Physical disabilities and long term conditions
A physical disability, or physical impairment, which may have a substantial and/or long-term adverse effect on a person’s ability to carry out normal day-to-day activities, is considered below. This may include long-term conditions, which may have an impact on daily living, as well as physical challenges faced by some individuals. Again, the key message here is about individuality, and not assuming that any condition affects everyone in the same way.
When considering how to approach this for pregnant and childbearing women, the focus here is on long-term conditions, such as cardiac or respiratory conditions, often with a medical basis requiring medical intervention and support over a long period of time. We have also included chromosomal/genetic conditions, cancer and musculoskeletal conditions. These conditions can be managed using medication, and/or devices which can improve their daily living.
Women with a long-term condition who become pregnant may face particular challenges; however, the emphasis is that they will know more about their condition, and how it affects them, and so the specific support required from healthcare professionals is sensitivity, listening and enabling a positive experience for that individual.
The mother/and her partner may also be concerned about any risk to the fetus of a similar disorder, and may wish to focus initially on prenatal screening to enable them to make the best decision for their family, or may indeed be concerned about the reaction of healthcare professionals. Further information on Prenatal/Antenatal Screening can be found at:
- Antenatal Results and Choices (ARC)
- GOV.UK (2020). Screening tests for you and your baby
- NHS. Screening tests in pregnancy
- Royal College of Obstetricians and Gynaecologists. Consensus statement on pregnancy screening.
National Screening programme for:
Long-term condition support (2020) contains tools and resources designed primarily to enable primary care teams to continue to effectively manage patients with long-term conditions.
Cancer is when abnormal cells divide in an uncontrolled way, which can eventually spread into other tissues.
There are more than 200 different types of cancer, and it can be a devastating diagnosis for anyone and their family. Some women who are pregnant will be in recovery and living with a condition, whist others may be newly diagnosed and challenged with deciding on treatment options, whist some women will be diagnosed during pregnancy.
The role of the midwife will be different depending on the woman’s circumstances, and the overriding message, as always, is support for the woman, her partner and family as required. The following resources may help with that support.
One example of care may be supporting a woman who has stoma, either short or long term, again this will be about tailoring care to meet her needs - she knows how her stoma functions and understands the need to change it, however she may struggle as pregnancy advances, or afterwards when feeding her baby.
Further resources
- Canadian Society of Intestinal Research. Pregnancy with an ostomy
- Cancer Research UK (2020) Being pregnant at diagnosis
- Macmillan (2017) Cancer and pregnancy. This webpage explains the emotional and practical issues some women may face during pregnancy and childbirth
- Mummy’s Star. Mummy's Star is a charity specifically for cancer in pregnancy with resources both for health professionals and women and families
- Royal College of Obstetricians and Gynaecologists (2011) Pregnancy and breast cancer
- Securicare. Sex and pregnancy care with a stoma
Cardiac disease remains a leading cause of maternal death in pregnancy and postnatal. The conditions include myocardial infarction, ischaemic heart disease, aortic dissection, peripartum cardiomyopathy, rheumatic heart disease, aortic dissection and congenital heart disease The Royal College of Obstetrics and Gynaecology's (RCOG) Good Practice Guide provides further details on these conditions.
Further resources
- British Heart Foundation. Pregnancy and heart disease
- Elkayam U. et al (2016) High risk cardiac disease in pregnancy Part 1. Journal of the American College of Cardiology, 68(4):396-410
- Elkayam U. et al (2016) High risk cardiac disease in pregnancy Part 2. Journal of the American College of Cardiology 68(5):502-516
- European Society of Cardiology (2018) 2018 ESC Guidelines for the management of cardiovascular diseases during pregnancy. European Heart Journal, 39, 3165-3241
- RCOG (2011) Cardiac disease and pregnancy: Good Practice Guide
Pre Eclampsia, gestational hypertension
Pre Eclampsia and gestational hypertension (during pregnancy) affect around 8-10% of all pregnant women and may be associated with significant complications for both the woman and her baby/babies. Gestational hypertension is when blood pressure is higher than 140/90 mm Hg in a woman who had normal blood pressure before 20 weeks gestation and has no proteinuria (excess protein in the urine). Pre eclampsia is classically considered when that high blood pressure is accompanied by proteinuria.
