• Most women with ADPKD have successful pregnancies. 
• If you have ADPKD, your chance of having some problems during pregnancy may be higher than other women.  
• The less well your kidneys work, the greater the chance of problems.  
• Problems can include high blood pressure, pre-eclampsia (where your blood pressure gets dangerously high) and urinary tract infections. 
• Treatments are available for these problems. 
• If your kidneys don’t work well, your baby is more likely to grow slowly. They could be born a low weight, be born early, and need care in a special unit. 
• If you want, you could have your developing baby (fetus) tested for ADPKD early in pregnancy. 
• As well as the usual care during pregnancy (antenatal care), you may have extra check-ups, scans and tests.  
• This means your midwife and doctors can spot any problems early and give you and your baby the care you need.  
• The amount that pregnancy could affect your kidneys depends, in part, on how well your kidneys work currently. 

Let your GP know when you’re pregnant. They’ll refer you to services for pregnant women (antenatal services). You can contact the antenatal service directly if you prefer.  

Also tell your kidney doctor that you’re pregnant. 

If you’re taking any medicines, see your GP or kidney doctor as soon as possible. They’ll make any changes to your medicines that are needed.  

If you have ADPKD, your chance of having some problems during pregnancy may be higher than other women. The worse your kidneys work, the greater the chance of problems. We explain some of these problems below. 

Some problems during pregnancy could affect your health or your baby’s. However, most problems can be managed with treatment and careful monitoring.  

Most women with ADPKD have successful pregnancies. This includes women with ADPKD who have had a kidney transplant. 

Your pregnancy care team (antenatal team) will monitor you carefully throughout your pregnancy. This means they can pick up any problems quickly and get you the right treatment.  

Loss of a pregnancy before week 23 is called miscarriage. Miscarriage is common in the UK. It happens in about 15 out of every 100 pregnancies in the general population. 

We are not sure whether having ADPKD affects your chance of having a miscarriage.  

Studies have shown that women with chronic kidney disease have a higher risk of miscarriage. However, many women with ADPKD at childbearing age have kidneys that work quite well. So, the results of studies in chronic kidney disease might not be relevant to all women with ADPKD.   

You can learn more about miscarriage on the Tommy’s website - Tommy’s is a charity that provides information on miscarriage and pregnancy.  

If you have ADPKD, you’re more likely to get blood pressure problems during your pregnancy than other women.  

This is why your blood pressure should be monitored during pregnancy. 

• If you already have high blood pressure, this could worsen during pregnancy. 

• If you don’t have high blood pressure, you could develop it during pregnancy (this is called gestational hypertension). 

• You could get a problem called pre-eclampsia, where your blood pressure gets very high. This can be dangerous for you and your baby. 

You’re more likely to get pre-eclampsia if your kidneys don’t work well. 

Most women with high blood pressure and pre-eclampsia have successful pregnancies. However, these conditions need careful management to keep you and your baby safe.  

Very high blood pressure caused by pre-eclampsia usually reduces within days of birth. 

Women with ADPKD are more likely to get urinary tract infections while pregnant than other women. These infections sometimes travel to the kidneys.  

If you get an infection, you’ll need antibiotics to treat it. 

If your kidneys don’t work well (low kidney function), your baby is more likely to: 

• grow slowly or be born a low weight  

• be born early (premature birth)  

• need care in a special unit (a neonatal unit) after birth 

A recent study looked at over 1600 pregnant women with ADPKD in the UK. These women were not on dialysis, had not had a transplant, and most had near normal kidney function. Fewer than 2 in every 10 women (17%) had a premature baby (birth before 37 weeks). (A full-length pregnancy is about 40 weeks.) 

A different study looked at pregnant women with ADPKD who had low or very low kidney function. About 7 in every 10 women (70%) had a premature baby (birth before 37 weeks). The women with high blood pressure were most likely to have a premature baby.  

Premature babies often need special care in a neonatal unit. You can find out more about specialist neonatal care on the NHS website. 

