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PubMed This is a summary of 58 peer-reviewed journal articles Updated
Pediatric Nephrology

Renal Agenesis: A Comprehensive Guide for Parents

At a Glance

Renal agenesis is a developmental condition where a baby is born missing one or both kidneys. The long-term outlook depends on whether the diagnosis is unilateral (one missing kidney) or bilateral (both missing), and it is not caused by anything a parent did during pregnancy.

Finding out during a prenatal ultrasound or shortly after birth that your child is missing one or both kidneys is a profoundly frightening experience. It is completely normal to feel a wave of shock, grief, or confusion. The most important thing to know right now is this: Renal agenesis is not caused by anything you did or didn’t do during pregnancy. It is a complex biological occurrence where the kidneys fail to develop.

The medical term for missing a kidney from birth is renal agenesis. The outlook and the journey ahead depend entirely on whether one kidney is missing, or both.

This guide is designed to empower you with evidence-based information, helping you understand your child’s diagnosis, prepare for conversations with specialists, and make informed decisions. We have broken the information down into four detailed sections:

01

Understanding Renal Agenesis: Biology & Diagnosis

Learn about unilateral and bilateral renal agenesis. Understand prenatal diagnostic signs like the lying down adrenal gland and what they mean for your baby.

02

Bilateral Renal Agenesis & Potter Sequence

Learn about Bilateral Renal Agenesis (BRA) and Potter sequence. Understand the impact on lung development, palliative care options, and the RAFT trial.

03

Living with a Solitary Kidney: Protection & Monitoring

Learn how to protect your child's solitary kidney (URA). Understand compensatory hypertrophy, safe sports, dietary needs, and essential monitoring like ABPM.

04

Associated Syndromes & Extra Screenings

Learn about conditions associated with renal agenesis, including VACTERL, OHVIRA, and Zinner syndrome. Discover which extra baseline screenings your child needs.

Common questions in this guide

What is renal agenesis?
Renal agenesis is a biological occurrence where a baby is born missing one or both kidneys because they failed to develop properly during pregnancy.
Did I do something during pregnancy to cause renal agenesis?
No. Renal agenesis is a complex biological event and is not caused by anything you did or did not do during your pregnancy.
What is the difference between unilateral and bilateral renal agenesis?
Unilateral renal agenesis means your baby is missing one kidney, which often allows for a healthy life with proper monitoring and protection. Bilateral renal agenesis means both kidneys are missing, which is a much more severe condition that affects amniotic fluid and lung development.
Will my baby need extra medical screenings if they are missing a kidney?
Yes. Missing a kidney is often linked to other physical differences in the heart, spine, or reproductive tract. Doctors will typically recommend baseline screening ultrasounds to ensure your baby's whole body is healthy.
What are the next steps if my baby is missing both kidneys?
If your baby has bilateral renal agenesis, you will likely need to speak with a fetal therapy specialist to discuss care options. These can range from comfort-focused palliative care to experimental interventions like the RAFT trial.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Is this a case of unilateral or bilateral renal agenesis, and how confident are you in the diagnosis based on the imaging?
  2. 2.Can you connect us with a pediatric nephrologist or a fetal therapy specialist to discuss our next steps?
  3. 3.Are there signs of any other anatomical differences or associated syndromes that we need to monitor right now?

Questions For You

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This page is for informational purposes only and is designed to help parents understand a renal agenesis diagnosis. It does not replace professional medical advice from your pediatric nephrologist or fetal care specialist.

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