By: MSF Staff and reviewed by the MSF Medical Advisory Board
The decision to start a family is a life-changing one. For any couple, it is difficult to speculate how their relationship, employment and financial status might change over the years. Speculation is a gamble and there are no guarantees. For those couples that must factor in the additional uncertainties of MS, both speculation and decision-making grow more complex. Nevertheless, there are steps that you and your partner can take that will enable you to make intelligent and realistic decisions.
Ideally, the decision to start a family should be a team effort. Parenting is a lifetime commitment and thoughtful consideration must be given to the various challenges that could arise as a result of MS. Worsening disability could change your financial status. Fatigue could be troublesome, particularly when caring for a baby or toddler.
With a little flexibility and a creative, proactive approach on the part of both parents, solutions to these and similar problems are within reach. For example, if you were not well for a period of time, would your partner be willing to take over household chores and parenting responsibilities as needed? Do you have caring friends or family members nearby to offer support and assistance throughout your labor, delivery, and postpartum period? Having a support system in place can make a tremendous difference.
Attend a local MS support group meeting. Talk and listen to others who are successfully parenting with MS. What are their challenges? How are they handling them? What have they learned?
Together with your partner, visit your neurologist and discuss current disease activity and possible progression. Ask questions. In her book, Multiple Sclerosis: The Questions You Have - The Answers You Need, Rosalind Kalb, Ph.D. writes, "Historically (and occasionally even now), couples have found that some members of the medical profession discourage pregnancy, and even parenting for a woman who has MS. We now know that there is no medical reason for women with MS to avoid pregnancy." If you decide to start a family and your neurologist is not supportive, find another one. A supportive obstetrician is also important. As a team, these professionals can provide the care and encouragement that you and your baby deserve.
Will My Baby Develop MS?
The risk of your child developing MS, although higher than the general population, still remains low. "While there is some increase in the risk to children with a family history of the disease, the actual risk is small (95 percent chance that MS will not occur). At the present time there is no way to diagnose MS or assess the MS risk in a particular infant before or after birth," asserts Dr. Kalb.
Will MS Affect My Pregnancy?
Statistics show that only ten percent of women experience relapses during their nine months of pregnancy. Research indicates that women with MS who give birth show no signs of increased disability over their lifetime than women with MS who never become pregnant. One study even suggests that women with MS who become pregnant may be less likely to develop a progressive course of the disease when compared to women with MS who choose to forego having children.
For reasons still not entirely understood, pregnancy allows the body to enter a mildly immunosuppressive state. This means that during pregnancy, a woman naturally achieves the immunosuppressive state that is usually achieved artificially with some medications. This could be the reason for reduced disease activity during pregnancy. Many women with MS feel exceptionally well, especially during their third trimester, when relapse rates are at an all-time low.
On the other hand, fatigue, especially during the first three months, constipation, and urinary tract infections may be bother-some for some women. Your obstetrician may suggest using a stool softener to alleviate constipation or having regular urine cultures to detect potential infections.
Can I Take Medication?
Generally, there are two categories of medication used to treat MS. There are those that are used to treat symptoms, such as bladder infections. These medications are often safe to continue during pregnancy, but always check with your doctor first. Then there are the immunomodulating agents that actually reduce disease activity. These include Avonex®, Betaseron®, Copaxone®, and Rebif®, commonly called the ABCR drugs. The safety of these drugs during pregnancy, as well as their affect on the unborn baby, has yet to be determined. Recent research suggests that Copaxone may carry a reduced risk to the fetus\ in animals. More research is needed, however, to determine the effects of these drugs on the unborn human child. There is also some concern that these drugs could increase the risk of miscarriage.
As soon as you begin trying to conceive, talk with your doctor about your medications. Unless you plan to breastfeed your baby, you may, with your doctor's consent, resume your medication immediately after delivery.
Will MS Influence My Labor and Delivery?
MS does not appear to influence the course of pregnancy, labor or delivery. In fact, there is no reason to expect your labor to be significantly different from that of a woman without MS. An injection of anesthetic into the lumbar area of the spine (an epidural) to alleviate pain during labor is common and usually safe. General anesthesia is also considered safe. Many couples enroll in prenatal classes, or practice the Lamaze technique. This breathing and relaxation method has been widely practiced since the early 1950s. Meet with your doctor or anesthesiologist to explore your options.
