In the past women with certain medical or disabling conditions would have been advised by their doctors not to undertake pregnancy for fear of making their condition worse, having a damaged child because of the condition or the medication, or not being able to cope with caring for a baby or growing child. With increasing knowledge about conditions, improved care and medication, and the greater freedom individuals have to make informed choices, women are deciding to have children. However, medical understanding and evidence to offer women to help them to make choices is not always available.
This chapter contains details about specific disabling conditions that women undertaking pregnancy and childbirth may have. The list is not exhaustive and by necessity the section on each condition is just an overview, therefore you are strongly advised to read further. Table 8.1 displays key issues for easy reference.
| aNTD = neural tube defect e.g. spina bifida. | ||||
| bDVT = deep vein thrombosis, commonly in a vein in a calf muscle but can be in pelvic veins. | ||||
| cPIH = pregnancy induced hypertension. | ||||
| dUTI = urinary tract infection. | ||||
| eIUGR = intrauterine growth restriction. | ||||
| fCVP = central venous pressure line. | ||||
| Condition | Cause | Possible impairments/issues | Medication/management | Significance in pregnancy & childbirth |
|---|---|---|---|---|
| Cerebral palsy | Perinatal compromise/lack of oxygen | Motor function/paralysis Limb spasticity Swollen ankles Fatigue Speech & sensory loss Epilepsy Urinary incontinence | Skeletal muscle relaxants Anti-epileptics e.g. carbamazepine, phenytoin, valporate — combined treatment sometimes used | Increased risk of NTDa with anti-epileptics — single therapy less so — consider regime preconception & advise folic acid 5 mg daily Tiredness & muscle spasm may worsen in pregnancy & triggered by labour In labour attention to pressure areas, massage may relieve muscle spasm, poor leg abduction may mean adaptable positions for examinations & birth Mother may need vitamin K prior to labour with some anti-epileptics (as well as neonate) Breast-feeding possible depending on type of medication e.g. avoid with phenytoin & if fatigue is managed Combined hormonal contraception may not be suitable if poor mobility as risk of DVTb |
| Fibromyalgia | Unclear | Muscle pain Joint pain & stiffness Tender points on the body Fatigue Gastro-intestinal disturbance Depression/anxiety common | Aerobic exercise Sleep treatment Anti-depressants | Preconception advice regarding medication & folic acid Tender points on body may increase Uterine cramps similar to pre-term labour Alternative positions, mobility, hydrotherapy during labour will ease muscle/joint pains Breast-feeding if fatigue managed |
| Multiple sclerosis (MS) | Autoimmune condition Loss of myelin sheath over nerves | Weak muscles, spasm, pain Paraesthesia Imbalance Fatigue Loss of sensation Impaired bladder & bowel function Vision & speech affected Cognitive changes Depression Symptoms worsen in the heat/fever | Immune suppressants e.g. cyclophosphamide, methotrexate, azathioprine Steroids e.g. prednisolone Muscle relaxants | Preconception — risk of fetal abnormality with some immune suppressants (see text) Condition may improve during pregnancy or fatigue, pain & paraesthesia may worsen PIHc, pre-eclampsia, diabetes & infection risk when on steroids — loading dose needed in labour Avoid UTId& anaemia Labour — spasms may be triggered by pain, examinations & full bladder; epidural may prevent spasms; onset of labour may not be perceived & precipitate birth (teach mother how to palpate uterine contractions); second stage expulsive urge may be absent; abduction of legs may be difficult — flexible examination & birth positions Postnatally — fatigue/weakness may inhibit self-care, infant care & breast-feeding; drugs do not appear to be contraindicated in breast-feeding although high doses may be; MS relapses in some cases; combined hormonal contraception may be unsuitable if poor mobility (risk of DVTb) |
| Myalgic encephalo-myelitis (ME) | Unclear — possible post-viral syndrome | Overwhelming fatigue for over 6 months Muscular pain Paraesthesia Headache/migraine/vertigo Sensitivity to light, noise, odours Sleep disorder Altered cognitive ability Altered temperature control Food allergy Depression | Exercise programme Complimentary therapies Cognitive behavioural therapy Diet modification with allergies Serotonin re-uptake inhibitors e.g. fluoxetine & mild anti-depressants | Preconception advice — drugs contraindicated (sudden withdrawal must be avoided); ensure optimum general health/well-being; forward planning Pregnancy may trigger a relapse/worsening of symptoms Chronic fatigue may reduce ability for self-care, coping with labour & infant care — forward planning; adequate rest & support Risk of DVTb if mobility reduced Reduced ability to understand/remember information Labour — respond to need for light, noise & temperature controls if relevant; sensitivity to fatigue/avoid undue stress Postnatally — drugs contraindicated; forward planning to avoid exacerbating fatigue |
