Babies with bilateral renal agenesis almost always die before or soon after birth, with survival possible only in rare cases with intense specialist care.
Hearing the words “bilateral renal agenesis” during pregnancy is frightening. Parents want to know straight away whether a baby can survive, what that survival would look like, and what choices they have. This article walks through what this diagnosis means, what current research shows, and how families and care teams plan next steps together.
Quick Answer To Can A Baby Survive With Bilateral Renal Agenesis?
In bilateral renal agenesis, both kidneys fail to develop. Without kidneys, a baby cannot make urine, and the amniotic fluid level drops. Low fluid leads to lungs that never fully grow. For many years, this combination was described as a lethal condition, and most newborns with bilateral renal agenesis died shortly before or soon after birth.
Some recent fetal therapies, such as repeated amnioinfusions during pregnancy and early dialysis after birth, have led to a small number of babies living longer. Trials like the RAFT study showed that, in carefully selected pregnancies, most live-born babies reached at least the stage of dialysis access, though long-term survival still dropped over time.
So, can a baby survive bilateral renal agenesis? Survival is possible, but it is rare, and it usually depends on complex fetal procedures, intensive newborn care, chronic dialysis, and, if the baby reaches childhood, a kidney transplant.
Bilateral Renal Agenesis At A Glance
Before diving into details, this table shows how bilateral renal agenesis compares with other patterns of kidney development and what that means for survival.
| Condition | Kidney Status | Typical Survival Outlook |
|---|---|---|
| Normal Development | Two working kidneys present | Normal survival related to other health factors |
| Unilateral Renal Agenesis | One kidney absent, one enlarged working kidney | Most people live full lives, with extra follow-up for blood pressure and kidney function |
| Bilateral Renal Agenesis | Both kidneys absent, no urine production | Almost always fatal without immediate renal replacement therapy and intensive care |
| Potter Sequence | Series of changes from very low amniotic fluid | Often linked to bilateral renal agenesis and severe lung underdevelopment |
| Dialysis And Transplant Plan | No kidneys; care team plans renal replacement from birth | Possible longer survival in a minority of cases, with heavy treatment load |
| No Fetal Therapy | Kidneys absent, amniotic fluid extremely low | Newborn usually dies during pregnancy or shortly after birth |
| With Serial Amnioinfusions | Fluid replaced during pregnancy to help lungs grow | Better chance of short-term survival to dialysis; long-term survival still uncertain |
What Bilateral Renal Agenesis Means For A Baby’s Body
To understand baby survival with bilateral renal agenesis, it helps to know how kidneys and lungs work together during pregnancy. Bilateral renal agenesis means both kidneys fail to form and the ureters are missing as well.
Kidney Development Before Birth
In early pregnancy, kidneys begin to form at the back of the abdomen. By the second trimester, they produce urine that flows into the amniotic sac. That urine becomes a major source of amniotic fluid.
In unilateral renal agenesis, one kidney grows large and takes over the work for both. In bilateral renal agenesis, no kidney tissue forms, so no urine reaches the sac. Fluid levels drop, a state called anhydramnios.
Lung Growth, Potter Sequence, And Survival
Amniotic fluid cushions the baby and gives space for the chest to move. When fluid is missing, the chest stays compressed. Lungs stay small and stiff; this is called pulmonary hypoplasia. Classic Potter sequence describes the combination of low fluid, small lungs, and certain facial and limb features linked with bilateral renal agenesis.
At birth, these lungs often cannot move enough air, even with a breathing machine. This is one of the main reasons babies with bilateral renal agenesis rarely survive long after delivery.
Can A Baby Survive With Bilateral Renal Agenesis? Realistic Outcomes
The plain truth is that most babies with this diagnosis do not survive. Large clinical references describe bilateral renal agenesis as almost always fatal, and newborns with no kidneys usually cannot live outside the uterus without immediate renal replacement therapy.
A small number of centers now offer fetal therapy. In the RAFT trial and similar projects, teams placed fluid into the amniotic sac many times during pregnancy. This step gave the lungs more room to grow. In that group, most live-born babies reached at least the early dialysis stage, though many still died during the newborn period or early childhood.
Reports from children’s hospitals describe rare infants who lived long enough to start chronic dialysis and later receive a kidney transplant. Those children needed repeated surgeries, months in hospital, and long-term follow-up.
Baby Survival With Bilateral Renal Agenesis Outcomes Over Time
Survival with bilateral renal agenesis depends on several linked stages. Each stage has its own hurdles and decisions for families and care teams.
During Pregnancy
Bilateral renal agenesis is usually detected on ultrasound between 16 and 22 weeks of pregnancy, when the scan shows no kidneys, no bladder filling, and very low fluid.
Once the diagnosis is clear, parents meet fetal medicine and kidney specialists. Some centers may offer fetal therapy trials, such as serial amnioinfusions, to try to improve lung growth. Others may not, often because these procedures carry risks and are available only in a small number of hospitals.
