Guidance

Bilateral renal agenesis: information for parents

Updated 9 March 2020

1. Overview

This information will help you if your baby is suspected of having bilateral renal agenesis following your 20-week scan (sometimes referred to as the mid-pregnancy scan). Bilateral renal agenesis means your baby does not have kidneys.

We hope this information helps you and your health professionals to talk through the next stages of your and your baby’s care. This information should support, but not replace, discussions you have with health professionals. Finding out there may be a problem with your baby’s development can be worrying. It is important to remember you are not alone.

We will refer you to a specialist team who will do their best to:

• provide more accurate information about your baby’s condition
• answer your questions
• help you plan the next steps

2. About bilateral renal agenesis

Bilateral renal agenesis is a rare condition where both kidneys do not develop.

Most babies are born with 2 kidneys, one on the left side and one on the right side. Kidneys are part of the urinary system. They filter waste and additional fluid from the blood and this is removed from the body in the form of urine (wee). Kidneys also produce hormones that help strengthen bones, control blood pressure and direct the production of red blood cells.

Kidneys form in the very early stages of a baby’s development. After around 12 weeks of pregnancy, they start to produce urine which contributes to the amniotic fluid (the water around the baby inside the womb). Babies need amniotic fluid for their lungs to develop.

A baby developing as expected

As babies with bilateral renal agenesis do not have any kidneys, there is very little or no amniotic fluid at the time of the 20-week scan. No fluid or small amounts of fluid around the baby means that their lungs will not develop properly. Sadly, this means that these babies will not survive after birth. There is no way to stop or cure this condition.

2.1 Causes

We do not know exactly what causes bilateral renal agenesis, but we do know it is more common in boys. It is not caused by something you have or have not done. It is sometimes linked to other medical conditions, like those affecting your baby’s chromosomes (genetic information). You will be able to discuss your individual circumstances with a specialist team.

Bilateral renal agenesis happens in about one baby out of every 5,000 (0.02%).

3. How we find bilateral renal agenesis

We screen for bilateral renal agenesis at the 20-week scan (between 18⁺⁰ to 20⁺⁶ weeks of pregnancy).

4. Follow-up tests and appointments

As the result of the scan suggests your baby has bilateral renal agenesis, we are referring you to a team of experts in caring for pregnant mothers and their babies before they are born. They may be based at the hospital where you are currently receiving antenatal care, or in a different hospital. You will need a second scan to find out for sure if your baby has the condition. The specialist team will be able to confirm if your baby has bilateral renal agenesis and what this might mean.

It may be useful to write down any questions you want to ask before you see the specialist team.

5. Outcome

There is no treatment for bilateral renal agenesis. Sadly, babies with no kidneys will be stillborn or die very soon after birth as they cannot survive without properly developed lungs and kidneys.

6. Next steps and choices

You can talk to the team caring for you during your pregnancy about your baby’s bilateral renal agenesis and your options. These will include continuing with your pregnancy or ending your pregnancy. You might want to learn more about bilateral renal agenesis. It can be helpful to speak to a support organisation with experience of helping parents in this situation.

If you decide to continue with your pregnancy, the specialist team will help you plan your care. As there is sadly no cure for bilateral renal agenesis, the team will discuss how you wish your baby to be cared for after birth. This is called palliative care. Palliative care is when health professionals help relieve symptoms and make people comfortable when no treatment or cure is available. In the case of bilateral renal agenesis, your baby will be kept comfortable until he or she dies, usually within a few hours of birth.

If you decide to end your pregnancy, you will be given information about what this involves and how you will be supported. You should be offered a choice of where and how to end your pregnancy and be given support that is individual to you and your family.

If you wish to build some memories of your baby, staff will offer you and your family help to do so.

Only you know what the best decision for you and your family is. Whatever decision you make, your healthcare professionals will support you.

7. Future pregnancies

If you decide to have another baby, they are unlikely to have bilateral renal agenesis. If you, your partner or any of your children have had problems with your kidneys, you may be referred to a team specialising in genetics.

8. More information

Antenatal Results and Choices (ARC) is a national charity that supports people making decisions about screening and diagnosis and whether or not to continue a pregnancy.

Stillbirth and neonatal death charity (Sands) is a national charity that supports anyone affected by the death of a baby and works to reduce the number of babies dying.

Together for shorter lives is a national charity that makes sure seriously ill children and their families make the most of every moment they have together, whether that’s years, months or only hours.

InfoKID is an online resource for parents and carers with information about kidney conditions in infants, children and young people.

Find out how Public Health England and the NHS use and protect your screening information.

Find out how to opt out of screening.

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Public Health England (PHE) created this leaflet on behalf of the NHS.