Having MS and starting a family

Written by Dr Gary Fulcher, Senior Clinical Psychologist, MS Australia

A shorter version of this article appeared in the January 2013 edition of MS in focus magazine on young people with MS.

Having a child is a lifelong commitment and there are many factors that couples need to consider. In choosing to have a family, couples want to feel confident that they can support their child — physically, emotionally and financially. Thinking ahead is an important part of deciding to become parents, particularly for people living with MS. This article provides information about some of the issues that most concern people with MS about starting a family.

Ability to look after children in the future
Because MS is so unpredictable, there is no straightforward answer to whether one will have the ability to look after a child in the future. Generally, many people with MS experience some level of disability within 10 years of disease onset; however, most maintain physical independence 25 years and more after diagnosis. Neurologists and other health professionals may be able to offer advice on patients’ individual circumstances.

Financial concerns
Certain aspects of the disease may affect a mother's ability to work. Their partner may also need to take time off work to care for her and/or their child. It is necessary to check what supports exist locally to help couples maintain employment or gain financial assistance. Planning ahead is vital to ensure financial security in the long-term.

MS can bring changes that may strain even the strongest relationships, including experiencing the trauma and emotional distress of a diagnosis of MS. MS-related symptoms and financial difficulties can add to the pressure. As all couples planning a family should be emotionally ready to take this step, it is important to seek help if these issues are or become a problem.

Role changes within the family
Over the course of MS, a shift in roles may be necessary and this can occur unexpectedly. The person with MS can go from being the main contributor in the household to needing care. Partners need to understand the changes MS might bring and that there may be times when they need to take on the role of caregiver and parent. This can be stressful, so it is important that couples are comfortable with seeking outside support from family, friends, or community resources; and know where to go to find this support. In some circumstances, a child might also need to do some of the caring for their parent in the future.

Mood and emotions
Understandably, MS can lead to depression and anxiety related to the effects of MS on life or to changes in the brain or hormone levels. For some women, worries about having or coping with a child can make anxiety or depression worse, while for others the worry of not having a family causes distress. For those with children, any problems the child has can create stress and make managing MS harder. Each person is different, so it is important for couples to consider their feelings about how they will cope with their decision to have a child or not.

If individuals find it hard to cope with their mood or emotions and feel down or depressed, they should seek prompt support and referral to appropriate health professionals such as psychologists.

Genetic considerations
A common fear among people with MS is that they will pass MS on to their children. While this is possible, the genetic component of MS is small and it is a rare disease with a low risk. There are currently no prenatal tests to identify MS but it is helpful to know the relative risks depending on each couple’s own situation and the table below shows these risks clearly.

The likelihood of a child developing MS is indicated in the following statistics. Out of 1,000 people, on average:

  • 1 person will develop MS in their lifetime
  • 30-50 people will develop MS if one parent has MS
  • 120 people if both parents have MS
  • 880 people will NOT get MS even if both their parents have MS

The risk is higher for females than males because MS affects more women than men. The risk is also higher if the mother is the parent with MS.

Pregnancy and MS
For women with MS, pregnancy doesn’t affect the long-term course of the disease. Many women with MS have fewer attacks during pregnancy, especially during the second and third trimester. This is thought to be caused by pregnancy hormones dampening the activity of the immune system.

However, relapses can still occur and can be a challenge. How relapses are managed will depend on the severity of the relapse, and more severe relapses may need to be treated with corticosteroids for up to one week. It is important that you seek medical advice if a relapse does occur while you are pregnant.

Mothers are more likely to experience a relapse in the three months after the birth. However, research shows that pregnancy and delivery, epidurals or after-birth relapses do not have any impact on a woman’s level of ability in the long-term.

An interesting recent finding is that having children reduces the risk of developing MS in the first place, with women with at least one child having about half the risk of developing early MS symptoms, while women with three children having a 75% reduction in risk.

Breastfeeding does not increase relapse rates or lead to a loss of ability. In fact, exclusive breastfeeding may even have a protective effect for the mother against MS activity. However, medications that may be harmful to the baby might be present in breast milk so care is needed in making a decision about when to re-start taking disease modifying medication.

Mothers with more active MS often choose not to breastfeed and return to their usual medications immediately. Bottle feeding also allows both parents to share night feeds, which may help when fatigue is an issue. The preference to breast or bottle feed is a personal one and the arguments for and against breastfeeding need to be considered carefully. Neurologists and other healthcare providers can provide individually tailored advice.

