Pregnancy and parenthood

Pregnancy and parenthood
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We hope you find the information in this factsheet helpful. If you would like to speak
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Pregnancy and parenthood
Date of issue: March 2014
This factsheet will be reviewed within three years
Contents
Introduction
2
1. MS in the family - what are the risks?
2
2. Will MS affect my chances of conceiving?
4
 Should I stop taking medication when trying to conceive?
4
 What happens if I get pregnant whilst I’m taking medication? 5
3. Pregnancy
5
 How will pregnancy affect my symptoms?
6
 How will pregnancy affect relapses?
6
 What impact will pregnancy have on the course of my MS?
7
 Can I take steroids whilst I’m pregnant?
8
4. Labour and delivery
8
 Will MS affect my labour or delivery?
9
 What pain relief is available?
9
5. Planning for the baby
10
6. Life with a new baby
10
 Can I breastfeed?
10
 Can I take steroids when breastfeeding?
11
 When can I start medications after the birth?
11
 Some tips
11
7. Postnatal care
12
8. Meeting other people
13
9. Sources of help and support
14
10. References
16
1
Introduction
MS is most often diagnosed between the ages of 20 and 40, the time when many
people may be thinking of having a family. Deciding whether to start or add to a
family is often a complicated process, and MS raises a host of other questions to
consider. These questions may include: whether MS has any effect on fertility; the
risk of MS to children; the risk from MS medications taken by parents both before
and during pregnancy; and the effect of pregnancy on MS.
Many people look forward to having children. However, emotions may be mixed, and
most have concerns about their current or future ability to take on the practical,
emotional and social responsibilities that children bring. There are no straightforward
answers to these questions. For people with MS, these feelings may be reinforced
by doubts from friends, relatives and even some health professionals.
This factsheet aims to summarise the research into the health aspects of MS
and becoming a parent, and to help you discuss issues and concerns with the
health professionals you see, including your MS nurse, midwife or GP.
1. MS in the family - what are the risks?
Someone with MS might be understandably concerned about the chances of MS
developing in their children. Relatives of someone with MS - eg cousins, aunts,
uncles, siblings - may also be concerned about the risks for their children.
The majority of people who develop MS have no previous family history of the
condition. However, having a relative with MS does increase the chance of being
diagnosed with MS, although the risk remains low.
In the UK, the risk for a member of the general population being diagnosed with MS
in their lifetime is about 1 in 330. Although MS is not considered hereditary, people
with a close relative with the condition are more likely to develop MS. First degree
relatives such as the child of someone with MS are estimated to have a 1 in 40 risk
of developing MS (equivalent to approximately 2%, or two out of 100 children born to
people with MS). For second degree relatives (grandparents, cousins, aunts/uncles,
nephews/nieces) it is around 1 in 100.
2
Although the rate of MS within families indicates that there is a genetic factor, studies
of identical twins show that genes are not the whole story. Identical twins have
exactly the same genetic make-up. If MS were solely dependent on genes, you
would expect that if one twin developed the condition, so would the other. However,
studies have shown that the actual risk of the identical twin of someone with MS
developing the condition themselves is about 1 in 41.
Researchers believe there might be a hundred or more genes that contribute to the
risk of developing MS2. On its own, each gene raises the MS risk negligibly.
However, if someone has enough of these genes, the combined effect will make
them more susceptible to MS.
Genes alone don’t cause the condition. It is believed that other external factors are
involved. When people with a particular genetic make-up are exposed to a trigger,
their body reacts in a way that starts the development of MS, although it may be
years before any symptoms become apparent. There is much debate about what
these triggers (or combinations of triggers) could be but may include an infection of
some sort, a lack of vitamin D or smoking.
Vitamin D
A number of studies have drawn a connection between vitamin D levels in mothers
during pregnancy and the subsequent risk of their children developing MS. More
people with MS are born in spring than autumn, which suggests that mothers getting
less sunshine in pregnancy results in lower vitamin D levels, which in some way
increases the risk of developing MS later in life for children who are genetically
susceptible.
Though there are many studies in progress, the exact role of vitamin D in MS is still
not clearly understood. The Department of Health recommends a daily 400 IU (10
micrograms) vitamin D supplement for pregnant and breastfeeding women3. Some
MS neurologists are now recommending that pregnant women with MS take 40005000 IU (100-125 micrograms) vitamin D per day.
See: Sources of help and support - Vitamin D factsheet
3
2. Will MS affect my chances of conceiving?
There is no evidence that MS has a direct effect on fertility, which means that
anyone with MS has as good a chance of conceiving with their partner as a couple