| Rheumatoid arthritis (RA) | Autoimmune condition | Painful, swollen joints of hands & feet, sometimes neck Damaged/deformed joints may affect mobility Fatigue | Anti-inflammatory drugs e.g. non-steroidal i.e. paracetamol, ibuprofen, steroids i.e. prednisolone Immune suppressants (see MS above) | See MS above regarding drugs; ibuprofen should be avoided until after the first trimester & from 34 weeks (early fetal closure of ductus arteriosus) Postnatally — infant care e.g. lifting/carrying; flare-up of condition common within 6 weeks; breast-feeding may worsen symptoms but if performed advise analgesia 30–60 minutes after each feed (less secreted in next feed); no clear contraindications to hormonal contraception |
| Spina bifida | Congenital condition linked with folic acid deficiency — variable levels of severity | Leg control/mobility Lack of sensation Continence — urostomy/colostomy may be used Pressure area compromise UTId risk Latex allergy Anaemia risk from chronic infection Autonomic hyperreflexia (see text) | Management of continence Prevention of pressure sores/treatment of infection Regular screening/management of UTId | Preconception — folic acid at higher dose of 4 mg; general advice to reach optimum health including infection screening/management Pregnancy — infection screening/management — possible prophylactic antibiotics; identify/treat anaemia — possible prophylactic iron; extra care with pressure areas; compromised respirations in late pregnancy — risk of respiratory infection, advise physiotherapy; DVTb risk due to immobility Labour — onset of labour may not be perceived (or wind-like symptoms) & precipitate birth (teach mother how to palpate uterine contractions); second stage expulsive urge may be absent but vaginal birth possible; compromised respirations/anaesthetic risk; epidural probably unsuitable; autonomic hyyperreflexia (see text) Postnatally — perineal hygiene & pressure area care; UTId risk increased; no contraindication to breast-feeding; combined hormone contraception not recommended because of DVTb risk |
| Spinal cord lesions | Injury | Depends on injury site As with spina bifida High lesions compromised respiration/cough reflex Skill in managing activities of daily living will depend on how recent the injury | As with spina bifida | Preconception as for spina bifida although 0.4 mg of folic acid enough Pregnancy — risk of IUGRe; otherwise as with spina bifida Labour — significant risk of autonomic hyperreflexia (see text) therefore CVPf line & cardiac monitoring — if epidural possible it may reduce the risk; otherwise as for spina bifida |
| Achondro-plasia | Genetic mutation of short arm of chromosome 4 75% cases new mutation i.e. not inherited 25% cases autosomal dominantly inherited | Short stature & limbs; bow legs & abnormal gait; distinctive fingers; large head with distinctive features; joint mobility changes; spinal curvature & narrowing causing neurological symptoms & pain, airway obstruction/apnoea Hydrocephalus Small/abnormal pelvis Obesity Chronic ear infection & deafness Normal life span & intelligence | Anti-inflammatory drugs Life-style adaptations to minimise joint damage Environmental/life-style modifications to manage height issues Treatment to minimise chronic ear infection & deafness | Preconception — genetic counselling: mother only 50% chance of condition & 50% chance normality Mother & father 50% chance of condition, 25% normality, 25% lethal condition Pelvic X-ray Pregnancy — fetal screening i.e. chorionic villus & amniocentesis, ultrasound scan; mobility & back pain worse — analgesia; lung capacity falls — monitor respiratory function; neck X-ray to prepare for possible intubation at surgery Labour — forward planning; caesarean section likely; monitor blood gasses; avoid neck extension & care with spine to prevent nerve damage & paralysis Vein cannulation may be difficult Continuous epidural with careful dose control not spinal Postnatal — monitor post-op. respirations; practical help & support with infant care Paediatric referral if baby affected — avoid neck & joint damage, monitor breathing during feeds, look for signs of hydrocephalus |