It is worth noting, however, that breastfeeding can bestow a protective effect on children against developing MS (as well as other autoimmune diseases) providing the period of breastfeeding exceeds four months.

Common questions couples have about pregnancy in MS:

Will MS affect me or my baby during pregnancy?

Having MS during pregnancy does not increase the chance of having a miscarriage or still-born child or increase the number of infant deaths or foetal abnormalities. Therefore, MS itself does not pose a risk to the mother or child.

As mothers grow to carry more weight, unsteadiness in walking may get worse. A woman’s centre of gravity also changes, which can affect her balance. Some mothers-to-be may need to consider grab bars, canes or, if needed, wheelchairs, particularly in the third trimester.

Urinary tract infections are common during the third trimester and must be treated to prevent any risk to both mother and baby. If bowel problems exist before pregnancy they may become aggravated. It is also likely that women with MS will experience more fatigue throughout pregnancy.

Is labour and delivery harder because I have MS?
Some women have had trouble detecting contractions due to reduced nerve function. The risk of fatigue is also likely to be higher for women with MS and sometimes this can increase the chance of an assisted delivery (e.g. the use of forceps or vacuum-assisted vaginal delivery during birth). However, overall, delivery is no more complicated for women with MS than it is for women without MS.

General anaesthetics are safe and may be an option for women requiring a Caesarean. Epidurals are also safe and will not increase the chances of a relapse or impact on your level of ability after the baby is born. There has not been much research on spinal anaesthetics. In the research that is available, there does not appear to be any connection between spinal anaesthetic and increased risk of relapse.

What will the postnatal period be like for me?
Although pregnancy is usually a time where relapses are fewer, there is a 20 to 40 per cent chance that a new mother with MS will experience a relapse in the first three months after the birth. Exclusive breastfeeding may reduce the chance of an after-birth relapse so this may be an option to discuss and plan with one’s neurologist to suit each individual situation.
Mothers may also become very tired after the birth with the extra demand of breastfeeding, being woken through the night and the possibility of a relapse. Planning ahead for this time is advised.

Does MS affect fertility?
While symptoms of MS can result in sexual dysfunction such as difficulty having an orgasm, vaginal dryness or reduced lubrication, MS does not affect fertility. It is important, however, to be well-informed about any effects of medications for MS on fertility.

Along with the rest of the female population, women with MS may find it difficult to fall pregnant for a variety of reasons and resort to assisted processes such as IVF to have children. Recent research in Europe has demonstrated that an increase in relapse rates occurred in a small group of women while they were undergoing hormone stimulations for pregnancy. It is wise to seek advice from neurologists and advising gynaecologists when considering this approach.

What about my medications during pregnancy?
Medications for MS work to reduce the length and frequency of relapses. The difficulty is that some medications have been shown to be harmful to the developing baby or, more often than not, the effects on the unborn child are simply unknown.

Given that this is the case, it is worth discussing the risks involved in taking medications with neurologists or an MS nurse before trying to conceive. They may recommend stopping medication one to three months before trying to conceive and not using medication during pregnancy or while breastfeeding. Some medications for MS have been detected in breast milk and, therefore, speaking to the neurologist about breastfeeding before re-commencing medications for MS is recommended.

Interferon beta-1a or 1b medications and glatiramer acetate have been prescribed for over 15 years so neurologists have some knowledge about the side effects of these medications. However, there isn’t enough information about the full effects of these medications on the baby. Therefore, continued use in pregnancy is not recommended.

Natalizumab is a drug administered to people with relapsing forms of MS via monthly intravenous infusions to delay the physical loss of ability that MS can bring. There are no studies involving this drug and pregnant women.

Cladribine and fingolimod have not been tested on pregnant women.

Steroid drugs such as prednisone and methylprednisolone are often used to manage severe relapses by easing inflammation at the affected site, and to reduce the duration of relapses. These drugs have been taken by a large number of pregnant women and women of average child-bearing age without causing direct or indirect harmful effects on the foetus. However, these drugs should be avoided during pregnancy and breastfeeding unless your neurologist specifically advises otherwise.

Are there problems for mothers with MS in bonding with their baby?
The physical symptoms of MS may affect a mother’s ability to move around easily and have physical contact with her child, but they do not have any impact on the bond between a mother and her child.

Periods of relapse, fatigue, sensory and motor problems may mean that a mother will need to alter the way she physically cares for her child. But overall it is the love and strong sense of self worth that mothers give their child that are the basis for them being a good mother.