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 personÃÛÌÒÖ±²¥™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:
- .
National Screening programme for:
(2020) contains tools and resources designed primarily to enable primary care teams to continue to effectively manage patients with long-term conditions.
See:
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.
- Cancer Research UK (2020)
- Macmillan (2017) . This webpage explains the emotional and practical issues some women may face during pregnancy and childbirth
- 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)
- Securicare.
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.
- Elkayam U. et al (2016) . Journal of the American College of Cardiology, 68(4):396-410
- Elkayam U. et al (2016) 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)
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.
- NICE (2019, updated 2023)
- NHS (2021)
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
- . A genetic conditions support network
- GOV.UK (2013)
- NHGRI (2018)
- NHS (2017) (blog)
Downs Syndrome
- Down’s Syndrome Association (2020)
- McKenzie K (2014) . Nursing Times, 110: 22, 21-23
Prenatal/Antenatal Screening:
- GOV.UK (2020).
- NHS.
- Royal College of Obstetricians and Gynaecologists (2020)
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
- NHS (2018)
- NHS (2019)
- NHS (2019)
- NHS Wales.
- NICE (2015, being updated 2020)
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) , , March 2017.
- British Thyroid Foundation (2018)
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)
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) Int J Womens Health. 2016; 8: 441–451
- Public Health England (PHE) (2018)
Coagulation disorders (Haemophilia)
- RCOG (2017)
- RCOG 2017
Anaemia
- Pavord S., Daru J., Prasannan N., Robinson S., Stanworth S. and Girling J. (2019) 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)
- 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)
- HM Government Green Book (2024)
- Public Health England (2019)
HIV
- BHIVA (2018/2019)
Parasitic diseases
- Centers for Disease Control and Prevention (CDC) (2018)
Malaria
- Royal College of Obstetricians and Gynaecologists (RCOG) (2010)
Helminths
- Mpairwe H., Tweyongyere R. & Elliott A. (2014) , Parasite Immunology 36: 328-337
Toxoplasmosis
- NHS (2023)
- Tommys (2021)
- WebMD (2021)
Congenital Cytomegalovirus Infection (CMV)
- NHSGGC Paediatrics for Health Professionals – Scotland (2022)
- RCOG (2017)
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) , Ann Rheum Dis 2017;76:476–485
- Lupus Trust (2023)
Inflammatory bowel disease
- Crohn’s and Colitis UK (2023)
- Up to Date (2020)
- . 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 . 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)
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:
Further resources
- British Liver Trust.
- National Kidney Foundation (2020)
- National Kidney Foundation (2020)
- Tran T., Ahn J. Reau, N. (2016) , American Journal of Gastroenterology, 111: 176-193
- Wiles K., Tillett A. and Harding K. (2016) , 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) , Journal of the Belgian Society of Radiology, 101(S2) p1-9
Rheumatoid arthritis
- British Society for Rheumatology (2022)
Wheelchair users
- Emma’s Diary (2019)
Osteoporosis
- . Website providing osteoporosis support
- RCN 2024 Osteoporosis and Pregnancy Associated Osteoporosis
Symphysis Pubis dysfunction / pelvic girdle pain
- Pelvic Partnership (2018)
- Royal College of Obstetricians and Gynaecologists (RCOG) (2015)
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)
Motor neurone disease
- NHS (2021)
- Healthtalk (2019)
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)
- NHS (2024)
- Women with Epilepsy (2021)
- Epilepsy Society (2023)
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)
- Muscular Dystrophy UK (2020)
Multiple Sclerosis
- MS Society (2016)
- MS Society (2018)
- Dobson R., Dassan P., Roberts M., Giovannoni G., Nelson-Piercy C. & Brex P. (2019) , 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)
- NICE (2020, updated 2021)
Cystic fibrosis
- Girault A., Blanc J., Gayet V. Goffinet F. & Hubert D. (2016) , Respiratory Medicine, 113:22-27
- Goddard J. & Bourke S. (2009) , The Obstetrician and Gynaecologist, 11:19-24
General resources
ACED (2020)
Byrnes L., Hickey M. (2016) s. Journal for Nurse Practitioners, 12(8):503-509
Birthrights (2024)
. Disability Rights UK is run by and for people with lived experience of disability or health conditions
King’s Fund (2020)
Mackay-Moffat S. (2007) Disability in childbirth London: Churchill Livingstone
NICE (2019)
Page last updated - 28/10/2024