This resource is designed to provide you with useful information to utilise during your pregnancy. If there is anything you are unsure about or wish to discuss further please contact your cystic fibrosis team.
During your pregnancy you will have monthly multidisciplinary clinic reviews in which you will be reviewed by a consultant, specialist nurse, physiotherapist, dietician and pharmacist. A cystic fibrosis social worker and psychologist are also available for support. The cystic fibrosis team will be in close contact with your obstetrics team to plan your pregnancy and delivery. Following delivery, the cystic fibrosis team will arrange a virtual multidisciplinary review to help support you and your family post-birth.
You can join the arranged virtual call via Attend Anywhere
Planning a pregnancy
There has been a rise in pregnancies among people with cystic fibrosis in the last few years. As people with cystic fibrosis are living longer and healthier lives, we want to support them in their parenthood choices and decisions.
Pregnancy in cystic fibrosis may have more risks, so we recommend that your pregnancy be planned. This is so that your health is as good as possible and that your medication is checked to make sure that you and your baby are safe.
If you are pregnant, or planning pregnancy, we will refer you to our regional maternal medicine service at the RVI, where obstetricians who have experience in looking after pregnant women with cystic fibrosis will talk to you about your pregnancy. Wherever possible, we will do our best to support you in your delivery choices and most patients with CF can deliver their baby where they choose.
As cystic fibrosis is an inherited condition, we offer genetic screening for the partners of all our patients, which can be done during your clinic appointment and is done with a simple blood test.
Parenthood is a challenging time for everyone. Managing your cystic fibrosis with a new baby can be daunting. Speak to your cystic fibrosis team if you are thinking about family planning or if there is something that you are worried about.
The CF trust have created a useful information leaflet on starting a family.
Airway clearance
Regular airway clearance is important throughout pregnancy to reduce the risk of complications. Often in the early stages of pregnancy you will continue with your usual physiotherapy regime. As your pregnancy advances you may find a reduced ability to take a deep breath. Your usual airway clearance regime may need to be reviewed and optimised at this stage. This may involve a change of technique or device, a change in frequency of airway clearance or a change of position.
You will have regular clinic reviews throughout your pregnancy in which the physiotherapy team will discuss and review your airway clearance. They will work alongside you to optimise your airway clearance technique to ensure effective chest clearance throughout your pregnancy.
The Cystic Fibrosis Trust have produced helpful leaflets explaining each of the common airway clearance techniques.
Medications
Changes may be made to your regular medications during pregnancy. Most medications regularly prescribed for cystic fibrosis are safe to continue, but some are deemed unsafe to use during pregnancy and may need to be avoided or changed. Your cystic fibrosis consultant and pharmacist will discuss any changes with you.
The use of nebulisers such as DNase and hypertonic saline may be recommended or increased during pregnancy to help optimise airway clearance.
Kaftrio is not licensed for use in pregnancy and so the decision to continue it is individual to each patient. Many people choose to continue Kaftrio to support their health through pregnancy and we are not aware of harm caused to mother or baby. You should have a conversation with your cystic fibrosis consultant about this when you are planning your pregnancy. If you have found out you are pregnant, please speak with your cystic fibrosis team before making any changes to your medications.
You and your baby will be closely monitored throughout your pregnancy to ensure continued safe use of Kaftrio and we may recommend that your baby has extra tests at birth (including liver function tests and testing for cataracts).
Exercise
Exercise during pregnancy is safe and encouraged. Exercise can help to increase your joint flexibility and muscular strength, maintain your fitness, prevent loss of lung function and aid chest clearance reducing your risk of chest infections.
The UK government advises 150 minutes of moderate intensity exercises every week throughout pregnancy. Pelvic floor and core strengthening exercises are particularly important.
If you already exercise regularly, we recommend you continue to maintain your current exercise regime during the pregnancy for as long as you feel able to.
If you do not currently partake in exercise even small amounts of exercise can be beneficial, for example regular walking or gentle strengthening exercises. Yoga and Pilates have both been shown to be beneficial during pregnancy. Non-weight bearing exercises such as swimming may be easier towards the latter stages of pregnancy.
It is recommended to avoid extreme sports (e.g. horse-riding), contact sports (e.g. rugby) and heavy lifting during pregnancy, and to avoid laying flat for long periods of time in the second and third trimester.
Your physiotherapist will discuss exercise options with you during your clinic appointments. They can support you with home exercise programmes, outpatient exercise sessions and general exercise advice.
For support with appropriate exercise routines please contact the Physio team: [email protected]
Further information on staying active when pregnant is also available.
Nutrition
Good nutrition is essential to help support a healthy pregnancy. Energy and nutrient requirements increase to enable your baby to grow and develop, and to support your own health.
A balanced diet including starchy carbohydrate, protein, healthy fats and fibre is encouraged during pregnancy. If you have a low or high BMI and are concerned about gaining weight during pregnancy your CF dietitian will support you with this.
The Cystic Fibrosis trust have created a helpful leaflet on Nutrition and Pregnancy in Cystic Fibrosis.
Food Safety
It is advised to avoid certain foods during pregnancy as they may be harmful to your baby.
For more information on this, diet in pregnancy and guidance regarding caffeine and alcohol please see the British Dietetic Association guidance.