- Action on Pre-eclampsia. Pre-eclampsia Community (Precog) Guidelines
- NICE (2019, updated 2023) Hypertension in pregnancy: diagnosis and management NICE guideline [NG133]
- NHS (2021) Pre-eclampsia
Genetic disorders is a collective team for all conditions caused by a genetic or chromosomal abnormality. They can be inherited conditions, but may not be. When women with genetic disorders become pregnant, they will have lived with this condition, and will be familiar with the needs they may have, however the professional help will be with adapting to pregnancy and childbirth. The pregnant woman and her partner may also be concerned about the risk to the fetus of a genetic disorder, requiring support around fetal anomaly assessments.
Further resources
- Gene People. A genetic conditions support network
- GOV.UK (2013) Fetal anomaly screening programme
- NHGRI (2018) Genetic disorders
- NHS (2017) Building a brighter future for the millions living with genetic disease (blog)
Downs Syndrome
- Down’s Syndrome Association (2020) About Down's Syndrome: FAQs
- McKenzie K (2014) Identifying parents with learning disabilities. Nursing Times, 110: 22, 21-23
Prenatal/Antenatal Screening:
- Antenatal Results and Choices (ARC)
- GOV.UK (2020). Screening tests for you and your baby
- NHS. Screening tests in pregnancy
- Royal College of Obstetricians and Gynaecologists (2020) Supporting women and their partners through prenatal screening for Down's syndrome, Edwards' syndrome and Patau's syndrome
The endocrine system is made up of glands that produce and release hormones, whose main function is to control body functions. A disorder in one of the glands may cause overproduction or underproduction of the relevant hormones.
Diabetes
Cells in the pancreas control the release of the hormones insulin and glucagon, which can lead to diabetes if disordered. Diabetes is a long term condition, that causes a high blood sugar level. There are two main types:
- Type 1 diabetes – where the immune system destroys the cells that produce insulin
- Type 2 diabetes – where the body produces insufficient insulin, or the body cannot react to the insulin being produced
Gestational diabetes is a condition specific to pregnancy, where there is a high blood glucose level. This usually disappears after the postnatal period, although some women will continue to suffer from diabetes after this.
Further resources
- Diabetes.co.uk
- Diabetes in Scotland
- Diabetes UK
- Diabetes UK (Northern Ireland)
- Diabetes UK (Scotland)
- Diabetes UK (Wales)
- NHS (2018) Diabetes and pregnancy
- NHS (2019) Diabetes
- NHS (2019) Gestational Diabetes
- NHS Wales. All Wales Diabetes Prevention Programme (AWDPP)
- NICE (2015, being updated 2020) Diabetes in pregnancy: management from preconception to the postnatal period NICE guideline [NG3]
Thyroid disorders
Disease of the thyroid can cause issues with conception and problems in pregnancy. The British Thyroid Foundation (BTF 2018) provides further details about the impact of diseases of the thyroid.
Further resources
- Baragwanath G. & Vaidya B. (2017) Thyroid disorders in pregnancy, British Journal of Family Medicine, March 2017.
- British Thyroid Foundation (2018) Pregnancy and thyroid disorders - guidance for patients
Pituitary and adrenal gland disorders
The pituitary gland is situated at the base of the brain, and is responsible for controlling many other hormones. Disruption of normal functioning can affect bone growth, menstrual cycles, and breast milk release.
- Frise C. & Williamson C. (2013) Endocrine disease in pregnancy Clinical Medicine 13(2): 176-181 (NEED LINK)
- Greater Manchester and Eastern Cheshire SCN (2018) Endocrine Disorders in Pregnancy Guideline
Haematological disorders is the collective term for disorders of the blood, and those that most impact on women during pregnancy, labour or postnatally may include Haemoglobinopathies, Coagulation disorders (Haemophilia) and/or Anaemia.
Haemoglobinopathies
Haemoglobinopathies are a complex group of red blood cell disorders, also referred to as autosomal recessive inherited disorders of haemoglobin synthesis (thalassaemia) or structure (sickle cell) that are responsible for significant complications both for mothers and their infants.
- Petrakos, G. et al (2016) Pregnancy in women with thalassemia: challenges and solutions Int J Womens Health. 2016; 8: 441–451
- Public Health England (PHE) (2018) Understanding Haemoglobinopathies
- Sickle Cell Society - Supporting People Affected by Sickle Cell Disorder
Coagulation disorders (Haemophilia)
- RCOG (2017) Management of inherited bleeding disorders in pregnancy: Green Top Guideline
- RCOG 2017 Management of Inherited Bleeding Disorders in Pregnancy (Green-top Guideline No. 71)
Anaemia
- Pavord S., Daru J., Prasannan N., Robinson S., Stanworth S. and Girling J. (2019) UK guidelines on the management of iron deficiency in pregnancy British Journal of Haematology 188: 819-830
There are a wide range of infectious diseases, which pregnant women may have or be diagnosed with. Winson (2018) provides a good overview of those that midwives need to be familiar with, whilst HM Governments 2016 publication, provides an overview of risks to pregnant women from infections: current screening, vaccination, treatment and prevention programmes.
