ADPKD and pregnancy
This information sheet is about pregnancy and birth in women with autosomal dominant polycystic kidney disease (ADPKD). It’s intended as a general guide for women and their partners about planning for pregnancy, what to expect during pregnancy, and what to do if you’re already pregnant.
Before you become pregnant
Can women with ADPKD get pregnant?
Your kidney function greatly affects your ability to conceive and have a successful pregnancy. If your kidney function is normal, your fertility is likely to be the same as if you didn’t have ADPKD. If your kidney function is very low, the levels of reproductive hormones in your body may be considerably reduced, meaning it could be harder to conceive (get pregnant).
Miscarriage early on in pregnancy (before 12 weeks) occurs in 2 in 10 women (20%) in the general population. One study has suggested that the risk of miscarriage in women with ADPKD who are on medication to treat high blood pressure increases slightly to 3 in 10 (30%).
If you have difficulties conceiving, ask your GP or kidney doctor to refer you to a fertility specialist.
Can men with ADPKD father children?
Men with ADPKD usually have normal fertility, unless they have low kidney function. Men with severe ADPKD who have had a transplant are usually fertile soon after transplantation. ADPKD can cause cysts in the reproductive system, but it’s uncommon for this to affect fertility. If you would like advice on your fertility, speak with your GP or kidney doctor.
What is the risk of my baby inheriting ADPKD?
If you or your partner have ADPKD, there is a 1 in 2 (50%) chance of your baby also inheriting a faulty gene and developing ADPKD during their life. You can find out more about how ADPKD is inherited in our information sheet ‘Genetic counselling and genetic testing in ADPKD’.
To discuss the chance of your baby having ADPKD, ask your doctor to refer you to a genetics counsellor. You might also want to ask about the possibility of having specialist in vitro fertilization (IVF) to select an embryo without ADPKD (see section on IVF).
Does ADPKD affect a pregnancy?
Most women with ADPKD have safe pregnancies and healthy babies. If your kidney function is normal or only mildly impaired, you’re very likely to have a successful pregnancy. The risk of complications in pregnancy increases as kidney function declines, but everyone is different.
A doctor specializing in kidney disease (a nephrologist) or pregnancy (an obstetrician) can advise you on pregnancy risks based on your kidney function.
A recent study of women with reduced kidney function who had reached 20 weeks’ pregnancy found that nearly all (98%) carried the baby through to successful birth. Women with a kidney transplant were just as likely to have a successful pregnancy.
If your kidney function is reduced, you’ll have a greater chance of these complications during pregnancy:
- pre-eclampsia: a condition that can be dangerous for both mother and baby
- the fetus growing more slowly than usual or being born a low weight
- your baby being born early - about 7 in every 10 women with moderate or severe kidney disease have a pre-term birth (before 37 weeks)
- your baby needing care in a special unit (a neonatal unit) after birth
- a higher chance of needing a caesarean delivery (operation to deliver the baby).
- Pre-implantation genetic diagnosis (PGD)
The chance of having a pre-term birth is increased if you have high blood pressure before pregnancy, especially if it’s been a long-term problem.
Women with kidney disease are monitored more closely during pregnancy to pick up any problems and treat them promptly. Later in this fact sheet, we explain the extra care you will receive.
It is recommended that you use a reliable form of contraception until you are ready to start trying for a baby. Contraceptive pills that contain the hormone oestrogen may not be suitable for some women with ADPKD as they can increase blood pressure. Your GP will be able to recommend suitable contraceptives for you. These usually include the progesterone-only pill, a progesterone implant placed under the skin, or a progesterone intra-uterine device (coil).
If you need to take emergency contraception, the progesterone-only version is usually safe for women with kidney disease. Remember to let the pharmacist or GP know you have ADPKD.
If pregnancy is not possible for you, or you feel it is too risky, alternatives ways to become a parent include surrogacy (another woman carrying your and your partner’s baby) or adoption.
If you have had a transplant, you will probably be recommended to wait a year before trying for a baby. Use contraception in the meantime.
Planning a pregnancy
If you are thinking about becoming pregnant and have ADPKD, it is best to talk to your GP or kidney doctor before trying to conceive. You should be offered pregnancy planning with a specialist team including a doctor specializing in pregnancy (a consultant obstetrician), a doctor specializing in kidney disease (a nephrologist) or other expert doctor. This is so that you understand before you become pregnant how your kidneys will affect your pregnancy and how being pregnant may affect your kidneys.
Pregnancy planning is important to make sure, where possible, that you are not taking any medication that might affect the developing baby. It also gives the chance to make sure your kidney disease and blood pressure are being managed as best as possible, ready for pregnancy. Any other medical problems that might change with pregnancy are monitored too.