Vitamins and minerals
Your prescribed cystic fibrosis vitamins (DEKA Essential, DEKA plus and Vitamin D) are safe to take throughout pregnancy. If you take any other supplements, please discuss these with your cystic fibrosis dietitian.
Folic Acid – A supplement of 400 micrograms should be taken as soon as you are planning to become pregnant and up to the 12th week of pregnancy.
Oral Nutritional Supplement drinks – Please discuss with your CF dietitian if you take these.
Vitamin D – If you don’t already take Vitamin D supplements it is recommended that you take one containing 10 micrograms per day.
Please inform your CF Dietitian if you taking any additional nutritional supplements.
Cystic fibrosis diabetes
If you have cystic fibrosis diabetes it is essential that you have good blood glucose control when planning a pregnancy and throughout your pregnancy to help you and your baby stay healthy.
Please attend your diabetes appointments and contact your cystic fibrosis or obstetric team if you have any concerns regarding your diabetes.
Pregnancy side effects
Pregnancy side effects such as nausea, sickness, heartburn and constipation can have an impact on your nutritional intake. If you have any queries or concerns your cystic fibrosis dietitian is happy to discuss these with you during your clinic appointment or via telephone.
Pelvic Health
Urinary incontinence is common during pregnancy and after giving birth. Increased pressure on the pelvic floor from the foetus throughout pregnancy and during childbirth can exacerbate urinary incontinence. Having Cystic Fibrosis increases your risk of urinary incontinence as the pelvic floor muscles often become weakened from excessive coughing.
If you are struggling with urinary incontinence or would like further advice speak to your physiotherapist about further treatments.
If you are due to give birth at the Royal Victoria Infirmary you can self-refer to the pelvic health physiotherapists up to 3 months’ post giving birth. Contact the admin team on 0191 28 25484 to refer yourself.
The CF trust have created a handy leaflet demonstrating pelvic floor exercises. These should be done regularly throughout pregnancy to reduce the symptoms of urinary incontinence.
The Newcastle Hospitals pelvic health physiotherapy team have a useful website and app and regularly post helpful information.
Musculoskeletal Health
The muscles and joints of the body come under increased strain during pregnancy. This can lead to musculoskeletal issues and pain. The most common ailments are low back pain and pelvic girdle pain.
Regular exercise, exercise programmes targeting specific muscles/joints and regular stretching can help to reduce pain and discomfort.
Ensuring you keep a good posture during exercise and airway clearance can reduce the strain on your muscles and joints.
If you experience any musculoskeletal issues during pregnancy speak with your physiotherapist and they will be able to advise on suitable exercises and onward referrals. If you live in the Newcastle area you can self-refer to the musculoskeletal physiotherapy team (TIMS).
Other issues
Nasal congestion – It is common to get increased sinus congestion during pregnancy. This can reduce your ability to breathe through your nose, altering your normal breathing pattern. There are various devices and medications which can aid nasal clearance, speak to your physiotherapist for further advice if you are experiencing these symptoms.
Breathing pattern – During pregnancy you may find it more difficult to breathe deeply or through your nose. This can lead to an altered or abnormal breathing pattern which can reduce the efficiency of your breathing and make you feel more out of breath. Your physiotherapist will regularly assess for changes in breathing pattern, if you feel more breathless or notice any changes to your breathing discuss this with your physiotherapist who will be able to advise on breathlessness management techniques.
Supplementary oxygen and Non-invasive ventilation – As your foetus grows your lung volume will reduce, your lungs may therefore have more difficulty taking on oxygen and removing carbon dioxide. In people with more extensive lung disease they may require supplementary oxygen or the use of a non-invasive ventilator during pregnancy to support the lungs. This may be required during exercise, at rest or overnight. Your CF team will regularly assess for this. If you experience any morning headaches or morning drowsiness speak with your CF team for further advice.
Giving birth
Your cystic fibrosis team will be in regular contact with your obstetrics team to plan for the birth. Ensure you pack any airway clearance devices, medications and nebulisers in your hospital bag. If you are giving birth at the Royal Victoria Infirmary the cystic fibrosis team will review you during your stay. If you are giving birth elsewhere you can contact the cystic fibrosis team for any advice pre, during and post labour.
Cystic fibrosis care post birth
Caring for a newborn baby can be an exciting but tiring time. Cystic fibrosis treatments are often put aside whilst you get used to life with a newborn.
The cystic fibrosis team are here to help you adjust to your new life, including supporting you with fitting in cystic fibrosis care and treatments.
If you are having a C-section you may experience pain or discomfort post birth. This can affect your ability to mobilise or exercise and to complete your airway clearance. Ensure you have regular pain relief before doing airway clearance or exercise. Often hugging a pillow or towel whilst coughing can help to reduce discomfort. Contact your CF physiotherapy team if you need any advice.
Breastfeeding
There are many benefits of breastfeeding and many people with cystic fibrosis choose to breastfeed, although some may be unable to. Your cystic fibrosis team will support you in the decisions you make around feeding your baby. You should have a discussion with your consultant and dietitian about breastfeeding prior to giving birth. Additional calories and good hydration are required when breastfeeding, your dietitian and consultant will be able to support you with nutritional changes. Some medications are deemed unsafe to use whilst breastfeeding. Your cystic fibrosis consultant and pharmacist will discuss any changes with you.