| Muscular dystrophy | A group of inherited muscle degenerating disorders | Progressive voluntary & involuntary muscle weakness, including the heart | Limited treatment Physiotherapy Anti-inflammatory drugs & steroids | Preconception — ensure optimum health; review medication; genetic counselling; assisted reproduction with pre-implantation screening Pregnancy — ECG & pulmonary function Increased muscle weakness & fatigue Risk of miscarriage, pre-term birth, polyhydramnios & intrauterine death Labour — continuous cardiac monitoring & blood gases Vaginal birth possible but if caesarean section epidural safer than general anaesthetic Atonic uterus possible but responds to oxytocin Rapid cervical dilatation possible Risk of post-partum haemorrhage if uterus atonic — oxytocin for third stage Postnatal — respond to energy levels with support & help; breast-feeding possible depending on fatigue; combined hormone contraception not advised if mobility reduced as risk of DVTb |
| Deafness/hearing Impaired | 50–60% of early onset deafness due to autosomal dominant or recessive inheritance | Total or partial hearing loss May be deaf with speech or without depending on age hearing lost | Deaf aids to enhance any available hearing Use of sign language or lip reading | Preconception — genetic counselling Pregnancy — genetic screening; forward planning for help with communication & allow additional time; parent education requires alternative methods; visit to the maternity unit Labour & postnatal — forward planning for communication Paediatric referral if necessary |
| Blindness/visual impairment | Some conditions dominant recessive or X-linked e.g. retinitis pigmentosa | Visual loss may be total or partial | Aids for partial vision e.g. magnifying lens, large print text, white or ultrasonic stick Guide dog Braille Audible literature | Preconception — genetic counselling Pregnancy — information in appropriate format; guidance moving round clinic/hospital as required; parent education requires alternative methods; visit to the maternity unit Labour — forward planning; detailed information on layout of room, what is going on/who is in the room Postnatal — as for labour; help & support with infant care |
Not included are general medical conditions, for example diabetes, epilepsy, heart, renal or respiratory disease, or psychiatric conditions. Although they may be debilitating and therefore cause ‘dis-ability’, they are outside the scope of this book and are generally addressed adequately in other texts. Learning disability is not dealt with as the spectrum of cause and effects are vast and are well covered in readily available specific texts. Chapter 5 comprehensively discusses issues for women with learning disability in relation to pregnancy and childbirth. If you come across a woman with a condition not mentioned in this chapter it is essential that you perform your own literature review to learn as much about the condition as possible in order to offer evidence-based care.
Midwives with or without a nursing background may know little about the common disorders that lead to disability therefore brief information is given about the actual condition, for example how it may affect the individual and the medication that may be used. Included are details about the possible influence the condition or medication may have on a pregnant woman and the fetus, as well as how the pregnancy may affect the condition. It must be remembered however, that each person is an individual hence these details should be considered as a guide only, as some women will have less complications, whilst others will have more than expected. Additionally, what one person considers unacceptable, another will feel is tolerable and worthwhile, for example levels of pain or disability.
Some conditions are congenital or may have developed in early childhood and have therefore been long standing. Others may be relatively newly acquired, for example following an accident. The way someone perceives their situation, lives their life and copes with domesticity and new situations is unlikely to be the same in the two groups. Moreover, how one person adapts to a specific circumstance will not necessarily be the same as someone else even if their condition or disability is the same. It must also be understood that ‘invisible’ disabilities need to be acknowledged i.e. even if someone outwardly looks well they may still have difficulties in some aspect(s) of daily living. Additionally, some people with impairment do their best to hide this wanting not to broadcast their disability. Husbands’ or partners’ feelings and helping skills need to be taken into consideration and respected. They may have issues surrounding their own health or abilities particularly if they are disabled themselves. Finally, help from family, friends and assistants need to be taken into account, and their opinions and feelings recognised, as these could make considerable difference to pregnancy outcomes.