All women planning to become pregnant (including those with ADPKD) are recommended to take folic acid every day for 3 months before trying to conceive and for the first 12 weeks of pregnancy. This helps to reduce the risk of problems affecting the tissue in the embryo that forms the baby’s spine and nervous system. These problems are known as neural tube defects and include spina bifida — a condition in which the spine doesn’t form properly. Some specialists may advise you to take a higher dose of folic acid.
If you are overweight, it is recommended that you lose weight before trying to become pregnant. This will improve your chances of conceiving and of an uncomplicated pregnancy.
Women on haemodialysis need long and frequent dialysis before and during pregnancy. Those using peritoneal dialysis are recommended to switch to haemodialysis. So, if you are on dialysis, you may want to consider having a kidney transplant before getting pregnant.
If you need help getting pregnant in the form of IVF, you should be offered counselling first. Some women having IVF have 2 embryos transferred into the womb at a time. This increases the chance of pregnancy, but also increases the risk of having twins. Because carrying more than one baby increases risks for women with kidney disease, only one embryo will be transferred to your womb per IVF attempt.
If you’re particularly concerned that your future baby could have ADPKD, you may wish to talk to your GP or kidney specialist about being referred to a specialist centre for genetic counselling. If either parent-to-be has ADPKD, it may be possible to undergo specialized IVF with testing of the embryos beforehand to select one unaffected by ADPKD. This is called pre-implantation genetic diagnosis (PGD). An unaffected embryo is transferred into the womb.
It is essential that the parent-to-be with ADPKD has already had genetic testing to identify the gene causing their ADPKD so this can be searched for in the embryos’ DNA.
PGD is only offered in a few centres. Funding may be available through the NHS under certain circumstances. For more information, ask your genetics centre and see the Human Fertilisation and Embryology Authority website.
You’ll also find a link to a directory of all the UK genetics centres at the end of this guide.
Changes of medication during pregnancy
Some common drugs taken by people affected by ADPKD are unsafe during pregnancy because they may affect the developing baby. The most common drugs that should be changed if you become pregnant are listed in the table.
If you are taking any medication and wish to become pregnant, it is important that you discuss this with your doctor. You may need to plan to switch to an alternative medication. Remember that it is inadvisable to stop taking any medication before checking with your doctor because this may put you or your baby at risk of complications. In particular, good blood pressure control is important for a safe and successful pregnancy.
When you become pregnant, your doctor may suggest that you take aspirin at a low dose (75—150 mg). Aspirin is safe to take in pregnancy and reduces the risk of pre-eclampsia. This condition can be dangerous to both mother and baby (see the section on blood pressure below).
You might also be recommended to take addition medications or supplements, for example if you have low iron or vitamin D levels, have had a urinary tract infection, or have a high level of protein in your urine.
Medications that should be changed or avoided during pregnancy
Medications to reduce cyst growth
Medications to control blood pressure
Medications to treat an overactive parathyroid gland
Medications used to treat high phosphate levels
Immunosuppressants (used after kidney transplant)
Telling your GP and kidney doctor that you are pregnant
Let your GP know when you are pregnant — they will refer you to appropriate maternity services. Alternatively, you can contact a midwife directly. If possible, inform your kidney doctor straight away too.
If you’re taking any of the medications listed earlier, see your GP or kidney doctor as soon as possible. Under their medical supervision, you can stop taking those medications safely and switch to an alternative.
Care during pregnancy
Like all pregnant women, you are likely to see a midwife at your first antenatal (meaning ‘before birth’) hospital appointment. In this visit, your personal details and medical history are recorded. Your care from then on is likely to be with a specialist team including a pregnancy specialist (consultant obstetrician) and midwives with experience of looking after women with medical problems.
Later in your pregnancy, you may have more hospital visits than in standard antenatal care, to monitor you and your baby more closely.
You will be offered the same ultrasound scans and blood tests as other women in the UK. If there are concerns about how your baby is developing, or about your blood pressure, you may also be offered extra scans later in pregnancy to assess your baby’s growth.
Maximizing the chance of a successful pregnancy
Good blood pressure control is very important for successful pregnancies. To achieve this, it is recommended that you:
- continue to take the medication recommended by your doctor during your pregnancy (if listed in the table, please see your doctor)
- avoid excessive weight gain before or during pregnancy
- exercise regularly, unless advised not to by your doctor or midwife
- attend all your appointments as scheduled.
You should contact your midwife, kidney doctor, obstetrician or GP if you are concerned about anything during your pregnancy.
