Maternal-Fetal Medicine Specialist and social media health educator, Dr. Shannon Clark of @babiesafter35 joins host Chris Stallman to discuss high risk pregnancies and top ways to prevent birth defects.
By Neda Ebrahimi , Teratogen Information Specialist, Motherisk
As a counselor with Motherisk, the Canadian partner of MotherToBaby and a service of the Organization of Teratology Information Specialists (OTIS), I hear many stories from women about pregnancy. Some of those stories strike cords with me. Their urgency and desire to make the healthiest decisions possible for their future children is both understandable and admirable. In honor of National Multiple Sclerosis Awareness Month, I give you Nina’s story.
Nina’s Story
“I’m 31 years old, and I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), when I was only 22. My first relapse was scary. I was writing my finals, and 2 days before my last final, I lost sight completely in one eye, and my legs felt so week and wobbly that I couldn’t stand even for a second. After going to the hospital and receiving several courses of steroids over 10 days, I started to improve but it took 2 months for my symptoms to fully resolve. And then, everything went back to normal, as if nothing had ever happened. I received my diagnosis several months after, and it felt like a death sentence. I had 2 more relapses before my doctor put me on disease modifying drug (DMD), and I started with Infterferon-B1a. Over the last 8 years, I only experienced 5 more relapses. The last relapse I had was only a few months ago; I lost sight in my left eye, and numbness that ran from my face to my toes on just the right side of my body. I have always been able to work full-time except when I’m experiencing a relapse, for which I’ve had to take a month off. I am a dentist, so not surprisingly I can’t carry out my job when I’m experiencing numbness in my hand. I met John 5 years ago at the MS clinic I used to visit. He was a nurse there. We fell in love, and despite of my illness he proposed to me last year, and we talked about having a family, with two children, hopefully one boy and one girl, and living happily ever after. It didn’t initially worry me that one day I may want children. John is crazy about kids, and I feel my maternal instincts kick in every time I hold a baby. Since we got married, my anxiety has been increasing proportionally to my yearning for having a child. I know my MS can’t be cured, at least not now, I know it can get worst over time, and eventually I may need support to carry out even simple tasks. Or Maybe I won’t, and I would be one of the few who never enter the progressive state. I don’t know if I’ll be able to care for a baby and meet his or her demands. What will happen after my pregnancy? I really don’t want to experience another relapse after I deliver. How am I going to manage my illness, and what will happen if I need to came off my DMD when I’m pregnant or breastfeeding? There are so many questions, and I don’t know who to turn to.”
Nina is not alone in her thirst for answers. MS is an autoimmune neurological disease with very different presentation. No two MS patients are exactly the same and symptoms can vary from just the occasional mild tingling in the finger tips to more severe symptoms that render the patient unable to walk or stand for several weeks. With Relapsing Remitting MS accounting for 85% of all MS cases, most patients will undergo a remissive state after an attack, and will resume their daily life with little or no hindrance. Some patients will continue to have modest symptoms during the remissive state which they learn to adapt to and manage by different medications and or lifestyle changes. As there are no current cures for MS, many MS patients live for decades with this disease, and must find the means to maintain a high quality of life as the disease progresses, which can be challenging in the later stages of the disease.
MS impacts many more women than men with a 3:1 ratio in North America. As the disease onset occurs during the reproductive ages, many women with MS face the dilemma of pregnancy at some point during their lives. Young women, like Nina, with MS planning pregnancies, have many questions. Because the disease presentation and progression varies from person to person, there is no exact answer and treatment and management must be tailored to the specific person’s need. However, I’d like to address some of the most common questions to help all of the “Ninas” out there:
1. “Would the disease adversely impact the pregnancy and my developing baby”?
Up until the late 1950s, women with MS were advised to terminate their pregnancies. With our advancement in the field, we know that this is almost never necessary. Many women with MS continue to have healthy babies, and research shows that there is no increased risk for having a baby with a structural malformation or developmental delay and many deliver healthy babies with no major complications. Although there is a trend toward lighter weight babies, the birth weight percentile remains in the normal range for most. Another observation has been the higher rate of miscarriage in the MS population with mixed results from different studies. The reason for this is not well understood, but the majority of miscarriages are in early pregnancy. While miscarriage rates in the general population are around 10-15%, in women with MS the rates are closer to 20%-30%. With successful conception, the chance of delivering a healthy baby at term is high, and women with MS should be assured that their disease is unlikely to cause harm to the developing baby.
2. “Would my baby also have MS”?
