A healthy body is important for all women during pregnancy. For women with CF, there are a number of things to consider, including planning for pregnancy, nutrition, lung function and planning for birth.
Changes to your body during pregnancy
During pregnancy, a woman’s metabolism increases, and her heart and lungs need to accommodate the changes to her body. The way lungs react to pregnancy varies a lot between individuals. Hormonal changes, and a growing baby making less space for lung expansion, can cause breathlessness for many women, including those without cystic fibrosis.
Lung function
For women with CF, breathlessness may be an issue, especially during physical exertion. Stable lung function is not generally impacted by pregnancy in the long term, but sometimes lung function may decrease during pregnancy, needing increased monitoring. This is because the baby takes up space in the chest cavity as it grows.
Research suggests that, generally, pregnant women with CF have more hospital admissions, a higher incidence of insulin-dependent diabetes and reduced lung function. Once the baby is born, lung function usually returns to pre-pregnancy levels. Due to these factors, it is imperative that women with CF stay in close communication with their treating team throughout their pregnancy to monitor any changes.
Nutrition
Pregnant women will usually need about 200 extra calories a day in the last trimester, but for women with CF, calorie requirements will vary throughout their pregnancy according to the women’s health and nutritional status. For some women with CF, these extra calories may be hard to achieve, and they may be advised by their CF dietitian about the need for oral nutritional supplements, or added feeding via a nasogastric or gastrostomy tube.
Continence
Even prior to pregnancy and birth, women with CF may worry about continence and pelvic floor difficulties. This may make women reluctant to maintain a productive cough and may lead to a deterioration in lung function. For women with CF who already have a low lung function or other concerns, such as nutrition or body weight changes, this can cause significant health complications.
Open communication with medical professions about continence or other concerns which may affect treatments should be addressed early and monitored. Some women have found that they have improved compliance and lung function or are able to catch any concerns early with this extra monitoring.
Considering a pregnancy
When planning to become pregnant, it is important to consider your health status and discuss this with your treatment team. After consultation, your treatment team may advise against pregnancy. Things that can influence their decision may include poor lung function, respiratory failure, pulmonary hypertension or heart disease, or if you have severe liver disease or the bacteria Burkholderia cepacia.
For women and their partners who have been advised to not proceed with pregnancy or who have made the decision to not become pregnant, this can be a very difficult and isolating experience. Some women may grieve the loss and their dreams of family. Your CF team or other support network may be able to provide you with helpful psychological or other emotional supports during this time.
Preparing for pregnancy
It’s important for women with CF to be active and maximise their fitness prior to and in the early stages of pregnancy, with the aim to maintain fitness as much as possible in later pregnancy.
Every woman with CF who would like to have a baby will have a different experience and story to tell. Some will become pregnant quickly, others will require fertility treatment, and there are those who may never be able to conceive. Some may be very unwell during pregnancy, while others will have improved lung function and a feeling of wellbeing.
In planning to start a family, it’s important to link in with your CF team at the very beginning. They will be able to advise you on what a pregnancy could mean for your health, and what lung function and weight they recommend for you to support a pregnancy.
Many young women with CF may talk to their treating team about their desire to become pregnant at a later stage, so they can work towards optimal health considerations to support a pregnancy if possible.
One important consideration would be the stability of your lung function. For instance, you may have lower lung function, but it is very stable. As well as adjusting your health for pregnancy, your CF team will also review all your CF medications to make sure they are safe for the baby.
Along with preparing your physical health for pregnancy, your mental health and social wellbeing are also very important. Having people in your life who can support you through your pregnancy and becoming a mother, can be practically and emotionally very helpful. Being able to call on family and friends for help if you’re feeling unwell gives you time to recover, and look after yourself and your baby.
Unplanned pregnancy
While it is great to work with your CF team when you are planning a pregnancy, life can sometimes not go as planned and like a lot of women, those with CF do have unplanned pregnancies. If this happens to you, the important thing is to speak to your CF team as soon as possible.
