Bilateral Renal Agenesis
Bilateral renal agenesis (BRA) is a rare and life-limiting condition in which the baby’s kidneys never develop.
What is Bilateral Renal Agenesis?
Bilateral renal agenesis (BRA) is a rare and life-limiting condition in which the baby’s kidneys never develop.
The role of the kidneys is to clean waste out of the body and control fluid balance. During the later parts of pregnancy, the baby’s kidneys also produce amniotic fluid (the liquid around the baby). This fluid is needed to help the lungs grow. Without enough amniotic fluid, the lungs of babies with BRA do not fully develop and cannot support the baby’s breathing after birth.
BRA can be associated with other physical defects and chromosomal disorders. Women pregnant with a child who has BRA will often lose the baby (miscarry).
Unfortunately, there currently is not a cure for babies with BRA. These babies usually only live for a few hours after birth.
BRA is usually diagnosed during pregnancy. After diagnosis, parents are offered support to help cope with the difficulty of expecting a child with a life-limiting condition. A prenatal consultation with the palliative care team will be arranged. They will help you make plans for your baby’s care at birth.
How is Bilateral Renal Agenesis Diagnosed?
Bilateral renal agenesis is usually found between 18 and 22 weeks of pregnancy during routine prenatal ultrasounds. If they find that the amniotic fluid is low and the baby’s kidneys are missing, your doctor may recommend more testing, such as an MRI (magnetic resonance imaging). This is done to confirm the diagnosis. Your doctor may also recommend genetic testing (blood tests or amniocentesis) to look for genetic or chromosomal disorders that can go along with BRA.What are the Symptoms and Causes of Bilateral Renal Agenesis?
The lack of amniotic fluid can cause other problems, including defects in the nervous system, the stomach and intestines, the eyes and ears and the limbs (such as clubfoot). The combination of organ and physical defects caused by a lack of amniotic fluid is called “Potter Syndrome.” Potter Syndrome can be caused by BRA alone or by another chromosomal disorder that triggers BRA.
No one know what causes BRA. Scientist think there is a genetic reason. Other possible risk factors include:
- Having diabetes
- Exposure to toxins or chemicals
What Happens Between Diagnosis and Delivery?
After a diagnosis of bilateral renal agenesis, you will continue to receive care from your obstetrician. They will discuss the different options available to you for managing your pregnancy. You may be referred to The Fetal Center at Nationwide Children’s for additional information and help.
Through The Fetal Center, you can see a doctor who specializes in the care of high-risk patients. You may also meet with specialists to learn more about how your baby will be cared for when he or she is born. A fetal nurse coordinator can also help answer your questions and concerns, guide you through your pregnancy and prepare you for what to expect.
Perinatal Palliative Care
When prenatal testing shows that a baby has a life-threatening or life-limiting condition, many parents feel overwhelmed with the challenges of expecting a newborn with a complex illness.
Perinatal palliative care helps families through a confusing and heartbreaking diagnosis. They can help them cope with the challenges of expecting a newborn with a potentially fatal illness.
You will be faced with many hard decisions after your baby’s diagnosis. The goal of Perinatal Palliative Care is to provide compassionate and expert care starting from the time of diagnosis. While there is no cure for many of the conditions commonly referred for palliative care, there are many things the team can do to support you, your baby and your family.
Who is Part of a Perinatal Palliative Care Team?
Perinatal palliative care is provided by a multi-disciplinary team of specialists. The team is committed to supporting you and your family. You and your family will meet the team before delivery. You will see them, as needed, during your pregnancy and after delivery.
Palliative care is highly individual. There is no one right path for every family. We can help you make decisions that fit with your goals and values while best caring for your baby. We will explain the different medical treatments available while considering what is best for your family so you can make the most out of your time with your baby.
Many families find the time between diagnosis and delivery very emotionally difficult. Coordinators can help connect you with counseling services and support groups.
After delivery
You should discuss your plans for labor and delivery with your obstetrician. Your perinatal palliative care team will work with your multidisciplinary delivery hospital team to plan for maternal, newborn and family-centered care that is in line with your values, goals and requests. The plan for how to care for your baby can evolve over time, as well.
Future Pregnancies
Most parents who have one child with BRA do not have another with the condition. However, your doctor may recommend genetic counseling to discuss risks for a future pregnancy because bilateral renal agenesis can be related to inherited disorders. Your doctor may also recommend that you and your family members be screened for renal problems.
Additional Resources
You may be able to find online support groups created by parents who have had a baby diagnosed with bilateral renal agenesis or Potter Syndrome.