Birth And The First Days
At birth, the first question is whether a baby can breathe. Many babies with bilateral renal agenesis and classic Potter sequence die during labor or shortly after delivery because their lungs cannot take in enough oxygen, even with intensive breathing support.
In centers using fetal amnioinfusions and very early ventilation, more babies reach the stage where doctors can start dialysis. Short-term outcomes from the RAFT trial showed that most live-born babies survived at least 14 days and reached dialysis access, yet later deaths still occurred because of breathing, infection, or dialysis complications.
Dialysis In Infancy
Babies with bilateral renal agenesis cannot make urine at all. To stay alive beyond the early newborn days, they need dialysis to remove waste and extra fluid. Many centers use peritoneal dialysis for infants, which relies on the lining of the abdomen as a filter.
Dialysis in very small babies is technically hard. Catheters can fail, infections can occur, and fluid balance can swing. Families face frequent hospital stays, strict daily routines, and long nights watching machines.
Growing Toward Transplant
Kidney transplant is usually the long-term plan for any child who survives infancy with no kidneys. Transplant programs often wait until a child reaches a certain size and weight so that the donor kidney can fit and blood vessels can be joined safely.
Even after transplant, children need life-long medicines, tests, and clinic visits. Many kids do go to school, play, and build their own interests, but life stays tied to medical care in a steady way.
How Common Is Bilateral Renal Agenesis?
Renal agenesis overall is rare. Estimates from birth-defect registries suggest that unilateral renal agenesis appears in about 1 in 750 to 2,000 births, while bilateral renal agenesis affects roughly 1 to 2 in 10,000 births.
Researchers know that genes, certain syndromes, and some diabetes or medication patterns in pregnancy can raise the chance, but in many families, no clear cause is found.
Medical Disclaimer And How To Use This Information
This article shares general information drawn from medical references and parent groups. It cannot replace care from your own doctors. Each pregnancy and baby with bilateral renal agenesis is different.
If you or someone you love has this diagnosis, speak with your obstetrician, fetal medicine team, pediatric nephrologist, and palliative care team. They can explain local options, including comfort care, fetal therapy trials, or transport to a center with dialysis and transplant programs.
Clear, up-to-date summaries from sources such as the Cleveland Clinic renal agenesis overview and the Nationwide Children’s bilateral renal agenesis page can help you frame questions for your own care team.
Planning Care When Bilateral Renal Agenesis Is Diagnosed
Once bilateral renal agenesis is confirmed, parents face a series of painful choices. Some decide on comfort-only care at birth. Others want to pursue every available treatment, including fetal procedures and intensive dialysis. Many feel torn between hope for survival and concern about pain and quality of life.
No single plan suits every family. The table below lists topics that often guide conversations with doctors, nurses, and counselors.
| Topic | Why It Matters | Who To Speak With |
|---|---|---|
| Likelihood Of Survival | Clarifies current data on short-term and long-term outcomes | Fetal medicine specialist, pediatric nephrologist |
| Fetal Therapy Options | Explains whether serial amnioinfusions or trials are available and suitable | Maternal-fetal medicine team, trial coordinators |
| Birth Plan | Sets expectations for monitoring, delivery method, and immediate newborn care | Obstetric team, neonatologist |
| Breathing Support | Outlines what will happen if the baby cannot breathe on their own | Neonatal intensive care team |
| Dialysis Feasibility | Assesses whether the NICU can safely start dialysis in a very small baby | Pediatric nephrologist, dialysis nurses |
| Comfort-Only Care | Describes what gentle care at the end of life would look like for the baby and family | Palliative care team, chaplain or chosen spiritual guide |
| Long-Term Quality Of Life | Helps families picture daily life with dialysis, transplant, and frequent hospital visits | Nephrology team, transplant team, social worker |
| Family And Emotional Needs | Looks at grief, stress, and how to keep relationships steady through this crisis | Counselor, psychologist, trusted faith leader or mentor |
Living With A Bilateral Renal Agenesis Diagnosis
A diagnosis of bilateral renal agenesis shatters expectations for a simple pregnancy. Parents may feel shock, anger, guilt, sadness, or all of these in waves. None of these feelings mean you are doing this “wrong”; they are human responses to a painful loss of the future you pictured.
Some families find comfort in joining rare-disease groups or charities, such as Renal Agenesis UK, which was created by parents with their own lived experience of this condition. Others lean on close friends, relatives, spiritual leaders, or counselors.
Whether you lean toward comfort care or toward aggressive intervention, staying in close contact with your medical team helps you make decisions that match your values. Ask questions again and again. Ask for plain language. Ask to see data, not only opinions. Your baby’s condition may be rare, but your need for clear, honest, compassionate information is shared by every parent facing this diagnosis.
In the end, the answer to “Can a baby survive with bilateral renal agenesis?” is that survival is rare, fragile, and tied to major medical treatment. What matters next is how you, your family, and your care team work together to weigh that small chance of survival against the burden of treatment and to choose the path that feels most loving for your baby.