Lung transplant and pregnancy
There hasn’t been a lot of research conducted around lung transplant and pregnancy, and the research that is available, such as Pregnancy after lung and heart-lung transplantation; a French multicentre retrospective study of 39 pregnancies, is based on small numbers of women, because it is fairly rare for a woman who has had a lung transplant to become pregnant.
These small studies have indicated that pregnancy for women with CF who’ve had a lung transplant is high risk for both the mother and the baby. In about half of these pregnancies, the baby is born prematurely. This carries a number of risks for the baby, including breathing difficulties, heart problems and developmental delay, which vary depending on how early the baby is born. The main risk to the mother is rejection of the transplanted lungs.
If you’ve had a transplant, it is likely that your CF team will advise you against pregnancy, or at the very least, will recommend you wait for a minimum of two to three years before planning a pregnancy. To understand what the risks during pregnancy could mean for you, have a conversation with your transplant and CF teams before you start trying for a baby.
Comments from members on pregnancy
“I had no health issues at all while I was pregnant. No IVs, nothing. I did have slow weight gain, but it was sufficient.”
“My pregnancy was more challenging from the perspective of others opinions, more than from an actual health perspective.”
“My fitness and health improved when I was pregnant. I know this isn’t the case for everyone, but I was very lucky.”
Support during your pregnancy
Your CF Clinic team will support you through your pregnancy, helping you plan how to increase your kilojoule intake and maintain a healthy weight to support you and your baby.
Your team will also review your medication. The first trimester of pregnancy is critical for foetal development, and some medications can affect that development.
If breathlessness becomes a problem for you, your CF physiotherapist can help you recognise what is to be expected and what requires treatment. They may look at ways to increase your lung expansion by using different devices and positions.
Your CF physiotherapist will also see you frequently during pregnancy to help you develop continence management techniques, such as pelvic floor exercises, to reduce continence problems. They can help make sure your exercises are effective as your body grows and changes. This is particularly important before and after childbirth, so your muscles are as strong as possible.
A birth plan
As part of antenatal care, a birth plan is usually completed that encourages expectant mums to think about what type of birth she would prefer and her preferences for pain control. For many women with CF, the plan will be to have a vaginal delivery with the baby at full term. However, sometimes that plan will need to change to ensure the best outcome for both the mum and baby – and sometimes the baby may have its own plan! The best birth plan is the one that keeps mum and baby safe and healthy.
Pain relief
Managing pain in childbirth is important for all women, but it is even more so for women with cystic fibrosis, as pain and anxiety can cause fast and shallow breathing (hyperventilation). This can also make it harder to cough effectively during or between contractions, so you may need some assistance from your CF physiotherapist.
For some women with CF who experience this type of breathing during labour, the amount of oxygen getting into the bloodstream can drop, which will result in closer monitoring of the mum and baby, with the possibility of oxygen therapy or a change of birth plan. Pain relief and breathing techniques can help with hyperventilation.
An epidural may be suggested for some labouring women with CF, as it is very effective in pain control, and can significantly reduce the stress on your heart and lungs that intense pain can trigger.
Your CF team may also have advice on what pain relief is most appropriate for you. If you need a caesarean section, the team would usually prefer you to have spinal anaesthesia. However, this would always be decided according to your own circumstances.
”It's good to have a plan for when you get sick. Who are your support networks? How will you explain CF to your child? Learning to balance the need to care for yourself versus the need to care for your child.
Adult with CF
Comments from members on becoming a mum
“The hardest part of becoming a mum is getting others to understand how tired you can become. I struggled more keeping up with a newborn and my health than I did when I was pregnant.”
“Looking after a baby is hard work. I had to nap a lot to recoup my energy. ”
“Be open when you need help. If you need to rest or time out, let your loved ones know.”
“It’s good to have a plan for when you get sick. Who are your support networks? How will you explain CF to your child? Learning to balance the need to care for yourself versus the need to care for your child.”
Useful resources
There are multiple facebook groups in Australia and abroad which are for women with CF only. Members have told us they provide great information sharing on pregnancy with CF, modulators on pregnancy, health tips and general support.