without MS4.
However, some people do experience sexual difficulties as a result of their MS.
Examples are erectile dysfunction in men, or a reduction in libido for women. These
can impact on the sexual relationship and so on the chances of conceiving a baby. The
MS Trust’s publications, Sexuality and MS: a guide for women and Sex and MS: a
guide for men, explores some of the issues (See: Sources of help and support), and
whilst it can be difficult to discuss these matters, they can be addressed and managed.
All health professionals should understand that MS frequently has an impact on sexual
activity.Your MS nurse or GP, is a good point of contact and can work with you to find
strategies to help. They can also refer you to a specialist if necessary.
However, problems conceiving can occur, just as in the general population, and one in
six couples may have difficulty5. Treatments for infertility may increase disease
activity6. In depth discussion with your health care team and reproductive medicine
team to explore all the pros and cons of a treatment is important.
 Should I stop taking medication when trying to conceive?
No disease modifying drug is proven to be safe during pregnancy7. It is generally
recommended that any woman who is taking one of the injectable disease modifying
drug treatments for MS (eg Avonex, Betaferon, Rebif, Extavia, Copaxone, or
Tysabri) or the oral treatment Gilenya should stop taking the drugs three months
before they start trying for a baby. Women taking the oral disease modifying drug
Aubagio (teriflunomide) require a two year period without taking the medication to
ensure that it has all been eliminated from the body8. In some cases, a neurologist
may suggest that a woman remains on disease modifying drug therapy throughout
pregnancy, but this is very much a decision that should be taken in partnership
having fully explored the risks and benefits.
There is little information about pregnancy outcomes if fathers are receiving
treatment, however as Aubagio is detected in semen, this therapy should be
discontinued before conception9. Men receiving any of the disease modifying drugs
and trying for a baby should discuss this with their MS nurse or neurologist. (See
4
Sources of help and support: Disease modifying drug therapy: what you need
to know). Other drugs used to treat MS symptoms, such as pain or spasticity are not
recommended during pregnancy. Some drugs need to be tapered off rather than
stopped suddenly, sometimes alternative medications can be explored to manage
symptoms throughout pregnancy. Discussion with your MS team about the pros and
cons of any symptom management during this time is really important10.
 What happens if I get pregnant whilst I’m taking medication?
If you become pregnant whilst taking medication it is important to contact your MS
nurse or neurologist as soon as possible. You can then consider how best to stop
medication as some drugs need to be reduced gradually to prevent unpleasant
withdrawal symptoms for both mother and baby.
You may be invited to enrol in a pregnancy exposure register. This is a study that
collects health information from women who take medicines when they are pregnant
or breastfeeding. Information is also collected on the newborn baby. This information
is then compared with women who have not taken medicine during pregnancy.
Because medicines can’t be tested on pregnant women, there is little
information about how they could affect a woman or her baby. Pregnancy
registries are the best way to capture data, so that in the future, women and
their MS teams can balance the pros and cons of treatment during pregnancy.
3. Pregnancy
The majority of all pregnancies are normal and low-risk, and are managed by a
combination of GP and community midwife. Having MS does not significantly increase
the risk of having problems during pregnancy. However some maternity services may
offer specialist clinics, for example for women with neurological conditions, so it is
worth asking your MS nurse or midwife if this is available where you are.
Researchers analysed a large US database containing information about
pregnancies and deliveries in women with MS, epilepsy or diabetes mellitus and the
general healthy population. They studied: length of hospital stay; high blood
pressure; premature rupture of the sac surrounding the foetus; low birth weight; and
caesarean section delivery. Aside from a slightly higher risk of low birth weight
babies and caesarean delivery, MS was not associated with an elevated risk for any
of the other pregnancy complications11.
5
 How will pregnancy affect my symptoms?
Most women with MS feel well during their pregnancies, and experience no new
problems. However, some symptoms that occur in MS also occur in pregnancy, and
it may be difficult to distinguish the cause. Fatigue is often a problem in early
pregnancy and MS fatigue may therefore appear to be exacerbated. Heat sensitivity
may also increase during pregnancy, which may make fatigue worse. Women often
find that they don’t sleep as well during pregnancy, further contributing to increased
fatigue. Bladder symptoms such as frequency and urgency can increase because of
pressure on the bladder from the uterus. It is also important to be vigilant about
urinary tract infections. In late pregnancy, mobility problems can worsen due to the
increasing weight of the baby and changes in posture.
Women’s experience of pregnancy is highly variable and any new or worsening