MUSCULOSKELETAL IMPAIRMENT
There are numerous conditions that affect the musculoskeletal systems and many of the principles related to each situation are the same. Some of the conditions have a neurological basis in their origin. A few of the more common ones are included below.
Cerebral palsy
Cerebral palsy is a condition that midwives are familiar with in that there is always concern for the fetus and neonate related to potential risk factors that may lead to the condition developing. The main symptom of the condition is motor impairment, often with spasticity, but the range of possible symptoms is wide and each individual will have very different levels of severity of effects. Following an extensive literature review Odding et al (2006) offer a very comprehensive insight into the incidence of the condition, the impairments that may occur and the risk factors associated with the condition developing. Their findings are summarised below.
It appears that the worldwide incidence of cerebral palsy has increased since the 1960s probably due to the increased survival of pre-term and small babies. Prevalence is greater in babies from low socio-economic families. The UK figures discovered by Odding et al are 3.33 per 1000 births in the most deprived population compared to 2.08 in the most affluent groups of society. This difference in rate remains noticeable even when birth weight is normal.
There are many possible causes of cerebral palsy although the cause may not actually be known. Odding et al’s findings are summarised as follows:
▪ Intrauterine infection (chorioamnionitis)—greatest significance in low birth weight babies.
▪ Low birth weight.
▪ In utero death of a co-twin.
▪ Multiple pregnancy—increasing with number of babies and when the babies are over 2500 g.
▪ Ante-partum haemorrhage especially from placental abruption.
▪ Cerebral ischaemia.
▪ Instrumental delivery.
▪ Birth asphyxia—although this is apparently controversial—low Apgar at 5, 10 and 20 minutes.
▪ Perinatal infections.
▪ Neonatal convulsions.
▪ Neonatal jaundice.
▪ Neonatal infection.
Odding et al state that 20–80% of people with cerebral palsy may have additional conditions. The following list of possible conditions has again been summarised from their literature review:
▪ Physical fatigue—probably due to the energy needed for motor movement.
▪ Weak muscles from lack of use.
▪ Hemiplegia—paralysis of one side of the body.
▪ Diplegia—paralysis of similar parts each side of the body.
▪ Tetraplegia—paralysis of all four limbs.
▪ Epilepsy.
▪ Cognitive ability diminished i.e. learning difficulty—often associated with epilepsy.
▪ Impaired sensibility of hands.
▪ Chronic pain—foot and ankle common.
▪ Speech impairment—as many as 80%.
▪ Hearing impairment.
▪ Low visual acuity—possibly due to cerebral visual disturbance.
▪ Urinary incontinence.
The organisation SCOPE focuses on the needs of people with cerebral palsy and offers information and support. Their online information sheet related to pregnancy and parenthood for people with cerebral palsy (Scope 2005) offers key information and advice. Preconception care and advice will enable the medication taken for muscle spasm or epilepsy to be reviewed prior to conception as some drugs may be teratogenic i.e. they have the potential to harm the fetus. General health and fitness can be improved through diet and exercise and folic acid supplements. The support of a physiotherapist may be beneficial in planning an exercise programme that helps to increase strength and flexibility of muscles and joints.
There appears to be no increased risk of miscarriage, premature birth or a baby with cerebral palsy. During pregnancy symptoms may improve. Swollen ankles are common in people with cerebral palsy and this may worsen during pregnancy. Some women find muscle spasms and tiredness increase, and labour pain may initiate muscle spasms. Frequent changes of position, massage or bracing may help to lower the number and frequency of spasms. Epidural analgesia can be used during labour in some cases but may not be possible if muscle spasms prevent the woman from keeping still during and after the procedure (Scope 2005). Attention to pressure and friction areas must be given to avoid damage to skin during times of immobility or spasms.
When motor function is affected transfer to the examination couch or bed may be difficult and will be improved if the equipment is height adjustable. Welner & Temple (2004) discuss the possible difficulty in examining a woman if her lower limbs are particularly rigidly flexed. This may have an impact during labour for vaginal examination and the birth if abduction of legs is compromised. Alternative positions need to be explored during pregnancy with a ‘dry run’ of positions that will enable these processes to take place. Lateral or even a modified knees-chest position may be useful. Midwives working in conjunction with a woman will enable the best solutions to be found. A key point is to ensure that any change of position is undertaken slowly to minimise the risk of initiating spasms (Welner & Temple 2004).