Some medicines are unsafe to use during pregnancy. They could harm your growing baby in the womb.15 We list some of these medicines in the table below.  

Ask your doctor to review your medicines before you get pregnant. If you’re already pregnant, ask for a review right away.  

Never stop taking medicines without talking to a doctor first as this could put you or your baby at risk.  

You might need to swap to a different medicine, rather than stopping treatment. For example, women taking medicine for high blood pressure usually swap to a different medicine during pregnancy. This ensures that their blood pressure is still controlled, which is important for pregnancy.  

Care for pregnant women up until birth is called antenatal care. 

You’re likely to see a midwife at your first appointment at the antenatal clinic.  

The midwife will:  

• collect the information from you that the service needs to plan your care 

• offer you a pregnancy check-up  

• explain what care you’ll have until birth 

Tell the midwife about your ADPKD so they can organize the right care team for you. 

Your care for the rest of your pregnancy is likely to be with a specialist team including: 

• a pregnancy doctor (obstetrician) 

• midwives experienced in looking after women with medical conditions 

• a kidney doctor (nephrologist)  

Later in your pregnancy, you may have more antenatal appointments than standard. These are to monitor you and your baby. You might also be offered extra scans, depending how your pregnancy is going. 

Someone is always on hand at the antenatal service should you have any concerns during pregnancy. 

If you or your partner have ADPKD, there’s a 1 in 2 (50%) chance of your baby having ADPKD. This risk is the same for each child you have. 

Testing for ADPKD before pregnancy is called pre-implantation genetic testing. We explain it on our web page on planning a pregnancy.  

You can also have your developing baby (fetus) tested for ADPKD in the womb. This is called chorionic villus sampling; see our page on planning a pregnancy for more inforamtion. It’s done at weeks 11–14 of pregnancy.  

To do the test, your pregnancy doctor will take a sample of cells from the placenta. This is usually done by putting a needle through your abdomen (tummy). 

There’s a small risk of the test leading to miscarriage. This happens in fewer than 1 in every 200 women.  

Doctors only recommend chorionic villus sampling when the results would help you decide whether to end a pregnancy.  

See the NHS website for more on: 

• chorionic villus sampling  

• ending a pregnancy when a baby has a serious condition 

 Our helpline is available on 0300 111 1234, Facebook Messenger and email ([email protected]) for emotional support. 

The charity Antenatal Results and Choices has a helpline for people considering the results of these tests. Call 0207 713 7486 or text 07908 683004. 

You should have extra tests during pregnancy because you have ADPKD.  

These may include: 

• frequent checks of your blood pressure (your doctor may suggest doing checks at home) 

• blood tests to check how well your kidneys work (your kidney function) 

• urine tests to check protein levels in your urine 

• urine tests to check for urinary tract infections 

• blood tests for pre-eclampsia  

Go to all your check-ups. Your midwife and doctors can then spot any problems early and give you and your baby the care you need.  

The usual measure of kidney function (estimated glomerular filtration rate or eGFR) is not used during pregnancy. eGFR is not accurate in pregnant women. Your kidney doctor will measure your creatinine levels instead.  

Control of blood pressure is important during pregnancy. It reduces your chance of getting pre-eclampsia and so keeps you and your baby safer. 

Women with ADPKD are more likely to have high blood pressure during pregnancy than other women. It’s most likely to happen in the last few months of pregnancy. 

Your antenatal team will measure your blood pressure often. They may suggest you measure it at home too. 

If your blood pressure is high, medicines can help. Examples of ones used during pregnancy are labetalol, nifedipine, methyldopa, clonidine and oxprenolol. Your doctor will talk you through the best options. 

Staying a healthy weight, exercising and eating healthy food are also good for blood pressure.

Pre-eclampsia can occur in the last few months of pregnancy or after birth. It causes a sudden rise in blood pressure. Most women with pre-eclampsia don’t get serious problems, but a few do. It can affect the growth of your baby. 