symptoms should be discussed with your midwife, GP or MS nurse.
Some women are concerned about the effect of pregnancy on symptoms postnatally,
particularly bladder symptoms. Research showed that there was no difference in
bladder problems experienced between women with MS who had had children and
women with MS who had never given birth12.
 How will pregnancy affect relapses?
A very common question among women who experience relapses is whether they
are likely to have a relapse during pregnancy. Overall, relapse rate has been found
to be similar during the pregnancy twelve months (nine months of pregnancy and
three months following the birth) as a non-pregnancy year. There is usually a
reduction in relapse rate during pregnancy, particularly in the last three months but
an increase in relapse rate in the three months following the birth.
One study tracked 227 women for a year before and through pregnancy and for up
to two years after the baby was born. It showed that relapse rates during the early
months of pregnancy are unlikely to be very different from what it was previously.
However, relapses during the last trimester (months seven to nine) fell markedly. In
the first three months following birth, the relapse rate increased to almost one and a
half times the average rate of relapses experienced in the last pre-pregnancy year.
However, 72% of women on the study did not experience a relapse in that period.
6
The relapse rate remained at a slightly higher level than in the pre-pregnancy period
for up to nine months following the birth, but then tapered off to previous levels13.
It is thought that relapse rate is reduced during late pregnancy because of the effect
of pregnancy hormones, notably oestrogen, which suppress the immune system to
ensure that the body will carry a growing baby without rejecting it. Relapse rate after
birth may increase because of hormonal disturbances, but there is no consensus
about this.
Overall, taking pregnancy and the year following birth as a whole, researchers
consider that the number of relapses will remain around the same as it would be if
there had not been a pregnancy13.
The severity of a relapse that a woman may experience during pregnancy is hard to
predict, but as far as is known relapses do not affect the baby. Do let your MS nurse
or consultant know if you do have a relapse whether it is severe or not.
 What impact will pregnancy have on the course of my MS?
There has been limited research into the long-term effects of childbirth on the course
of MS. However, pregnancy and childbirth have been associated with less long-term
disability. In one Belgian study researchers investigated the progression of disability
in 330 women with MS over a period of 18 years14. Participants were divided into
four groups: women who had given birth before the onset of MS; women who had
given birth after the onset of MS; women who had given birth both before and after
the onset of MS; and women who had never had children. The time taken from onset
of MS to reach point 6 on the Expanded Disability Status Scale (EDSS - a clinical
scale used to measure an individual's level of disability) was used to define MS
progression. Point 6 on EDSS equates with the inability to walk without the support
of a walking aid.
Analysis of the data revealed that women who had given birth at any point in time either before or after the onset of MS - were 34% less likely to have reached EDSS 6
than childless women with MS.
The study authors acknowledge the limitations of their findings, such as lack of
consideration for timing and duration of disease modifying drug therapy and the
7
imprecision of the time of MS onset. Further studies are needed before any firm
conclusions can be drawn about the effects of childbirth on MS progression.
No impact on the long-term course of MS or likelihood of secondary progressive MS
has been found15,16. As yet no studies have explored pregnancy in primary
progressive MS.
 Can I take steroids whilst I’m pregnant?
Some people ask whether they are able to receive steroids during pregnancy.
Steroids carry some risks and so it is thought that these should be avoided,
particularly during the first three months of pregnancy when the foetus is developing
very rapidly. However, if a severe relapse occurs, it may be decided - in consultation
with your neurologist - that the benefits outweigh any potential risks of treatment.
4. Labour and delivery
Antenatal classes are provided by the NHS for first-time mothers and many women
may also choose to join groups such as the National Childbirth Trust. It might also be
reassuring to speak to other people with MS who are pregnant or have given birth in
the past. Your MS nurse may know of suitable groups in the local area.
Many pregnant women choose to make a ‘birth plan’ outlining their wishes for the
procedures to be followed at the birth of their child and where they wish the birth to
take place. If you have MS this can be even more important as not all the health
professionals that might see you during labour will be familiar with MS.
You can also make a plan for pain relief, it can be useful to document that epidural
pain relief would be acceptable as some health professionals on the day may not
have experience of MS and can be reluctant to give this. Having a meeting with your
whole MS team including midwife, MS nurse and anaesthetist can be really valuable.
You can be proactive and ask for what you want.
8
 Will MS affect my labour or delivery?
