Information About Your Baby's Diagnosis and Treatment Options
We know this diagnosis is overwhelming. This presentation will help you understand what's happening and what choices you have. You are not alone in this journey.
Bilateral Renal Agenesis (BRA) means your baby's kidneys did not form during pregnancy.
Kidneys make urine. Urine becomes the fluid around your baby.
Without kidneys, there is no fluid. This condition is called anhydramnios.
Recent medical advances have changed what is possible for babies with this diagnosis.
The fluid around your baby helps their lungs grow and develop.
No Kidneys
No Fluid
Lungs Cannot Develop
Without treatment, babies with BRA cannot breathe after birth.
Historically, this diagnosis was always fatal.
The RAFT Trial studied whether replacing the missing fluid could help babies' lungs develop.
Amnioinfusion means putting fluid into the uterus through a needle guided by ultrasound.
"Serial" means the procedure is repeated multiple times throughout pregnancy.
This gives the lungs a chance to grow normally.
Continuing the pregnancy without intervention.
Focus on comfort care and allowing you to meet your baby.
This remains a valid, ethical choice.
Serial amnioinfusions to help lungs develop.
Goal: Give baby a chance to survive and eventually receive a kidney transplant.
Requires intensive medical care.
Both options honor your values and your baby. We will support you either way.
When: Treatments start before 26 weeks of pregnancy.
How Often: Every 2 to 12 days, depending on your body's response.
The Procedure: Using ultrasound, we guide a needle into the uterus and inject sterile fluid.
Average number of procedures: 11 per pregnancy
(Range: 9 to 15 procedures)
This is not a simple treatment. It requires commitment and frequent medical visits.
Yes. The intervention successfully prevents lung failure.
Survival without treatment
Survived 14 days with dialysis access
The treatment works to save the lungs. 14 out of 17 babies survived the critical first two weeks.
Surviving the first two weeks is an important milestone, but it's not the full story.
Only about 1 in 3 babies made it home from the hospital.
That's 6 out of 17 babies in the study.
Survival drops after the first two weeks due to complications from having no kidneys and being born very early.
The intervention solves the lung problem. But your baby still has no kidneys.
This creates new medical challenges:
Birth
~2kg
Daily Dialysis
Months to Years
Growth Phase
To 10kg
Transplant Eligible
Ultimate Goal
Your baby must grow from about 2kg at birth to 10kg before they can receive a kidney transplant.
At the time of the study, none of the survivors had received transplants yet, but they remain candidates.
The intervention changes your pregnancy in important ways:
⚠100% Preterm Birth
Every baby was born early (median: 32 weeks).
⚠61% Water Breaking Early
Most pregnancies had ruptured membranes (PPROM).
Your safety matters. No mothers in the study died or had severe complications that lasted after pregnancy. However, the frequent procedures and high-risk pregnancy require close monitoring.
This intervention should only be done at specialized centers.
This may require relocation. Centers without these capabilities should not offer this intervention.
You must hear from multiple specialists, not just maternal-fetal medicine.
Kidney specialists who will care for your baby after birth.
Surgeons who can explain dialysis access and transplant challenges.
Support for quality of life, regardless of your choice.
We want you to have complete information from all the teams who would be involved in your baby's care.
This decision is about more than just survival. It's about quality of life and what you want for your family.
We need to be clear about two different things:
Your baby's lungs work and they can breathe.
Your child will need intensive daily medical care for years.
The intervention trades a lethal diagnosis for a severe chronic condition. This is progress, but it's not a cure.
These questions can help guide your decision:
There is no wrong answer. Your values and circumstances are unique to your family.
Choosing not to intervene is a valid, compassionate choice.
We will continue your prenatal care with a focus on your well-being.
You will have the opportunity to meet your baby and hold them after birth.
We will provide comfort care measures for your baby.
Our palliative care team will support your family through this time.
Many families find peace in this choice. It allows for a gentle, loving goodbye without the burden of prolonged medical interventions.
We will support you through this challenging journey.
Frequent procedures (every 2–12 days) until delivery.
Close monitoring for pregnancy complications.
Planning with the nephrology team before birth.
Expected NICU stay of 4–6 months or longer.
Dialysis training for home care.
You will have a team of specialists working together to give your baby the best chance possible. We will be with you every step of the way.
Before beginning intervention, genetic testing is mandatory.
Why: Some genetic conditions would prevent your baby from being a transplant candidate later.
We need to confirm your baby could eventually benefit from a kidney transplant.
This testing also helps us understand if the condition could occur in future pregnancies.
Your genetic counselor will explain the testing process and what the results mean for your family.
We want to be honest about what we know and don't know.
This is new medical territory. The RAFT trial was the first large study of this treatment.
Long-term outcomes are unknown. The oldest survivors are still very young.
Stroke risk is concerning. Researchers don't yet fully understand why strokes happen in these babies.
Dialysis in tiny babies is technically difficult. It works, but it's challenging.
Medical advances continue. What we know today may change as research progresses.
Regardless of which path you choose, we are committed to supporting your family.
Please ask us anything. No question is too small or too difficult.
We are here to help you navigate this journey with as much information and support as you need.
This is one of the most difficult decisions any parent can face. Take the time you need.
We recommend:
However, if you're considering intervention, we need to start before 26 weeks of pregnancy. We'll help you understand your timeline.
The RAFT trial represents real progress. For the first time, we can prevent the lung problems that made this diagnosis uniformly fatal.
But we also need to be honest: this intervention trades a lethal diagnosis for a chronic, life-limiting condition with significant challenges.
"What we heard from so many families was: thank you for at least giving us this opportunity to meet our child."
— Dr. Jonathan Davis, RAFT Trial Principal Investigator
Whatever you decide, we will walk this path with you. Your baby is deeply loved, and that love will guide you to the right decision for your family.
Next Steps: Schedule meetings with nephrology, surgery, and palliative care specialists. Take time to process this information. We'll answer every question you have.