Pregnancy and parenthood

Transcription

1 Pregnancy and parenthood

2 We hope you find the information in this factsheet helpful. If you would like to speak with someone about any aspect of MS, contact the MS Trust information team and they will help find answers to your questions. This factsheet has been provided free by the Multiple Sclerosis Trust, a small UK charity which works to improve the lives of people affected by MS. We rely on donations, fundraising and gifts in wills to be able to fund our services and are extremely grateful for every donation received, no matter what size. MS Trust information service Helping you find the information you need The MS Trust offers a wide range of publications, including a newsletter Open Door, which provides an ongoing update on research and developments in MS management. In addition it contains articles from people with MS and health professionals. For a full list of MS Trust publications, to sign up for Open Door and much more visit our website at phone (from a mobile) (Lines are open Monday - Friday 9am-5pm) write infoteam@mstrust.org.uk MS Trust Spirella Building Letchworth Garden City SG6 4ET Reg charity no

3 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 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 Postnatal care Meeting other people Sources of help and support References 16 1

4 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

5 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 4 1. Researchers believe there might be a hundred or more genes that contribute to the risk of developing MS 2. 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 women 3. Some MS neurologists are now recommending that pregnant women with MS take IU ( micrograms) vitamin D per day. See: Sources of help and support - Vitamin D factsheet 3

6 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 MS 4. 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 difficulty 5. Treatments for infertility may increase disease activity 6. 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 pregnancy 7. 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 body 8. 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 conception 9. Men receiving any of the disease modifying drugs and trying for a baby should discuss this with their MS nurse or neurologist. (See 4

7 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 important 10. 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 complications 11. 5

8 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 birth 12. 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

9 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 levels 13. 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 pregnancy 13. 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 years 14. 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

10 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 found 15,16. 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

11 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 anaesthesia 17. 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 MS 18. 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 labour 19. It may be worth discussing this with health professionals in advance. 9

12 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 normally 20. 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 fed

13 Studies on the course of MS suggest either no effect or a possible decrease in the relapse rate associated with breastfeeding 22. 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

14 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

15 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 Mums and MS is an online resource and community developed and hosted by the University of Coventry 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

16 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: Useful organisations GENERAL HomeStart Home-Start UK, 2 Salisbury Road, Leicester LE1 7QR Website: 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: 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: 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: Aims to help mothers breastfeed through mother-to-mother support, encouragement, information and education. Breast feeding network Website: 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

17 PARENTS ORGANISATIONS DPPi: Disability, Pregnancy and Parenthood international Disability, Pregnancy & Parenthood international, National Centre for Disabled Parents, Unit F9, Fonthill Road,London, N4 3JH Website: 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: 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: Useful website for information on disabled parenting. Hosts international peer support and network of disabled parents. Resources from the MS Trust Baby, MS and me - blog 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

18 10. References 1. Sadovnick AD. Genetic epidemiology of multiple sclerosis: a survey. Annals of Neurology 1994; 36(S2): S194-S International multiple sclerosis genetics consortium (IMSGC), et al. Analysis of immune-related loci identifies 48 new susceptibility variants for multiple sclerosis. Nature Genetics. 2013;45: Department of Health.Vitamin D - advice on supplements for at risk groups. Department of Health: London; Milller DH, et al. Pregnancy, sex and hormonal factors in multiple sclerosis. Multiple Sclerosis 2014; Jan 20 [Epub ahead of print] 5. NHS Choices. Infertility [Accessed 24th March 2014] 6. Hellwig K, et al. Artificial reproduction techniques in multiple sclerosis. Clinical Immunology. 2013; 149: Cree AC. Update on reproductive safety of current and emerging disease modifying therapies for multiple sclerosis. Multiple Sclerosis 2013; 19(7): National Institute for Health and Care Excellence. Multiple sclerosis (relapsing) - teriflunomide. Technology Appraisal 303. NICE: London; Lu E, et al. Disease modifying drugs for multiple sclerosis in pregnancy: a systematic review. Neurology 2012; 79: Watkiss K, Ward N. Multiple sclerosis: pregnancy and parenthood. Nursing Standard 2002; 17(3): Kelly VM, et al. Obstetric outcomes in women with multiple sclerosis and epilepsy. Neurology 2009; 73(22): Durufle A, et al. Effects of pregnancy and childbirth on the incidence of urinary disorders in multiple sclerosis. Clinical Experts in Obstetrics and Gynaecology 2006; 33(4): Confavreux C, et al. Rate of pregnancy related relapses in multiple sclerosis. New England Journal of Medicine 1998; 339: D'hooghe MB, et al. Long-term effects of childbirth in MS. Journal of Neurology Neurosurgery and Psychiatry 2010; 81(1): Ramgopalan S, et al. Term pregnancies and the clinical characteristics of multiple sclerosis: a population based study. Journal of Neurology Neurosurgery and Psychiatry 2012; 83: Koch M, et al. Parity and secondary progression in multiple sclerosis. Journal of Neurology Neurosurgery and Psychiatry. 2009; 80: Pasto L, et al. Epidural analgesia and caesarean delivery in multiple sclerosis. BMC Neurology 2012; 12: National Institute for Health and Clinical Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. Clinical Guideline 8. NICE: London; UKMSSNA. The United Kingdom MS Clinical Management Manual. UK MS Specialist Nurse Association: London; Gulick EE. Postpartum functioning in mothers with multiple sclerosis. Western Journal of Nursing Research 2007; 29(5): Gulick EE, et al. Infant health of mothers with multiple sclerosis. Western Journal of Nursing Research 2004; 26(6): Hellwig K, et al. Multiple sclerosis and pregnancy: experience from a nationwide database in Germany. Therapeutic Advances in Neurological Disorders 2012; 5(5): UKTIS; Use of corticosteroids in pregnancy. July [Accessed 27 th 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. 16