MS does not usually affect labour or delivery. There is little research about whether
different types of delivery are better suited for women with MS.
For most women, and for most women with MS, a normal delivery is suitable.
However, any concerns about positions, or managing fatigue, during labour may be
discussed with a midwife in advance. If you experience spasticity or spasms it is
really important to discuss this with your midwife and plan for the birth, exploring
possible birth positions that will be helpful, and have this documented in your birth
plan. Some women find the option of water birth helpful where heat sensitivity is part
of their MS. If fatigue is a problem it may be possible to arrange an early epidural to
allow you to rest in the early stages of labour - this could form part of your birth plan.
At delivery, safety of mother and child is paramount and there may be medical
reasons for an assisted delivery - eg forceps or Ventouse (suction cup) - or delivery
by Caesarean section. Whilst in some cases women may choose to deliver by
Caesarean section, recovery from this procedure frequently takes longer than from a
normal delivery, and involves restrictions on activities such as driving a car and
heavy lifting.
Choices about labour should be discussed during antenatal care. Midwives are
usually very supportive of a woman’s personal choice for delivery.
 What pain relief is available?
Generally, women with MS can accept most types of pain relief during labour, such
as pethidine, entonox (gas and air) and epidural anaesthesia. No adverse effects on
delivery or course of MS have been associated with use of epidural anaesthesia17.
The NICE Guideline recommends that women should have the pain relief that seems
most appropriate and acceptable to them, without fear of it affecting their MS18.
TENS machines are available for pain relief in the early stages of labour. Anecdotal
evidence suggests that TENS machines can trigger lower limb spasm in some
women with MS during labour19. It may be worth discussing this with health
professionals in advance.
9
5. Planning for the baby
As for anyone with a new baby, it can be valuable to make the most of offers of help.
If help is not available from friends and relatives, it may be possible to have help
arranged through social services or your health visitor.
If at all possible, try discussing in advance the type of help that might be needed. For
example, is help needed with household tasks? Or perhaps with night feeding? Or
just taking the baby out to allow some additional sleep in the day?
Help may be needed at different times. Typically, offers of help are received
immediately following the birth, but research has shown that the increased risk of
relapse remains until around six to nine months after the baby is born. One research
study has found that having help available for the whole of the first year reduced the
number and impact of symptoms that a new mother with MS experiences and
increases her ability to function normally20. While this may not be feasible for
everyone, developing a network of potential helpers who may be available at short
notice may be useful.
6. Life with a new baby
 Can I breastfeed?
How to feed a newborn baby is, and should be, a choice. Many women with MS
have understandable concerns about breastfeeding. Fatigue can be a real issue for
breastfeeding mothers, since only the mother can do it. Bottle feeding can be a
shared activity, with other people giving some of the feeds. If you are not able to
breastfeed then you should not feel that you have in some way failed your child.
It is important to discuss all these issues with the MS nurse and/or midwife before
the baby is born, so that they are able to provide appropriate support and advice. A
number of organisations provide support to breastfeeding mothers, details can be
found in Sources of help and support.
MS cannot be passed through breast milk and research has shown that
breastfeeding is preferable to promote the health of the newborn baby. Only one
study has looked at the children of women with MS, and showed that their breastfed
babies, when followed for a year, had been less prone to health problems such as
ear infections than babies that had been bottle fed21.
10
Studies on the course of MS suggest either no effect or a possible decrease in the
relapse rate associated with breastfeeding22.
 Can I take steroids when breastfeeding?
Steroids have been shown to cross into breast milk and there is very little research
that has explored the high doses used in treating MS relapse, so currently women
are advised not to breastfeed whilst taking this medication. However women can
express as much milk as possible before starting the course of treatment and store
this for use during the treatment - usually five days for oral methylprednisolone or
three days if taken intravenously. Milk may be expressed and discarded during the
actual treatment period. Breastfeeding can then be recommenced between one and
two days after the end of treatment - your MS nurse and neurologist will determine
the exact timings with you.
 When can I start medications after the birth?
Disease modifying treatments can be present in breast milk so these are not usually
started during breastfeeding. The decision whether to resume disease modifying
treatment immediately after birth needs to be considered against the potential
advantages of breastfeeding.
 Some tips
Fatigue management with a new baby
Look after your own nutrition:

