Prune Belly Syndrome Network

New Parent

If you are diagnosed during pregnancy, there are options and there is hope, even if medical professionals are not sure of your baby's diagnosis. Medical centers and hospitals throughout the United States perform some level of diagnostic testing; contact a high-risk obstetrics department and ask for an appointment with a Maternal-Fetal Medicine specialist.

However, you may wish to contact one or more of several experienced fetal surgery centers around the U.S. For more information, or to call for an appointment, see our partner Fetal Hope Foundation's home page: at "Fetal Health Information and Support," select "Lower Urinary Tract Obstruction (LUTO)." PBS is considered a type of LUTO, however PLEASE NOTE that the urinary tract is not necessarily blocked in PBS; therefore the life-threatening effects on the baby may not be as high as with true LUTO. Please note that it is still undefined in 2011 difficult to obtain a definitive diagnosis prenatally. Many PBS babies are improperly diagnosed even after birth.

You may also call Fetal Hope's Helpline at 1-877-789-HOPE (4673). Advanced studies such as ultrafast MRI, high-resolution ultrasound, and fetal echocardiogram are typically performed at these advanced centers. (If you become aware of fetal surgery centers outside the U.S., please contact for inclusion on this website.)

When you are deciding on your options, be sure to ask how many successful operations the surgeon has performed. This will help in your decision. For more discussion, register as a member and feel free to share your story with others who have "been there."

During the pregnancy, the baby's bladder expands a lot because not enough belly muscle exists to push the urine out. Some babies actually have a urethral blockage, too, which can be discovered using imaging technology such as ultrasound or MRI. If your baby is found to have a blockage, he or she may be eligible for fetal surgery to release the pressure inside his or her bladder. Tests will first be performed on the baby to see if you are eligible for fetal surgery.


Please feel free to call 855-ASK-PBSN anytime, we are here to help

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