Pregnancy guidance
with mito
This event focused on guidance for pregnancy and mito. It was led by Professor Lisa Hui, a Professorial Fellow in Maternal Fetal Medicine at the Mercy Hospital for Women. The event was recorded on Monday, November 11, 2024. It is available to watch, listen to, or read about.
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We understand that this topic may bring up strong emotions. If you need support, please reach out to us at supportservices@mito.org.au or call our Helpline on 1300 977 180.
Listen to the audio
Read a summary of the event here
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Introduction and Disclaimer
- The Managing Mito webinar on pregnancy guidelines with mitochondrial disease (mito) is hosted by Abbey Mason, a Support Services Officer with the Mito Foundation, and features guest speaker Professor Lisa Hui, a Maternal Fetal Medicine Specialist and Professor Fellow at the Mercy Hospital for Women 00:06.
- The webinar includes a Q&A session through the chat, and attendees are encouraged to submit their questions, which will be addressed at the end of the presentation 00:39.
- A disclaimer is provided, stating that the information shared in the session is for general purposes only, and attendees are recommended to seek personalized advice from a professional in the field regarding their specific situation 00:52.
- The Mito Foundation acknowledges the Traditional Custodians of Country throughout Australia and pays respects to Elders past and present, as well as Aboriginal and Torres Strait Islander peoples 01:22.
- Guest Speaker Introduction
- The importance of the mito community is acknowledged, and a quote from community member Alice highlights the value of the community in supporting parents with mito 02:03.
- Professor Lisa Hui is introduced as the guest speaker, and she chairs the Informed Decision Making for Pregnancy and Parenthood Working Group with the Mito Hope Pilot Program 02:16.
- Professor Hui recently published a literature review with clinical guidance on antenatal care of women with mito and will be sharing her presentation during the webinar 02:43.
- Professor Hui introduces herself as a Maternal Fetal Medicine Specialist, an obstetrician with a special interest in pregnancies that require additional care, particularly those with medical conditions or suspected health conditions in the baby 03:21.
- She acknowledges the Traditional Owners of the land on which she lives and works, paying respects to the Wurundjeri people of the Kulin Nation and their Elders past and present 03:53.
Pregnancy and Parenthood Challenges
- Professor Hui emphasizes the importance of preparing for pregnancy, noting that about 50% of pregnancies are unplanned, and people may miss out on opportunities to optimize their health and get their pregnancy off to the best possible start 04:19.
- Pregnancy can have a significant impact on women’s health, particularly for those with mitochondrial conditions, affecting both the mother’s health and pregnancy outcomes 04:44.
- During pregnancy, the body undergoes various changes, such as increased heart rate and blood volume, lower blood pressure, deeper and faster breathing, and increased stress on the body 05:25.
- Labour and childbirth can be an additional stress on the body, especially for women with pre-existing medical conditions, requiring extra consideration 05:53.
- Parenthood is a long-term challenge that requires significant physical and emotional effort, often involving sleep deprivation, infant care, and managing a growing family 06:29.
- Normal symptoms of pregnancy include fatigue, shortness of breath, nausea, vomiting, heartburn, reflux, fluid retention, and changes in bowel habits and bladder function 07:24.
- Women with mitochondrial conditions may face additional challenges due to the physiological stress of pregnancy and its associated symptoms 09:11.
Pre-Pregnancy Preparation and Health Optimisation
- It is essential for women with mitochondrial conditions to be aware of these potential challenges and take steps to optimize their health before and during pregnancy 05:05.
- Pre-pregnancy tests and general health advice can help women prepare for the physical demands of pregnancy and parenthood 05:11.
Pregnancy Outcomes and Complications in Women with Mitochondrial Disorders
- A review of 24 studies on pregnancy outcomes for women with mitochondrial disorders from 2000 to 2023 found that most women coped well with pregnancy and had healthy babies, but many experienced symptoms such as worsening reflux, fatigue, muscle pain, and exercise intolerance 10:17.
- The studies included five questionnaire-based studies with 322 women and 19 individual case reports, which informed general recommendations for pre-pregnancy and pregnancy care 10:32.
- Common issues during pregnancy included nausea, vomiting, constipation, balance problems, memory problems, and headaches, making it difficult to determine the impact of mitochondrial disease 12:02.
- Severe or adverse outcomes, such as hospitalization due to weakness and fatigue, respiratory compromise, worsening heart function, epilepsy, pain, and metabolic issues, were reported in some cases 14:02.
- Women with mitochondrial disease had more common complications, including gestational diabetes, high blood pressure, pre-eclampsia, pre-term birth, and fetal growth issues 14:34.
- The risk of pre-term birth, caesarean, and stillbirth was higher for women who were very unwell, and multidisciplinary team management was crucial for their care 13:20.