Prepare some meals pre-birth and freeze individual portions so you are not
worrying about cooking post birth

Have handy healthy snacks available as breastfeeding can increase appetite

Online grocery shopping may be an option

Don’t forget to accept help around you from family and friends, especially in the
first few weeks
Conserve energy
If you live in a two storey property have a supply of a baby change mat, nappies,
wipes and spare babygrows on each floor.
Sleep or rest when baby does in the first few weeks if this is possible, again accept
help around you for things like general house chores.
11
Breastfeeding
Hold your baby in a position that won’t make your arms and back ache. Have
cushions or pillows nearby to support you and your baby.
Access support from the National Childbirth Trust, La Leche League and the
breastfeeding network, (See: Sources of health and support) they can put you in
touch with skilled supporters. It may be worth getting in touch prior to the birth to
discuss options.
Because of the increased risk of relapse after birth it may be worth considering
expressing and storing milk. Stored milk may also be used by other members of the
family to feed baby, so allowing mum extra rest time.
Electric breast pumps can conserve energy compared with using a manual breast
pump. Electric breast pumps express your milk faster. Ease and efficiency are the
two main reasons why mums choose an electric breast pump.
Managing specific symptoms
Sensory disturbance in hands - using temperature monitors in the baby bath will be
useful.
Weakness in upper limbs - consider a baby sling to hold baby.
7. Postnatal care
Once the baby is born, the community midwife’s duty of care can last for up to 21
days, but is normally less. Care is then transferred to the health visitor, who has a
duty to monitor the general health and wellbeing of the whole family, not just the
baby. If at all possible, it may be worth trying to meet the health visitor before the
baby is born. The GP is also responsible for monitoring mother and baby for around
six weeks after the birth.
12
8. Meeting other people
It is easy for anyone to feel isolated when caring for a very small baby. Many people
find it helpful to speak to other parents in a similar situation.
The MS Trust has hosted a blog by Hellie, a woman with MS who gave birth to her
second child. It charts her experiences through pregnancy and in the months after
birth. To access the blog visit www.mstrust.org.uk/interactive/babymsme. Mums and
MS is an online resource and community developed and hosted by the University of
Coventry https://mumsandms.coventry.ac.uk/
There are an increasing number of Facebook groups including muMS UK, an online
group who discuss all aspects of pregnancy and parenting, and for those who are
thinking of starting a family. The MS Trust Facebook group can also be a place to
find support.
Health visitors are also good sources of information about local support groups for
parents and babies. Your MS nurse may be able to help identify other new parents
with MS. There are also several organisations that offer support and information for
parents, listed below.
13
9. Sources of help and support
Mums and MS. A website is intended for women living with multiple sclerosis who
are considering having a baby, are currently pregnant, recently had a baby or just
would like to find out more information about their condition and various aspects of
childbearing
Website: https://mumsandms.coventry.ac.uk/
Useful organisations
GENERAL