Further resources
- RCN. COVID-19
- HM Government (2016) Infectious diseases during pregnancy: screening, vaccination and treatment
- Winson N. (2018) Infectious diseases in pregnancy in Lindsay P., Bagness C. & Peate I. Midwifery Skills at a Glance Oxford: Wiley Blackwell
Tuberculosis
- HM Government Green Book (2018) Chapter 32 Tuberculosis
- HM Government Green Book (2024) Chapter 18 Hepatitis B
- Public Health England (2019) Pregnancy and Tuberculosis (TB)
HIV
- BHIVA (2018/2019) British HIV Association guidelines for the management of HIV in pregnancy and postpartum (2019 second interim update)
Parasitic diseases
- Centers for Disease Control and Prevention (CDC) (2018) Women and parasites
Malaria
- Royal College of Obstetricians and Gynaecologists (RCOG) (2010) The diagnosis and treatment of malaria in pregnancy: Green–top Guideline No. 54b
Helminths
- Mpairwe H., Tweyongyere R. & Elliott A. (2014) Pregnancy and helminth infections, Parasite Immunology 36: 328-337
Toxoplasmosis
- NHS (2023) What are the risks of toxoplasmosis during pregnancy?
- Tommys (2021) Toxoplasmosis and pregnancy
- WebMD (2021) Toxoplasmosis
Congenital Cytomegalovirus Infection (CMV)
- NHSGGC Paediatrics for Health Professionals – Scotland (2022) Cytomegalovirus (CMV) - congenital infection
- RCOG (2017) Congenital Cytomegalovirus Infection: Update on Treatment
Inflammatory diseases is a collective team for any condition mainly characterised by inflammation. This may include: allergy, asthma, autoimmune diseases, coeliac disease, systemic lupus, erythematosus, hepatitis or inflammatory bowel disease.
Further resources
Lupus / SLE (Systemic lupus erythematosus)
- Andreoli L., Bertsias G., Agmon-Levin M. et al (2017) EULAR recommendations for women’s health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome, Ann Rheum Dis 2017;76:476–485
- Lupus Trust (2023) Lupus and pregnancy
Inflammatory bowel disease
- Crohn’s and Colitis UK (2023) Pregnancy and IBD
- Up to Date (2020) Patient education: Inflammatory bowel disease and pregnancy (Beyond the Basics)
- From Bump to Baby with IBD. This project explored the pregnancy and postnatal experiences of women with inflammatory bowel disease (Crohn’s disease/Ulcerative Colitis). The final report and the co-produced resource have now been published. There is also an alert card for mothers who take biologics/immunosuppressants and this can be kept in baby’s red book. The resource is highly accessible and the mother-to-be can keep it alongside their maternity notes as their pregnancy progresses.
The integumentary system comprises the skin and its appendages acting to protect the body from various kinds of damage, such as loss of water or damages from outside. Disorders of the integumentary system include psoriasis, acne, pressure ulcers, sunburn and skin cancer.
Further resources
Psoriasis
- National Psoriasis Foundation (2018) Treatment and pregnancy
Any disorder of a body system can impact on the pregnancy, and this will depend on the severity of the disease from mild through to more complex cases of women being on dialysis or following transplants.
Obstetric cholestasis
is a disorder that affects the liver during pregnancy, causing abnormal liver function tests and/or raised bile acids occur and both resolve after delivery. The main symptom is itching of the skin. In the UK, it affects less than 1% of pregnant women - about 7 in 1000. It is more common among women of Indian- Asian or Pakistani-Asian origin, with about 1.5% (15 in 1000) affected.
See:
RCOG (2022) Obstetric Cholestasis Green–top Guideline No. 43
Obstetric Cholestasis Patient Information Leaflet
Further resources
- British Liver Trust. Symptoms of liver disease
- National Kidney Foundation (2020) Pregnancy and kidney disease
- National Kidney Foundation (2020) Having children after transplant? 10 FAQs
- Tran T., Ahn J. Reau, N. (2016) ACG Clinical Guideline: Liver Disease and Pregnancy, American Journal of Gastroenterology, 111: 176-193
- Wiles K., Tillett A. and Harding K. (2016) Solid organ transplantation in pregnancy, The Obstetrician and Gynaecologist ,18: 189-197
Conditions that affect the Musculo-skeletal system’ can have a profound affect on fertility, being pregnant, labour and supporting women to look after their new born.