There is a complex interplay between genetics and environment leading to MS. While the risk of getting MS in the general population is 0.3%, having a parent with MS will increase this risk by almost 15 times. So children of women with MS may have a 3% to 6% chance of developing MS later in life, but the environmental and lifestyle factors may play the ultimate role in disease manifestation. Hence despite the genetic contribution, the risk for your baby developing MS remains small and can potentially be modified.
3. “If I stop my DMD when planning, what are the risks of having a relapse while I try to conceive?”
Depending on how long it takes to conceive, the drug free period prior to pregnancy may be a risky period for experiencing a relapse. While some women conceive after just one cycle, many will conceive after several months of actively trying to become pregnant. It will take 1 to 3 months (depending on the drug) to fully clear the system, and during this time, some may experience disease activity. If prior to starting the DMD you had very active disease, there is a risk that you’ll experience a relapse when you stop the medication, especially if it takes more than 3 months for you to conceive. The decision to continue DMDs is highly individualized and is determined on a case-by-case basis. You and your neurologist will determine the best mode of action.
4. Would having a pregnancy make my MS progress faster?
Pregnancy has not been shown to speed the disease process. In fact, pregnancy is a state of remission for many women with MS, and a time for optimal wellbeing. It is well established that relapse rates reduce by 70% by the third trimester of pregnancy compared to the year prior to pregnancy. However after delivery the relapse rate increases, with 60% of women experiencing a relapse in the first 3 to 6 months postpartum. While the risk is increased in the postpartum period, the course of MS tends to return to its baseline, and no worse than what it was in the year prior to pregnancy. Some studies have found a protective effect with pregnancy, with a delay in the long-term disease progression; however, more studies are needed to confirm this finding.
5. Would I be able to continue my DMD through the pregnancy?
Although many women with MS go through remission in the pregnancy, some will continue to experience disease activity especially in the first two trimesters. The decision to continue DMDs is dependent on several factors, including the type of medication, disease activity in the year prior to pregnancy, and the type of control achieved with the given DMD. The use of glatiramer, Interferon Beta 1a/1b, in pregnancy have not been associated with an increased risk for malformations and if you achieved great control with these drugs, and are at a high risk of relapsing, your physician may consider continuing your therapy through the pregnancy. The newer drugs, especially the oral DMDs, have not been well studied, therefore it is recommended that you discuss with your neurologist the best plan for the course of your pregnancy. There are ongoing research studies looking at the outcome of pregnancies following exposure to these medications. MotherToBaby and its affiliates are engaged in such studies. For study information or for the most up-to-date information about newer medications used to treat MS during pregnancy, call from anywhere in North America toll-FREE 866-626-6847.
6. What if I have a relapse during pregnancy?
While relapses during pregnancy are uncommon, they may happen, and can be quite severe for some women. Steroids are usually used to treat those relapses, although some success has been shown with IVIg therapy as well. A women that experiences a severe debilitating relapse during her pregnancy, may require the standard steroid therapy, while a women that experiences a mild flare-up may choose, in collaboration with her physician, to abstain from treatment. Systemic steroid use in the first trimester has been associated with a very small risk for cleft lip and palate, and use in the second half of pregnancy may increase the risk for having a smaller baby and for delivering prematurely (before 37 weeks gestation). However, it is recommended that you speak with your health care provider before you stop or change any medication. The benefits of taking a steroid and treating your condition should be weighed against these small possible risks. For more information, check out this fact sheet online: https://mothertobaby.org/fact-sheets/prednisoneprednisolone-pregnancy/ or call anywhere in North America toll-FREE 866-626-6847.
7. Should I breastfeed or start my DMD right after delivery?
The postpartum period is a period with a high risk of experiencing relapses. Data on whether breastfeeding has protective effect has conflicting results. Some studies suggest a protective effect, possibly due to the delay of menses returning, while others show no impact. Information on safety of DMDs in the breastfeeding period are scarce, however given the large molecule size of glatiramer acetate, and Interferons, it is unlikely any will transfer into milk. If they do, they are likely not to be absorbed from the baby’s gastrointestinal tract. There is no information regarding other DMD usages during lactation. The benefits of breastfeeding baby are numerous, but, ultimately, your functionality and ability to care for your child take priority. The decision to breastfeed or not may depend on your ability to breastfeed, especially since the demands of a newborn and the hormonal changes in the postpartum period can be very taxing on your energy levels and if you experience chronic fatigue due to your condition. Thus, if a woman (while consulting her physician) decides to breastfeed she may do so. However, if she needs to restart her DMD, currently she may be advised to stop breastfeeding.
