MS pregnancy and parenthood
Open Door - August 2003 pages 5-7
Kate Watkiss, MS Specialist Nurse, Shrewsbury
Multiple sclerosis is a very variable condition of the central nervous system, with the first symptoms usually occurring in young adulthood. At this time many people are embarking on a career, establishing long- term relationships and deciding to start a family. The diagnosis of a lifelong disease with an unpredictable course can have an impact on all of these issues.
The decision to start or add to a family can be difficult enough for couples without MS, but where one partner has the condition, many questions and concerns may come to mind. Unfortunately, there are countless myths and misconceptions surrounding MS, pregnancy and parenthood, making it difficult for people with MS to obtain clear, accurate information on which to base their choices.
In addition, people with MS frequently encounter negative attitudes to their pregnancies from friends and family, and even from some health care professionals. These negative attitudes usually arise from misconceptions, meaning that the person with MS may find themselves in a position of having to educate others.
There is therefore a great need not only for correct advice and information, but also support from health care professionals such as an MS Nurse, neurologist or GP.
Anna’s experience:
“I am pregnant with our second baby and am very happy, but I have been a bit upset about the reaction of some of my friends. I’ve got progressive MS, and find walking difficult. I know it will be a bit of a struggle after the baby is born, but we have planned it all carefully, and I’ve got a lot of help lined up from my family. Some people have looked really shocked when I have told them the news though, and think we are being irresponsible. I know our baby will have a lot of love and attention, and I’m cross and upset that we have to justify ourselves to people”
The link between pregnancy and MS
It is now accepted that MS is an autoimmune disease. The immune system is the body’s defence mechanism against infective organisms e.g. bacteria. However, in MS cells from the immune system recognise the myelin sheath (insulating substance which coats nerve fibres) as a foreign “invader”, and co-ordinate an attack. This leads to inflammation, loss of myelin and scarring within the central nervous system, causing the many possible symptoms of MS.
The immune system is known to be under the influence of the endocrine (hormonal) system, hence MS changes may occur as a result of hormone fluctuations in pregnancy. Although the exact reasons for these changes is unknown, the hormone believed to be responsible for altering the immune system is oestrogen. During pregnancy oestrogen levels steadily rise, and are highest during the last three months. This suppresses activity of the immune system, and many women will have less active MS at this time. However, after the birth, oestrogen levels rapidly drop, and the immune system returns to its usual function. Consequently MS activity may resume.
Pregnancy and MS
One of the most frequently asked questions by couples contemplating starting a family is whether MS can be passed onto the baby. Whilst it is known that there is a genetic tendency towards developing MS, it is not a directly inherited condition, and there are many other factors involved. The children of a person with MS have a slightly higher risk of later developing the disease than the general population. However, this is still considered a low risk, and should not discourage a couple from having children.
In the 1940’s and 50’s, women with MS were often advised by their doctor not to have children. This advice was based on mistaken beliefs that pregnancy would make MS worse, and that women would become more disabled and therefore be unable to raise their children effectively. However, a research study in 1950 was the first to provide evidence that childbirth had no long-term detrimental effects on MS (1). Since then, there have been many extensive studies (2,3) confirming this, and the advice given to women with MS has thankfully changed.
From these research studies it is clear that for many women with relapsing remitting MS, relapse rate is reduced during late pregnancy because of the effect of pregnancy hormones suppressing the immune system. However, in the first 1-2 months after childbirth women are at much higher risk of relapse, when the hormonal system returns to normal. This increased risk lasts between 6 and 9 months, but when taking the pregnancy and post- natal period overall into account, the effect on relapse rate is considered neutral i.e. neither positive nor negative (2). One drawback of many of these studies is that few women with progressive MS were included, and hence the results cannot be generalised to women with this form of MS.
The effects of pregnancy on MS symptoms
Just as the symptoms of MS are very different for each individual, so is the effect of pregnancy on MS symptoms. Although most women feel very well at this time, it is important to realise that certain symptoms can worsen for example; fatigue, bladder problems (due to pressure from the pregnant uterus). It is important for women to discuss their symptoms with their GP, neurologist or MS nurse.
Medications and pregnancy
Medications used to reduce relapse rate in MS (Beta Interferon and Glatiramer Acetate) are not recommended in pregnancy, and should be discontinued (with advice from the neurologist) at least three months before becoming pregnant. Similarly, many of the treatments for MS symptoms should be discontinued before becoming pregnant eg Carbemazepine, Amitriptyline. Steroids (which are used to speed up recovery from relapses) are best avoided, particularly in the first three months. If a pregnant woman experiences a severe relapse then steroids are occasionally used on the advice of the neurologist. For any woman, advice on medication should be sought from their GP, neurologist or MS nurse prior to becoming pregnant.