Women with substantial lack of sensation or paralysis may be closely monitored during the ninth month, just in case they are unable to recognize the onset of contractions or need labor to be induced after dilation of the cervix begins. Should muscle weakness or fatigue occur after several hours of pushing, the delivery may be assisted with forceps, a suction cup on the baby's head, or a Caesarian section. If leg control or spasticity is a problem, an epidural can be beneficial.
Inform your obstetrician of any steroid use, particularly over the past 12 months. If you have taken steroids on a regular basis during that time, you will need steroid medication during labor.
What About the Postpartum Period?
Careful planning for the postpartum period can minimize stress, fatigue, and your risk of having an exacerbation. Exhaustion is typical for new mothers, but a new mother with MS must not ignore this fatigue. It is important to focus only on caring for yourself, resting, and feeding your new baby. Other household tasks, shopping, social events, and even some of the infant care should be delegated to others.
During the initial six months after delivery, 29 percent of women will experience a relapse. Due to this heightened risk, you may choose to start or restart one of the immunomodulating drugs right after your baby is born. If you are employed outside the home, you may require a longer maternity leave than the average six to eight week period that is customary in the U.S., because relapses occur most frequently between the fourth and eighth week of the postpartum period.
In the book, Mother To Be: A Guide to Pregnancy and Birth For Women with Disabilities, Judith Rogers and Molleen Matsumura interviewed Margie, a 27 year-old woman with MS, to discover the changes she experienced throughout her pregnancy, labor, delivery, and postpartum period.
"Margie had MS before she became pregnant. Her symptoms before pregnancy were weakness in the arm and leg on one side, and occasional bladder problems. About her first pregnancy Margie said, 'I felt great while I was pregnant! I enjoyed feeling so healthy, and I had a positive outlook on life'."
The authors go on to explain that, "After her first pregnancy, Margie's MS worsened slightly. Her main problem was blurred vision. After her second pregnancy, she made sure she had extra help, and there was no exacerbation of MS."
Should I Breastfeed My Baby?
"Historically, neurologists have discouraged women with MS from nursing, feeling that it posed an additional physical burden to a woman already at increased risk for an exacerbation," writes Dr. Kalb. "However nursing is now widely encouraged if you have adequate dexterity, strength, and stamina."
Breast milk not only provides optimal nutrition, but also eliminates the nuisance of bottle preparation. If you do choose to breastfeed, be consistent with all feedings during the first two weeks. This should generate a steady and sufficient milk flow. After this initial period, you can pump and store your milk or use formula so that your partner can handle the nighttime feedings. This is the best way for you to get the sufficient, uninterrupted rest that is so crucial for a new mother with MS. According to current medical information, there is no elevated risk of exacerbation caused by breastfeeding.
It is important to realize, though, that breastfeeding can be tiring. For women whose symptoms are exacerbated by fatigue, this could be a deciding factor. On the other hand, some women feel that breastfeeding is less demanding than bottle-feeding. Talk it over with your partner, your obstetrician, your neurologist, or a lactation consultant at your local hospital.
A Final Word
Make sufficient rest top priority from conception through the postpartum period. Proper nutrition and some form of physical activity are also important. Strive to communicate openly and honestly with your partner. Establish a support network before the baby arrives. Be flexible in terms of parental and domestic responsibilities. Things may not always be done exactly the way you would do them yourself, but they will be done. Let that suffice. Your health and the health of your child are far more important than any domestic chore.
Rather than ignoring the existence of your disease, acknowledge it, in all its unpredictability, and plan accordingly. Many of the things you plan for may never come to pass. Nevertheless, preparedness now will reduce stress and fatigue later, granting you and your partner ample time to delight in your new baby.
Multiple Sclerosis: The Questions You Have - The Answers You Need. Rosalind C. Kalb, Ph.D. ©2000 Demos Medical Publishing, Inc.
Multiple Sclerosis and Having a Baby: Everything You Need to Know about Conception, Pregnancy and Parenthood
Judy Graham ©1999 Inner Traditions Intl., Ltd.
Mother To Be: A Guide to Pregnancy and Birth For Women with Disabilities
Judith Rogers and Molleen Matsumura ©1991 Demos Publications
(Last reviewed 7/2009)