Blood pressure control during pregnancy
Women with ADPKD are more likely to develop high blood pressure during pregnancy (particularly the final few months) than women who don’t have ADPKD. If this happens you may be advised to start taking medication or increase your current medication to control your blood pressure. Remember, any changes to your medication should only be made under close medical supervision. Medications to control blood pressure that are commonly recommended for women during pregnancy are labetalol, nifedipine and methyldopa.
Women with ADPKD are also more likely to develop pre-eclampsia. This is a condition in which women have protein in their urine, fluid retention and high blood pressure. Pre-eclampsia is a serious condition for both the mother and the baby. Approximately 1 in 10 women with ADPKD with normal or mildly reduced kidney function develop pre-eclampsia. You could be more likely to get pre-eclampsia if you already have blood pressure problems or poorer kidney function. To reduce your risk of developing pre-eclampsia, your doctor may suggest that you take aspirin at a low dose (75—150 mg) from about 12 weeks onwards.
The most common complications of pre-eclampsia are poor growth of the baby and early delivery. The condition can also cause seizures in the mother and can make existing kidney problems worse, although usually only temporarily. Rarely, pre-eclampsia causes the mother to have a stroke or the baby to be stillborn.
Some of the earlier signs of pre-eclampsia to look out for are:
- visual disturbances, such as blurring or flashing lights
- sudden swelling of the hands, feet or face
- a severe headache that does not get better with standard painkillers
- suddenly vomiting or stomach pain
- severe pain just below the ribs
- seizures (less common).
If you experience any of these symptoms, seek immediate advice from a healthcare professional.
If your midwife or doctor suspects you have pre-eclampsia, you are likely to be admitted to hospital for monitoring. Once your pre-eclampsia has been diagnosed, you may be asked to stay in hospital until you give birth.
Although your blood pressure will be controlled with medication, the only treatment for pre-eclampsia is delivery of the baby. If your baby is going to be born prematurely (i.e., before 37 weeks’ gestation) you may be offered a course of steroids before the birth to help your baby’s lungs to develop.
Your obstetrician will discuss with you the timing of the birth and whether it is advisable to be induced (have treatment to start your labour) or have a caesarean birth.
Problems with the placenta
High blood pressure or pre-eclampsia may mean that the placenta does not work as effectively; this can prevent the baby from growing properly. This is more common in women with blood pressure problems, and with more severe kidney disease.
If your obstetrician is concerned about your baby’s growth or the blood supply to the baby, they may discuss with you whether it would be best for the baby to be born earlier than its due date.
Very occasionally, the placenta may detach before the birth of the baby. This is very serious. If this happens, you’ll usually feel severe and constant abdominal pain and may have some vaginal bleeding. You will need urgent medical attention and your baby will need to be delivered.
Checking kidney function during pregnancy
During pregnancy, your kidneys need to work up to 50% more to get rid of waste. Usually, your kidney function is calculated using estimated glomerular filtration rate (eGFR). This is a measurement of how much waste fluid (in millilitres) your kidneys can filter from the blood in 1 minute. However, eGFR is inaccurate during pregnancy. Instead, your blood creatinine levels will be measured throughout pregnancy to check that your kidney function is not being affected. These levels tend to fall in early pregnancy and rise again towards your due date.
The amount of protein in your urine will also be measured during your pregnancy. If it is especially high this can increase the chance of you having a blood clot. Your doctor might recommend that you take medication to reduce your risk of having a blood clot.
You’re more prone to urinary tract infections during pregnancy, and they are more likely to affect your kidneys. If you develop symptoms of a bladder or kidney infection (pain, stinging or burning while passing urine) seek medical advice. Your doctor and midwife will regularly check your urine for signs of infection. If you develop a urinary tract infection, you’ll need to take antibiotics to treat it. If your doctor thinks there is a risk of you getting another urinary tract infection during pregnancy, they might recommend you take further antibiotics to reduce the chance of this happening.
The growth of your kidney cysts is not likely to be affected by pregnancy. There will always be enough space for your baby to grow even if your kidneys are very big.
Liver cysts and pregnancy
Some studies have found that pregnancy hormones may cause an increase in the growth of liver cysts (but not kidney cysts). However other studies did not find this, so it is not clear whether pregnancy affects liver cysts. Liver cysts may cause abdominal discomfort or pain, but they are no risk to the baby and do not affect your liver function.
Planning the birth
You will be supported in your decision to give birth in the location of your choice. Most healthcare professionals will recommend that you have your baby in hospital. This is because of your ADPKD and the possibility of developing blood pressure problems or pre-eclampsia during or after delivery.