Bottomline: While having MS poses physical and emotional challenges, it does not jeopardize a woman’s capacity to motherhood. With careful planning and close collaboration with your doctors and healthcare providers, and especially with some support from family and friends, you will be able to have successful pregnancies, healthy children, and out of control teenagers, just like any other woman. So if becoming a mother is something you have always wanted and looked forward to, having MS is more of a bump in the road rather than a life sentence, and with some maneuvering you can achieve your dreams. Happy parenthood!
Neda Ebrahimi is a research associate and counselor at the Canadian Motherisk program, a non-profit MotherToBaby/OTIS affiliate that aims to educate the public about medications and more during pregnancy and breastfeeding. The Motherisk program is also a center for teaching and clinical research in the area of exposures in pregnancy and breastfeeding. Neda is pursuing her PhD in the field of Multiple Sclerosis in Pregnancy. To learn more about her work and about her study, email her at neda.ebrahimi@sickkids.ca or call 416-813-7654 ext. 204928. You can also call the Motherisk Helpline at 1-877-439-2744 and ask to be referred to the MS study.
MotherToBaby and its affiliates are services 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 MS, medications or other exposures during pregnancy or breastfeeding, call toll-FREE 866-626-6847 or visit MotherToBaby.org.
MotherToBaby offers unparalleled resources for health professionals, including evidence-based patient education materials, no-cost teratogen information services, and convenient patient referrals into our observational pregnancy studies. Here are some of the questions health providers most frequently ask about us.
What is MotherToBaby?
MotherToBaby is a service of the non-profit Organization of Teratology Information Specialists (OTIS), a professional scientific society made up of world-renowned birth defects experts. MotherToBaby is dedicated to providing no-cost evidence-based information to mothers, health care professionals, and the general public about medications and other exposures during pregnancy and while breastfeeding. We are also dedicated to advancing knowledge about the impact of medication and vaccine exposures during pregnancy through our rigorously designed observational MotherToBaby Pregnancy Studies.
OTIS and its information service, MotherToBaby, are suggested resources by many agencies including the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration’s Office of Women’s Health. More than 100,000 people and their health providers seek information about birth defects prevention from OTIS and MotherToBaby every year.
What information can MotherToBaby provide me or my patients about medications, vaccines, and other exposures during pregnancy?
Evidence-based Teratogen Information: MotherToBaby provides up-to-date, evidence-based information about the risks of medications, chemicals, herbal products, substances of use, maternal health conditions, occupational exposures, and much more during pregnancy and while breastfeeding. Our information services are available at no-cost to you and your patient, and can be accessed by phone, text, email, and chat.
Patient Education Materials: The experts at MotherToBaby have created fact sheets that rely on current medical and scientific literature to answer frequently asked questions about exposures during pregnancy and breastfeeding. MotherToBaby Fact Sheets are available in both English and Spanish and can be downloaded at no cost.
Literature for Your Office: MotherToBaby offers FREE brochures, patient referral cards and tear pads, and other materials for your office, as well as materials that you can share with your colleagues. These materials can be viewed and orders can be placed using our online form.
What are MotherToBaby Pregnancy Studies?
MotherToBaby Pregnancy Studies are conducted by OTIS and performed at the University of California San Diego under the leadership of renowned perinatal epidemiologist Christina Chambers, PhD, MPH. The studies focus on evaluating the safety (or risk) in pregnancy of medications used to treat a variety of medical conditions, as well as the safety (or risk) of vaccines in pregnancy. All of our studies are strictly observational; patients do not make any changes to their healthcare regimens unless you as their provider direct them to do so.
As a healthcare provider who treats patients of reproductive age, you may be as frustrated as we are by the lack of data regarding the effects of many medications and vaccines on pregnancy outcomes. Our rigorously designed studies aim to provide this much-needed information, and they rely on your patient referrals to do so.
What studies is MotherToBaby currently conducting?
We are currently conducting studies on the following:
In addition to enrolling people who are pregnant who have the above medical conditions or vaccine exposures, we are also looking for healthy people who are pregnant or people who are pregnant and have not received the vaccines listed above to serve as controls for our studies.
What will I be required to do?
You can help support our efforts by referring your patients to our studies. People self-enroll, so after you refer a patient, nothing further is required from you.
Will study participation interfere with my ability to treat my patient?
No. All of our studies are strictly observational; patients do not make any changes to their healthcare regimens unless you as their provider direct them to do so.