- Most women with mitochondrial disease can have a vaginal birth, and having the disease is not a reason in itself to have a caesarean, although some severely debilitated women may require a caesarean 16:23.
- Pre-pregnancy function and multidisciplinary team management were significant influences on how women with mitochondrial disease coped during pregnancy and how well the baby did 13:32.
- Women with mitochondrial disease may consider having a caesarean for particular reasons if labour isn’t considered optimal, and it’s essential to avoid excessive fatigue and dehydration in labour, with options like epidural or spinal anaesthetic available if a caesarean is needed 16:41.
Infant Feeding and Family Planning
- Infant feeding choices are individualised to a woman’s particular circumstances, with options including breastfeeding, bottle feeding, expressing breast milk, or complementary feeding with formula, and lactation specialists are available to support women in their feeding choices 17:00.
- The Raising Children website is a helpful resource for information on all aspects of having children, and it’s Australian, government-supported 17:35.
- To prepare for having a family, it’s crucial to understand how mitochondrial disease affects you and what choices you have for starting a family, with a team of healthcare professionals involved, including Mito specialists, neurologists, endocrinologists, genetic counsellors, family doctors, obstetricians, allied health staff, and mental health professionals 17:58.
- Potential options for having children include natural conception with testing after birth or during pregnancy, IVF with egg donation, IVF with genetic testing of the embryo, and adoption 19:04.
Pre-Pregnancy Health Check-up and Recommendations
- Pre-pregnancy counselling with a general health check-up and an obstetrician with extra training in high-risk pregnancy is recommended, along with reviewing medications, updating vaccinations, starting vitamin supplementation, and optimising lifestyle 20:28.
- Medication review is particularly important for women with mitochondrial disease, as many may be on treatment for diabetes, epilepsy, or heart conditions, and it’s essential not to stop any medications without checking with a doctor 21:11.
- Getting good control of seizures, blood pressure, and blood sugar before conception is ideal, as uncontrolled conditions can affect early development of the baby 22:01.
- Vaccination is crucial in preventing diseases during pregnancy, and it’s recommended that all women are up to date with their vaccinations before pregnancy, including rubella, COVID-19, influenza, chickenpox, and hepatitis B 22:15.
- The COVID-19 vaccine is safe to take before or during pregnancy, and pregnant women are more prone to becoming unwell if they catch COVID-19, which can increase the risk of pre-term birth and stillbirth 22:43.
- During pregnancy, recommended vaccinations include a whooping cough booster to protect the newborn baby, flu vaccination during the flu season, and COVID-19 booster if due during pregnancy 23:20.
- The respiratory syncytial virus (RSV) vaccine is also recommended in pregnancy, and the website “Sharing Knowledge About Immunisation” (SKAI) is a good source of information on immunisation 24:21.
- Cytomegalovirus (CMV) is a virus that can cause serious health effects in babies if a woman catches it in the first trimester of pregnancy, and prevention measures include proper hand hygiene, avoiding contact with infected saliva, and not sharing food or cutlery with toddlers 24:47.
- Syphilis is a sexually transmitted disease that can cause problems for a baby’s development, and all women are screened for syphilis during pregnancy, with early treatment with penicillin preventing complications 26:19.
- Foodborne illnesses like listeria and toxoplasmosis can be reduced by healthy eating and avoiding ready-to-eat chilled food, soft cheeses, raw eggs, and undercooked meat 26:30.
- A healthy diet rich in fruit, vegetables, high-fibre complex carbohydrates, dairy food, and good quality sources of protein is essential in pregnancy, and vitamin supplementation, including folic acid, is recommended 27:04.
- High-dose folic acid is recommended for women on anti-epileptic medication, with diabetes, or who have had a prior pregnancy where the child was affected by a spinal cord defect or spina bifida 27:45.
- Folic acid supplements are available over the counter and should be taken at least one month before conception to reduce the risk of spina bifida, continuing through pregnancy 28:04.
- Lifestyle factors such as smoking, alcohol, vaping, and other recreational drugs have adverse impacts on a baby’s development and growth, and it’s essential to get support to stop or reduce intake of these substances 28:22.
- There is no safe level of alcohol consumption during pregnancy, and abstaining from the time of conception is recommended 28:49.
- Regular exercise and maintaining a healthy weight are crucial for maintaining function during pregnancy and optimizing outcomes, reducing the risk of complications 28:56.
Genetic Screening and Antenatal Care
- Genetic conditions such as cystic fibrosis, spinal muscular atrophy, and fragile X syndrome can be tested for before conception, and these tests are funded by Medicare 29:35.
- It’s preferable to be screened for these conditions before pregnancy to have more options for having a family and a child not affected by one of these conditions 30:14.