You may be offered monitoring of your baby during labour, which is likely to be ‘continuous fetal monitoring’ or cardiotocography (CTG). This means the midwives and doctors will be able to listen to your baby’s heart rate throughout your labour. This monitoring is advised for women with any kidney impairment or high blood pressure because there is a slightly higher chance that the placenta won’t work as well as it should. Continuous monitoring means any changes in your baby’s heart rate during labour are picked up and can be closely monitored and acted upon by the midwives and doctors.
If you have had good kidney function and normal blood pressure during pregnancy, midwives will look after you during your labour. However, your midwife will continue to check your blood pressure and keep a close eye on your baby’s heart rate. If you have had complications during your pregnancy, you may be advised to have your baby in a specialist centre, so you and your baby can be carefully monitored by specialists.
Having ADPKD does not necessarily mean you will need a caesarean delivery. Your doctors may advise you that your baby needs to be delivered a little early (usually 1 to 2 weeks early). They will discuss the appropriate method of delivery with you.
Pain relief during birth
You will be able to have all forms of pain relief in labour including:
- transcutaneous electrical nerve stimulation (TENS machine), which uses a mild electric current to reduce pain signals
- strong pain relief injections (pethidine and diamorphine)
- gas and air (Entonox®)
- an epidural, which is an injection of anaesthetic (numbing medicine) into the spine.
If your kidney function is more severely reduced, the dose of pain-relieving injections may need to be reduced to minimize side effects.
After delivery, you should avoid non-steroidal anti-inflammatory drugs (NSAIDS), such as diclofenac and ibuprofen if you have reduced kidney function. Alternative painkillers, such as paracetamol (which can be used safely if you are breastfeeding) or codeine (which shouldn’t be used if you are breastfeeding), can be prescribed for you instead.
After your baby is born
Check with your GP or kidney specialist whether it is safe for your baby to breastfeed if you are taking any medication. If needed, it may be possible to adjust your medication so that you can breastfeed.
Long-term effects of the pregnancy on the kidneys
If your kidney function is quite good, your pregnancy is unlikely to cause damage to your kidneys. During pregnancy, your kidney function will be very closely monitored. It will also be checked after your baby is born. A temporary fall in kidney function may occur in some women until the baby is born.
This is usually only a small change: you are unlikely to need dialysis during your pregnancy unless you were already receiving it.
If you have moderate kidney disease, having a baby can add roughly 2 years’ worth of damage to your kidneys. The amount of damage is greater for women with long-term high blood pressure than those with normal blood pressure.
If you have severe kidney disease,If your kidney disease is severe, pregnancy having a baby may cause a permanent reduction in kidney functioncan cause a noticeable drop in your kidney function. You may need dialysis to keep you and your baby well. You may need to start dialysis or have a kidney transplant roughly 5 years sooner than if you hadn’t had a child.
If you develop high blood pressure during pregnancy, you are more likely to go on to have blood pressure problems after delivery and in later life. This can be controlled with medication prescribed by your GP or kidney doctor.
If you are concerned about your health affecting your ability to be a parent, discuss this with your GP or kidney doctor. They will be able to explain possible symptoms you may experience in the future.
How can I find out whether my baby has ADPKD?
If either you or your partner has ADPKD, the risk of your baby inheriting a faulty gene and having ADPKD is 1 in 2 (50%). Occasionally, abnormalities that show a baby might have ADPKD are seen on antenatal scans. More usually, people with ADPKD develop cysts later in life, either in their teens or adulthood.
You can find out more about ADPKD in children, including tests for the ADPKD gene, in our fact sheet 'ADPKD in children'.
More information from the PKD Charity
Useful information from others
- The Human Fertilisation and Embryology Authority (HFEA) has useful information on fertility and fertility treatments, including pre-implantation genetic diagnosis (PGD)
- Guy’s and St Thomas’ Centre for Preimplantation Genetic Diagnosis explains how PGD works, including preparation, risks and stages of PGD
- NHS Choices has general information on many health topics, including pregnancy, high blood pressure (hypertension) and pre-eclampsia
- Action on Pre-eclampsia provides support and information for women with pre-eclampsia and their families (01386 761848; )
- Tommy’s has information on pre-term (premature) labour and birth.
Dr Kate Bramham, Consultant Nephrologist and Katherine Clark, Renal Midwife, King's College London discuss the journey from:
- Planning a pregnancy, fertility issues, assisted conception and pre-implantation genetic testing through to pregnancy care including medications and some extra testing and monitoring you should expect
- Birth planning and the likely outcomes for the mother and the baby both for their kidneys and the pregnancy
- What to expect in the postnatal period