Women with ADPKD are more likely to get pre-eclampsia than other women: 

1. Of 100 pregnant women in the general population, up to 5 will get pre-eclampsia  

1. Of 100 pregnant women with ADPKD, about 9 will get pre-eclampsia 

Your risk of pre-eclampsia may be higher if your kidneys don’t work well or your blood pressure is high. 

Your antenatal team may suggest that you take aspirin at a low dose (75–150 mg) from week 12 to week 36. This reduces your risk of pre-eclampsia. 

They may also offer you blood tests for pre-eclampsia.  

If you get pre-eclampsia, you’ll need extra monitoring and care in hospital. The main treatments for pre-eclampsia are to manage your blood pressure safely and to plan the birth for the best time.  

Doctors may recommend you give birth a few weeks early. The timings depend on when pre-eclampsia occurs. They’ll organize the care you’ll need for this.  

Very high blood pressure caused by pre-eclampsia usually reduces within days of giving birth. 

Learn more about pre-eclampsia on the Tommy’s website. 

If you have too few red blood cells (anaemia) during pregnancy, you might need iron injections or an erythropoietin stimulating agent (EPO). These are safe to use during pregnancy.  

If your levels of vitamin D are low, you may need vitamin D supplements. 

Your antenatal team will help you to plan for the birth. They’ll make sure any extra care needed for you and your baby is in place. 

See our web page on giving birth for more information. 

For information, practical advice and emotional support from people with experience of ADPKD, ring our confidential PKD Helpline 0300 111 1234. We’re open 9:30am to 5:00pm, Monday to Friday, except bank holidays. 

You can connect with other people with ADPKD via our Facebook group or PKD support groups. 

The charities Tommy’s and the National Childbirth Trust (NCT) also offer advice on pregnancy, birth, miscarriage, caring for babies, and more.  

A private doula can also provide practical advice and emotional support. Doulas are not medically trained but have experience of how to help people through pregnancy, birth and afterwards. Find out more on the Tommy’s website. 

Pregnancy can cause some damage to your kidneys. 

If your kidney function is medium (chronic kidney disease stage 3), having a baby could slightly affect your kidneys. The damage is about the same as ADPKD would usually cause over 2 years. 

If your kidney function is poor (chronic kidney disease stage 4 or 5), having a baby could affect your kidneys quite a bit. The damage is about the same as ADPKD would usually cause over 5 years. 

If you get high blood pressure during pregnancy, your kidneys are more likely to get some damage. 

Your kidney doctor can explain: 

• how pregnancy might affect your kidney health 

• how you can reduce risks 

• signs of kidney problems to look out for 

• treatments to help  

Many women with ADPKD have cysts in their liver. This is known as polycystic liver disease (PLD).  

Pregnancy can increase the growth of liver cysts. However, experts think pregnancy doesn’t increase your chance of having serious problems from PLD. There’s not been much research on this, so we can’t be sure.  

Having ADPKD won’t stop you being a good parent.  

You might need more support with childcare if you’re unwell or having treatment.   

Ask your kidney doctor to explain how your ADPKD may affect your health as you get older. 

Chat with your partner, family and friends about any worries. Having their support and putting plans in place can be reassuring.  

You may find it helpful to talk to other parents with ADPKD. You can connect with them through our Facebook group or support groups.More information from the PKD Charity 

• Planning a pregnancy if you have ADPKD 

• Giving birth if you have ADPKD 

• Genetic testing and counselling in ADPKD 

• Progression (worsening kidney function) 

• High blood pressure 

• Urinary tract infections 

• Support 

• Tommy’s (a pregnancy and baby charity) has lots of information on pregnancy as well as loss of a baby. 

• The National Childbirth Trust has information pregnancy. 

• The NHS website has information on pregnancy and pre-eclampsia. 

• Action on Pre-eclampsia provides support and information for women with pre-eclampsia and their families (helpline: 01386 761 848; [email protected]). 

• Antenatal Results and Choices has a helpline for people whose unborn baby has been diagnosed with a condition. Call 0207 713 7486 or text 07908 683004.