HomeStart
Home-Start UK, 2 Salisbury Road, Leicester LE1 7QR
Website: www.home-start.org.uk
The UK’s leading family support charity, offers support in the home from parents
supporting other parents. Based on a local network of branches and regions.

National Childbirth Trust
Alexandra House, Oldham Terrace, Acton, London W3 6NH
Website: www.nct.org.uk
A membership organisation that provides information, publications, networks,
ante and postnatal courses and a breastfeeding support service.

Cry-sis
BM Cry-sis, London WC1N 3XX
Website: www.cry-sis.org.uk
A charity that offers support for families with excessively crying, sleepless and
demanding babies.
BREASTFEEDING SUPPORT

National Childbirth Trust as above.

La Leche League Great Britain
Website: www.laleche.org.uk
Aims to help mothers breastfeed through mother-to-mother support,
encouragement, information and education.

Breast feeding network
Website: www.breastfeedingnetwork.org.uk
Aims to be an independent source of support and information for breastfeeding
women and those involved in their care. This has information on taking
prescription drugs whilst breastfeeding.
14
PARENTS’ ORGANISATIONS

DPPi: Disability, Pregnancy and Parenthood international
Disability, Pregnancy & Parenthood international, National Centre for Disabled
Parents, Unit F9, 89-93 Fonthill Road,London, N4 3JH
Website: www.dppi.org.uk
Disability, Pregnancy & Parenthood international (DPPi) is a small UK based
registered charity, controlled by disabled parents, which promotes better
awareness and support for disabled people considering, during and after
pregnancy and as parents.

Disabled Parents Network
Website: 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.

Parents with disabilities online
Website: www.disabledparents.net
Useful website for information on disabled parenting. Hosts international peer
support and email network of disabled parents.
Resources from the MS Trust

Baby, MS and me - blog www.mstrust.org.uk/interactive/babymsme/

Disease modifying drug therapy: what you need to know

Living with fatigue

Managing your bladder: a guide for people with MS

Sexuality and MS: a guide for women

Sex and MS: a guide for men

Vitamin D factsheet
15
10.
References
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16. Koch M, et al. Parity and secondary progression in multiple sclerosis. Journal of Neurology
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17. Pasto L, et al. Epidural analgesia and caesarean delivery in multiple sclerosis. BMC Neurology
2012; 12: 165.
18. National Institute for Health and Clinical Excellence. Multiple sclerosis: management of multiple
sclerosis in primary and secondary care. Clinical Guideline 8. NICE: London; 2003.
19. UKMSSNA. The United Kingdom MS Clinical Management Manual. UK MS Specialist Nurse
Association: London; 2003.
20. Gulick EE. Postpartum functioning in mothers with multiple sclerosis. Western Journal of Nursing
Research 2007; 29(5): 589-602.
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July 2012. [Accessed 27th Jan 2014].
Please contact the MS Trust Information Team if you would like any further
information about reference sources used in the production of this publication.
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