filled with the anticipation of first time parents. The nursery was decorated, the crib was set up, and an overnight bag packed. The only thing Rebecca didn’t anticipate was a preterm delivery, c-section, and a baby born with a severe birth defect.

My oldest son was also born in 1989. Rebecca and I shared the same excitement, dreams, and hopes for a healthy baby. We ate a balanced diet, took our prenatal vitamins, exercised regularly, and attended childbirth classes. We talked about whether we wanted an epidural or not, a home birth, or delivery by a midwife. Our husbands advocated for a hospital birth…just in case there was a problem during delivery.

Rebecca remembers the details as if it happened yesterday. On the eve of March 24th, Rebecca’s amniotic sac ruptured. Her first thought was “Oh no, I wet the bed!” She didn’t realize it was not her urine, but amniotic fluid. She woke Daniel and frantically called her OB. On the way to the hospital, Rebecca was sobbing. She was scared, and worried. What if all the amniotic fluid leaked out? Daniel tried to be reassuring—her OB was a very competent doctor. Sarah was born the next morning by c-section at 34 weeks and quickly whisked away to the NICU by the neonatologist. The preterm delivery was now the least of their worries. Their baby was born with spina bifida.

Rebecca and Daniel were shocked, then angry, and found themselves searching for answers. The book “What to Expect When You’re Expecting” didn’t cover having a baby with a birth defect. After a long discussion with the neonatologist, they learned Sarah had a type of neural tube defect called myelomeningocele. They heard the words…”she may have neurologic deficits below the level of the defect, and may develop hydrocephalus.” Sarah eventually developed hydrocephalus, wasn’t able to walk, and didn’t have bowel or bladder control.

Spina bifida is a type of neural tube defect (NTD) that affects the spine, or spinal cord. With this condition, the neural tube does not close completely. Myelomeningocele is the most serious type of spina bifida—a sac of fluid with part of the spinal cord comes through an opening in the baby’s spine damaging the nerves. Neural tube defects happen in the first month of pregnancy, often before a woman even knows that she is pregnant.

At first, Rebecca and Daniel couldn’t imagine having another child since Sarah required so much care, but two years after Sarah’s birth, Rebecca and Daniel decided they wanted Sarah to have a sibling. They consulted their OB and decided to have a blood test that screens for neural tube defects called maternal serum AFP. They didn’t want to have an amniocentesis, a more sensitive test for NTDs, because of the small chance of miscarriage. Plus, they never thought it could happen twice.

Emma was born in June of 1991 with a less severe type of spina bifida, lower on her spine than Sarah’s. At that time, the maternal AFP blood test detected about 80-85% of NTDs. Prenatal ultrasound may not detect one that is small, and covered with skin. In general, when the opening is lower along the spine, fewer nerves are damaged, resulting in less serious disability.

A worldwide effort to prevent recurrence and occurrence of neural tube defects began in the early 1990’s. Women who had a pregnancy that resulted in a baby with an NTD have an increased risk of 2-3% to have another affected pregnancy. In August 1991, U.S. Public Health Service provided guidelines for women who already had a pregnancy affected with a NTD. The guidelines called for consumption of 4 milligrams (4000 micrograms) of folic acid daily beginning one month before trying to get pregnant and continuing through the first three months of pregnancy (CDC: MMWR; Aug. 2, 1991).

Folic acid is a water-soluble B vitamin. Foods that are naturally high in folic acid include leafy vegetables, fruits (such as bananas, melons, and lemons) beans, yeast, mushrooms, meat (such as beef), orange juice, and tomato juice. Most women would not consume enough folic acid by diet alone.

In order to reduce the frequency of NTDs and their resulting disability, in September, 1992, the U.S. Public Health Service recommended:

“All women of childbearing age in the United States who are capable of becoming pregnant should consume 0.4 mg (400 micrograms) of folic acid per day for the purpose of reducing their risk of having a pregnancy affected with spina bifida or other NTDs. Because the effects of higher intakes are not well known but include complicating the diagnosis of vitamin B12 deficiency, care should be taken to keep total folate consumption at less than 1 mg per day, except under the supervision of a physician. Women who have had a prior NTD-affected pregnancy are at high risk of having a subsequent affected pregnancy. When these women are planning to become pregnant, they should consult their physicians for advice (CDC MMWR: September 11, 1992).”

In 1998, the Institute of Medicine’s Food and Nutrition Board added this to the recommendation:

“To reduce their risk for an NTD-affected pregnancy, women capable of becoming pregnant should take 400 micrograms of synthetic folic acid daily, from fortified foods or supplements or a combination of the two, in addition to consuming food with folate from a varied diet.”

Since 1998, folic acid has been added to cold cereals, flour, breads, pasta, bakery items, cookies, and crackers, as required by federal law. CDC reports that fortification is now mandatory practice in 57 countries and voluntary in many others. Three key results are:

• World-wide, at least 22,000 fatal or disabling birth defects such as spina bifida are prevented annually. That’s 60 babies a day.
• Countries around the world report 30% to 70% declines in NTDs after fortification begins.
• Countries save millions of dollars in healthcare cost when spina bifida is prevented.

Since one-half of U.S. pregnancies are unplanned and because these birth defects occur very early in pregnancy (3-4 weeks after conception), CDC recommends all women of childbearing age consume folic acid daily. CDC estimates that most of these birth defects could be prevented if this recommendation were followed before and during early pregnancy. Rebecca and Daniel could never change what happened to their babies, but sharing their story may help spread the word about the benefits of folic acid.

Questions? For your FREE personalized risk assessment, call MotherToBaby toll-FREE (866) 626-6847 or email an expert here. MotherToBaby is a service of the international non-profit Organization of Teratology Information Specialists (OTIS), a society that supports and contributes to worldwide initiatives for teratology education and research. MotherToBaby affiliates and OTIS are suggested resources by many agencies, including the Centers for Disease Control and Prevention (CDC), and are dedicated to providing evidence-based information to mothers, health care professionals, and the general public about medications and other exposures during pregnancy and while breastfeeding. Learn more at MotherToBaby.org.

Patricia Olney, MS, is a certified genetic counselor and pregnancy risk specialist at MotherToBaby Georgia, Emory University. She received her masters degree at the University of California, Berkeley and has practiced genetic counseling for more than 25 years. MotherToBaby GA is funded by the Georgia Department of Behavioral Health and Developmental Disabilities.