The lack of data regarding the effects of medications on pregnancy outcomes is troubling. We are desperately trying to fill these information gaps; however, we cannot obtain the necessary data without your help. Consider us a partner so we can help provide you the critical information that you need to counsel your patients when they become pregnant.
What are the benefits of referring my patient to a MotherToBaby Pregnancy Study?
How can I refer a patient to a MotherToBaby Pregnancy Study?
Our easy-to-read Fact Sheets on exposures in pregnancy and breastfeeding are available in English and Spanish.
Order free materials for patients and health providers about our information service and pregnancy studies.
Need to give your patient a personalized assessment on an exposure risk or connect them to our pregnancy studies?
MotherToBaby supports dermatologists in managing skin conditions during a patient’s reproductive years. We understand the challenges that you face when deciding on treatment courses when your patient is pregnant or breastfeeding. Whether tending to a patient with a pre-existing illness like psoriasis or atopic dermatitis, or a pregnancy dermatosis like PUPPP, our resources will help you weigh the risks and benefits to both your patient who is pregnant and their baby as you determine a treatment plan that maximizes disease management and minimizes maternal and fetal/infant risk.
We are also dedicated to furthering the information and understanding of medication safety in pregnancy through our observational MotherToBaby Pregnancy Studies. We are proud to lead more than half of all Food and Drug Administration (FDA)-mandated pregnancy registries conducted in the U.S., including studies on psoriasis and atopic dermatitis treatments. MotherToBaby Pregnancy Studies are rigorously designed cohort studies that aim to provide critically needed product safety information – and your patient referrals make all the difference. With your referral, you are helping us generate data that will lead to improved product safety information in pregnancy, thereby providing you and your patients with the evidence you need to make more informed treatment decisions.
Dermatologists are frequently faced with questions about the safety of commonly prescribed topical and systemic medications during pregnancy and lactation from [people] of childbearing age who are pregnant, considering pregnancy, or breastfeeding. Safety data, particularly regarding medications that are unique to dermatology, can be difficult to locate and are not consolidated in a single reference guide for clinicians.
— Murase et al. J Am Acad Dermatol. 2014;70(3):401.e1-415.
Explore how we can help you and your pregnant and breastfeeding patients by providing no-cost exposure risk assessments, patient education materials, observational studies to monitor pregnancy outcomes, and more.
We provide no-cost, evidence-based info on exposures during pregnancy or breastfeeding by phone, text, email, and chat.
We offer free patient education materials and provider resources for our information service and pregnancy studies.
Download our LactRx app for on-the-go access to the Library of Medicine’s LactMed database for current information on dermatology medications as well as other drugs and vaccinations to which breastfeeding mothers may be exposed.
MotherToBaby supports obstetricians and gynecologists (OB/GYN) as they navigate environmental exposures in the treatment of preconception, pregnant, and lactating patients. We understand the challenges that you face when counseling patients on exposure risks and when deciding on treatment courses during pregnancy or lactation. Our resources help you weigh the risks and benefits of an exposure to both your patient who is pregnant and their baby, allowing you to educate your patient about how best to minimize maternal and fetal/infant risk.
We specialize in evaluating teratogenic risks associated with maternal, household, and environmental exposures, including but not limited to medications, vaccines, substances of use, maternal health conditions and infections, workplace exposures, and much more. We provide no-cost, evidence-based information in a patient-friendly manner that will help you and your patient make informed decisions for the health of both the person who is pregnant and their baby.
We are also dedicated to furthering the information and understanding of medication safety in pregnancy through our observational MotherToBaby Pregnancy Studies. We are proud to lead more than half of all Food and Drug Administration (FDA)-mandated pregnancy registries conducted in the U.S. MotherToBaby Pregnancy Studies are rigorously designed cohort studies that aim to provide critically needed product safety information – and your patient referrals make all the difference. With your referral, you are helping us generate data that will lead to improved product safety information in pregnancy, thereby providing you and your patients with the evidence you need to make more informed treatment decisions.
In a national online survey of ACOG members, Stotland et al. found that 78% of obstetricians agreed that they can reduce patient exposures to environmental health hazards by counseling patients, but barriers to counseling included a lack of knowledge of and uncertainty about the evidence.
Explore how we can help you and your pregnant and breastfeeding patients by providing no-cost exposure risk assessments, patient education materials, observational studies to monitor pregnancy outcomes, and more.
| Ep. 51: High Risk Pregnancy and Birth Defects Prevention January 26, 2023 |
page {PAGENO} of {PAGETOTAL} |