Following the birth additional rest and adequate family support may be necessary to combat fatigue. If lack of strength is an issue in the upper limbs alternative strategies may need to be developed for handling the baby. The help of an occupational therapist could be elicited during pregnancy and afterwards to work with a mother and her midwife to find alternative acceptable solutions. Breast-feeding is not contraindicated unless the medication a mother is taking is prohibitive. Again, if upper limb strength and dexterity are a problem changes in position and use of strategically placed supports for the baby may make feeding successful. If dexterity is impaired breast-feeding may be an easier option than making bottles of formula.
Contraception advice postnatally is offered to mothers if they wish it. If dexterity is impaired the diaphragm is unlikely to be suitable. If lower limb immobility is present the combined oral contraceptive pill is probably unsuitable because of the risk of deep vein thrombosis (DVT), and is not suitable when breast-feeding. The progesterone-only pill or other progesterone methods may be suitable depending on any medication a mother is taking. An intrauterine device or system may be suitable, unless a woman is unable to abduct her legs due to spasticity which makes insertion problematic.
Fibromyalgia
This is a complex non-inflammatory condition that leads to widespread muscular pain, joint pain and stiffness, and tender points on examination throughout the body. Csuka (2004) states that this tenderness is a cardinal sign for diagnosis of the condition, which is more common in women than men, and may have been present for many years prior to diagnosis. Csuka warns that diagnosis is difficult and misdiagnosis is common as symptoms are in many ways similar to osteoarthritis and rheumatoid arthritis, but the joints show no signs of damage. Additional symptoms include tiredness, non-satisfying sleep, gastro-intestinal problems, and swollen joint sensations (Csuka 2004, Schaefer & Black 2005). It is a relatively recently recognised condition that Cramer (1998) explains has similar symptoms to chronic fatigue syndrome (see myalgic encephalomyelitis below) and can cause the sufferer feelings of lack of control and loss of self-esteem. The American College of Rheumatology recognised the condition in 1989 (Schaefer & Black 2005).
The aetiology of the condition is unclear and medicinal relief of symptoms is patchy according to Csuka (2004). Aerobic exercise, treatment of sleep disorder, general health improvement and treatment of any concurrent depression or anxiety appear to be the best management (Cusak 2004). Cramer (1998) notes that, although short-term muscle activity that requires strength is affected during exercise, the cardio-vascular element of exercise is not. The most significant symptom is the fatigue that disrupts daily life, work and relationships, and the simultaneous depression (Schaefer & Black 2005). It is unclear if the depression is part of the syndrome or as a result of the debilitation that it leads to.
From their comprehensive literature review and Schaefer’s studies of women with fibromyalgia Schaefer & Black (2005) offer some valuable information related to the childbirth continuum. Preconception care and advice should encompass discussion about medication; diet, including folic acid supplements; and recognition and management of any anaemia. Women, their partners and families need to discuss how the increased tiredness associated with pregnancy will impact on their lives in order to plan and develop coping mechanisms.
Spontaneous miscarriage appears not to be increased, but symptoms of the condition may increase and are similar to those experienced by many women during pregnancy, for example back pain, nausea and vomiting. Schaefer & Black advise women to consider these increased symptoms as pregnancy orientated although they do warn that uterine cramps may also occur similar to those of pre-term labour. Tender points in the body may become worse due to the increased pressure from the growing uterus and this may make lying on the side too painful. Analgesics may be needed.
During labour adequate analgesia is important and every effort is made to ensure a mother’s comfort by using heat e.g. warm water, alternative positions and mobilisation, for example using a birthing ball and walking to maintain joint movements and lessen pain especially in knees, elbows and hips. Strategically placed cushions or foam wedges may help when lying down. Bright light and noise need to be avoided as these factors may increase pain perception and fatigue.