- In Australia, different models of antenatal care are available, including public antenatal care, midwifery-led care, GP shared care, and private obstetric care 30:46.
- Women with a mitochondrial disorder are recommended to be looked after by a multidisciplinary team, usually in a public hospital setting in a Maternal Fetal Medicine unit 31:35.
Support and Resources for Parents with Mito
- The Australian Mito Foundation website has resources available for partners, who are often important but overlooked in these conversations 32:15.
- It’s essential for new parents with Mito to use their support network, prioritize self-care, and remember that they are not alone in their journey 32:51.
- Information on mitochondrial donation as an option for starting a family is available, but the clinical trial is unlikely to open for recruitment until late 2025 33:29.
- For those with a pre-pregnancy consultation, a literature review and suggested guidance for preconception and pregnancy care can be downloaded from the Australian and New Zealand Journal of Obstetrics and Gynaecology, an open-access paper freely available to the public 34:08.
Specializ\sed Care and Management during Pregnancy
- The frequency of visits to a Mito specialist during pregnancy depends on individual circumstances, such as the stability of the condition and the need for medication adjustments, and should be discussed during early visits or a pre-pregnancy visit 35:48.
- Obstetric physicians, general physicians with a special interest in pregnancy and medical conditions, may take on some roles of the Mito specialist and provide input on blood pressure control, renal function, and diabetes management 36:38.
- For women with stable blood pressure, it is possible to keep it stable during pregnancy, but medication may need to be altered, and in some cases, hospitalization may be required if pre-eclampsia develops 37:12.
- Supplements may be considered to help with fatigue and muscle weakness, but the specific supplements and their effectiveness depend on individual circumstances and should be discussed with a healthcare professional 38:02.
Managing Fatigue and Accessing Specialised Care
- Managing fatigue in individuals with mitochondrial disease (Mito) during pregnancy involves ensuring all factors, such as iron levels, are optimized, as there is no magic cure for the fatigue, and vitamin supplements may not have a huge impact on the level of fatigue 38:27.
- Individuals with Mito are generally considered high-risk pregnancies, but this does not necessarily mean they will need a lot of intervention or end up with a caesarean or in hospital; it means having the right experts around to look after them if things don’t go as planned 40:06.
- Women with Mito living in regional areas can access specialized care in a tertiary maternity hospital, which might require traveling to the city for one or two visits, or be done by telehealth in conjunction with their local doctor 40:31.
- A shared care plan can be implemented for women with high-risk pregnancies living in regional areas, where they see specialists early in pregnancy, but most routine visits and check-ups are done locally, with visits to the tertiary hospital several times during the pregnancy 40:56.
- The type of Mito someone has can affect the level of care needed, and if it’s limited to one organ and doesn’t affect the heart, lungs, or blood sugar control as much, it may not need to follow the high-risk model 41:42.
- It’s essential to get specialist advice early in pregnancy to know what lies ahead and to discuss any concerns or questions, such as those related to anaesthetics 41:58.
- Discussions about anaesthetics can take place before or during pregnancy, and it’s recommended to have a plan in place in case of an emergency caesarean section or the need for pain relief in labor 42:31.
- A consult with an anaesthetist is usually arranged during pregnancy to get advice on suitable anaesthetics and to have a plan in place for any potential complications 43:03.
Advocacy, Self-Care, and Support for Women with Mito
- Women with mitochondrial disease (Mito) often face unique challenges during pregnancy and childbirth, and it’s essential for them to have a plan in place, but also be flexible and prepared for things not going as expected 43:39.
- To advocate for themselves, women with Mito should consider having a support person present during antenatal visits and labour, who can communicate with the care team and help express their wishes and preferences 45:24.
- It’s crucial for women with Mito to prioritize their own health and well-being during pregnancy, childbirth, and parenthood, and not feel pressured by societal expectations or apologize for their choices 46:20.
- Women with Mito should feel supported in their decisions regarding childbirth, whether they choose a vaginal birth or a caesarean section, and should prioritize their own health and safety above all else 47:05.
- Breastfeeding and infant care can be challenging for women with Mito, and they should not feel pressured to compromise their own health for the sake of their baby, but instead prioritize their own well-being and seek support when needed 47:14.
- A case report highlighted the importance of women with Mito prioritizing their own health, as a woman with respiratory compromise suffered from poor health after having a baby due to neglecting her own needs 47:37.
- The importance of having a support system, or “village,” to help care for a new baby and prioritize the mother’s health and well-being was emphasized 48:20.
- The Mito Community Summit and online webinars are available resources for women with Mito, providing guidance and support for pregnancy and building a family 48:48.
Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information's accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.
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During the event, there wasn’t time to answer every question. You can find the additional Q&A that was shared afterwards at the bottom of this page.