Further resources
- Riari H. et al (2017) Pelvic Musculoskeletal Disorders Related to Pregnancy, Journal of the Belgian Society of Radiology, 101(S2) p1-9
Rheumatoid arthritis
- British Society for Rheumatology (2022) Guidelines to support prescribing in pregnancy and breastfeeding
Wheelchair users
- Emma’s Diary (2019) Coping with a physical disability and pregnancy
Osteoporosis
- myOsteoteam. Website providing osteoporosis support
- RCN 2024 Osteoporosis and Pregnancy Associated Osteoporosis
Symphysis Pubis dysfunction / pelvic girdle pain
- Pelvic Partnership (2018) About PGP
- Royal College of Obstetricians and Gynaecologists (RCOG) (2015) Pelvic girdle pain and pregnancy
Neurological disorders affect the central and peripheral nervous system, which includes the brain, spinal cord, cranial nerves, peripheral nerves, nerve roots, autonomic nervous system, neuromuscular junction, and muscles. These include cerebral palsy, multiple sclerosis, epilepsy and motor neurone disease.
Further resources
Cerebral Palsy
- Cerebral Palsy Guidance (2024) Having Children When You Have Cerebral Palsy
Motor neurone disease
- NHS (2021) Motor Neurone Disease
- Healthtalk (2019) Sarah – Interview 21
Epilepsy
- Viale L., Allotey J., Cheong-See F., Arroyo-Manzano D., Bagary M., Mignini L., Khan K., Zamora J. & Thangaratinam S. (2015) Epilepsy in pregnancy and reproductive outcomes: a systematic review and meta-analysis Lancet Vol. 386, November 7th, 1845-1852
- Royal College of Obstetricians and Gynaecologists (RCOG) (2016) Epilepsy in Pregnancy: Green Top Guideline
- NHS (2024) Epilepsy and pregnancy
- Women with Epilepsy (2021) Maternity epilepsy shared-care toolkit
- Epilepsy Society (2023) Pregnancy and parenting
- Developing a preconception care pathway for women with epilepsy IRAS276652.
A research team based at the University of Liverpool and The Walton Centre NHS Foundation Trust (Sponsor) manages this NIHR funded study (NIHR200791).
Muscular dystrophies
- NHS (2021) Overview - Muscular dystrophy
- Muscular Dystrophy UK (2020) Pregnancy and fertility
Multiple Sclerosis
- MS Society (2016) What is MS?
- MS Society (2018) MS in the UK
- Dobson R., Dassan P., Roberts M., Giovannoni G., Nelson-Piercy C. & Brex P. (2019) UK consensus on pregnancy in multiple sclerosis: ‘Association of British Neurologists’ guidelines, Practical Neurology,19:106-114
Any condition that affects the respiratory system has the potential to impact on pregnancy. Respiratory conditions may be infectious and chronic.
Further resources
Asthma
- British Thoracic Society and Scottish Inter-Collegiate Guidelines Network (2019, update due 2024) SIGN158 British guideline on the management of asthma
- NICE (2020, updated 2021) Asthma: diagnosis, monitoring and chronic asthma management
Cystic fibrosis
- Girault A., Blanc J., Gayet V. Goffinet F. & Hubert D. (2016) Maternal and perinatal outcomes of pregnancies in women with cystic fibrosis: A single centre case-control study, Respiratory Medicine, 113:22-27
- Goddard J. & Bourke S. (2009) Review: Cystic Fibrosis and pregnancy, The Obstetrician and Gynaecologist, 11:19-24
General resources
ACED (2020) Pregnancy in women with disabilities
Byrnes L., Hickey M. (2016) Perinatal Care for Women With Disabilities: Clinical Considerations. Journal for Nurse Practitioners, 12(8):503-509
Birthrights (2024) Disability and long-term health conditions and maternity care
Disability Rights UK. Disability Rights UK is run by and for people with lived experience of disability or health conditions
King’s Fund (2020) Long-term conditions and multi-morbidity
Mackay-Moffat S. (2007) Disability in childbirth London: Churchill Livingstone
Page last updated - 28/10/2024