The postnatal period continues with the chronic fatigue and skeletal and muscle pain. Help and support from a woman’s family is important and she needs to ensure that she has adequate rest. Breast-feeding is possible provided that the additional support is available and that a mother does obtain the additional rest. Varying a baby’s position at the breast will help to alleviate pain on the sensitive points.
It must be remembered that this is an ‘invisible’ condition that can be excessively disabling therefore mothers need to receive sensitive care. Practitioners need to acknowledge that pain and fatigue are what a woman says they are, thereby showing respect for a mother’s symptoms.
Multiple sclerosis (MS)
This autoimmune condition may be ‘invisible’ as a disability in the early stages. It leads to a patchy loss of myelin that covers nerves of the spinal cord and brain, thus slowing nerve impulses. Although variable symptoms occur, it commonly presents with weakness, imbalance and fatigue. Additional symptoms may include bladder dysfunction e.g. frequency, incontinence or retention (Balzarro & Appell 2004) and bowel dysfunction, muscular spasms, stiffness and pain, difficulty with speech and vision, loss of sensation and depression. The depression is thought to have a physiological basis although the mechanism is unclear (Olkin 2004). Olkin also explains that people with MS may have cognitive difficulties and bouts of laughing or crying not associated with mood stimulation. MS symptoms can be made worse by fever or a hot environment (Neild 2006). The condition affects young adults (Lorenzi & Ford 2002) and is more common in women than men in a ratio of 2:1 (Olkin 2004). It is characterised by periods of relapse and remission but the disease is progressive over a number of years. However the prognosis appears uncertain and distinctive to the individual.
Neild (2006) explains that a woman’s fertility appears to be unaffected by the condition and pregnancy has no long-term affects on the progress of the disease. Although not considered an inherited condition, there does appear to be a higher incidence of MS in the children of parent(s) with the condition (Neild 2006). Preconception advice would include discussion about the drugs taken to modify the condition or alleviate symptoms and these may need to be stopped for 3 months prior to conception. Drugs taken to modify the condition e.g. methotrexate and cyclophosphamide are not suitable during pregnancy (Ferrero et al 2004) while others are safer, including steroids e.g. prednisolone (Baschat & Weiner 2004). Higher rates of congenital abnormalities have been noted with methotrexate and cyclophosphamide (Chakravarty et al 2003, Gordon 2004, Le Gallez 1999) and Gordon (2004) warns that steroids are associated with high blood pressure, pre-eclampsia, diabetes and infection risk. It must be remembered that if a woman has been taking steroids during pregnancy she is likely to need a loading dose during labour (Baschat & Weiner 2004) to enable her body to cope with the additional stress. Some drugs e.g. azathioprine and cyclosporine have a slight risk of causing intrauterine growth retardation (IUGR) and prematurity (Ferrero et al 2004).
During pregnancy the condition often improves or is stable (Ferrero et al 2004, Lorenzi & Ford 2002) especially during the third trimester (Vukusic et al 2004). This improvement is thought to be as a result of the altered immune state of the mother (that prevents rejection of the ‘foreign’ fetal protein) influencing the course of the condition (Lorenzi & Ford 2002) by some temporary re-myelination of the nerves. However, it must be acknowledged that this will not be so for some women. Additionally, as Neild (2006) warns, fatigue, balance and back pain may worsen during pregnancy due to the weight of the gravid uterus and the altered centre of gravity. In these circumstances a walking aid may help mobility and confidence.
If a mother’s lower limbs are weak she may need time and help to get into position on the examination couch during antenatal visits. Existing bladder and bowel problems may be aggravated. Baschat & Weiner (2004) recommend the consideration of prophylactic antibiotics if urinary infection has been problematic. As one symptom of the condition is tiredness, anaemia should be avoided and prophylactic iron supplementation may need to be considered (Baschat & Weiner 2004).
The mode of delivery is not influenced by the condition (Ferrero et al 2004). Baschat & Weiner (2004) do warn that some women may not feel the onset of labour. It is important that midwives explain to women during pregnancy that there is a possibility that they may not perceive pain during contractions, and show them how to palpate the uterine fundus in order to feel the rise during a contraction. This will enable women to be alert to any hint of labour and seek admission to hospital or the attendance of a midwife. Otherwise there is a risk of a precipitate labour and an unattended birth occurring.
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