MS and labour
There is no need for women with MS to be treated any differently during labour, as there is no increased risk from MS for either mother or baby. The caesarean section rate is no higher in women with MS, and should not be advised solely on the grounds of MS, as recovery afterwards takes much longer than from a normal vaginal birth. Depending on the individual’s symptoms, some women with MS may find it difficult to remain mobile in labour, get into certain birthing positions, or may become fatigued. These issues should be discussed with the midwife during pregnancy, when various options such as alternative positions can be explored.
Women with MS can safely use all of the usual forms of labour pain relief (pethidine, entonox, TENS machine, epidural anaesthesia). A recent study has confirmed that there is no increased risk of relapse from epidurals (2).
Tina’s experience:
“When I was pregnant with my second baby, my GP wanted to transfer me to Consultant care at the main hospital 20 miles away, instead of having the baby at the local midwife run unit. He thought it would be safer because of my MS (which is mild), but I really didn’t agree. I decided to fight my corner, and asked my neurologist to write a letter saying that the MS wouldn’t affect the birth. In the end I did have my baby boy on the GP unit, and it all went very well.”
Coping after the birth
Being a new mother is always demanding, and this may be especially true for women with MS who have to cope with extra physical demands. It is wise to plan ahead, and accept all offers of help from friends and family. As explained, there is an increased risk of relapse after childbirth, and if couples are aware of this then they can make contingency plans and seek early treatment. It may be possible to have formal help arranged through social services and/or health visitor if necessary.
Women with MS are often unsure whether to breastfeed, because of anxieties that it may be too tiring. MS cannot be passed on through breast feeding, in fact, the health benefits for mother and baby are great, and once established, breastfeeding is quicker and more convenient than bottle feeding. It has also been suggested that breastfeeding may have a beneficial effect in suppressing MS disease activity, although this has not yet been studied in large enough numbers of women to be conclusive (2).
Women with MS symptoms or disabilities often worry about coping practically with a baby. There are many pieces of equipment available e.g. sleepsuits with Velcro fastenings, speaking thermometers etc. An occupational therapist will be able to offer advice and contacts.
Support, more information and contacts
It is easy for women with MS to feel isolated when pregnant or caring for a small baby. Many women find it helpful to speak to others in a similar situation, and an MS nurse or neurologist may be able to put you in touch with other women locally. Alternatively, there are several organisations offering such support and information (see below).
Conclusion
Having MS need not prevent people from having children, but it is important that prospective parents are armed with the facts in order to carefully weigh up options. Planning ahead, seeking information and advice, and accepting help can minimise or solve some of the problems that can arise.
References
- Tillman A. The effects of pregnancy on multiple sclerosis and its management. Research Publications Association for Research in Nervous and Mental Disease 1950;28:548-582.
- Confavreux C, et al. Rate of pregnancy – related relapse in multiple sclerosis. New England Journal of Medicine 1998;339:285-291.
- Rouillet E, et al. Pregnancy and multiple sclerosis: a longitudinal study of 125 remittent patients. Journal of Neurology, Neurosurgery and Psychiatry 1993;56:1062-1065.
Useful contacts
Disabled Parents Network:
Disabled Parents Network, PO Box 5876, Towcester, NN12 7ZN.
Tel: 0870 241 0450
www.disabledparentsnetwork.org.uk
UK Nationwide network of disabled parents, aiming to build up local and national networks of peer support, increase public awareness, and work for improvement in services. Information is available on tape, computer diskette or large print upon request.
Parents with Disabilities online:
Useful website for information on disabled parenting. Hosts international peer support and email network of disabled parents
DPPi (Disability, Pregnancy & Parenthood international)
National Centre for Disabled Parents, Unit F9, 89/93 Fonthill Road, London N4 3JH
Tel: 0800 018 4730
www.dppi.org.uk
This is a national organisation of disabled parents or who hope to become pregnant. Offers a network with other disabled parents, practical helpline, a newsletter, backing for parents who are having difficulties, training for professionals.
National Childbirth Trust (NCT)
Alexandra House, Oldham Terrace, Acton, London, W3 6NH
Tel: 0870 444 8707
www.nctpregnancyandbabycare.com
Provides information, publications, networks. There are branches throughout the country. Also provide ante and post natal groups.
RADAR
12 City Forum, 250 City Road, London, EC1V 8AF
Tel: 020 7250 3222
www.radar.org.uk
Range of information and publications. Campaigns for better lifestyles for people with disabilities and their families.
Publications
Disabled Parents: Dispelling the myths.
Michelle Wates
Published in association with the NCT.
Radcliffe Medical Press 1997
1857752570
Pregnancy Factsheet
MS Society – 0808 800 8000
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