Today, on March 14, the world is celebrating World Kidney Day. For those of us who work with people with Spina Bifida (SB), this is an important day to think about the importance of the kidneys in our community. Did you know that most infants with SB are born with kidneys that work well, but many will face a loss of kidney function by age five? In fact, according to research out of the Centers for Disease Control and Prevention (CDC) and its National Center on Birth Defects and Disability (NCBDDD), people with SB develop kidney failure at a much younger age than people without SB.

 

This is due to the fact that most children with SB have a neurogenic bladder, in which the nerves going from the spinal cord to the brain do not work properly. A child with SB may not be aware that his or her bladder is full and often cannot empty the bladder well. Additionally, the sphincter muscle of the bladder may not work—it may either stay relaxed or not relax when the bladder is contracting. If the bladder doesn’t empty well, it will cause urine to back up into the kidneys and that can cause damage to the kidneys and/or lead to urinary tract infections. Only about 5% of children with SB are able to empty their bladders without help.

 

NCBDDD houses the National Spina Bifida Program (NSBP) and the National Spina Bifida Patient Registry (NSBPR). Because of the connection to early kidney disease in people with SB, a subset of clinics from the NSBPR began working on a treatment plan aimed at knowing how and when to intervene to protect babies’ kidneys.

 

In 2014, the Urologic Management to Preserve Initial Renal Function (UMPIRE) Protocol began. A group of nine SB clinics out of the NSBPR are testing a treatment plan contains a detailed medical decision tree, or a multilevel drawing that shows the choices available at each point in managing a patient’s medical care.

 

This decision tree outlines the tests and scans that are performed at specific time intervals in the treatment plan. They are designed to:

> track and manage each baby’s bladder function,

> identify infections in the bladder and kidneys,

> monitor how well the kidney functions, spot kidney scarring, and

> determine when babies with kidney problems should receive medications.

2. This unique treatment plan is designed to allow physicians at SB clinics to make changes to the series of tests and scans as appropriate for each child with SB. Details on these changes and the data from the tests and scans are collected at each clinic.
4. Most importantly, the data are analyzed and will determine a new “best practice” standard of care for babies born with SB. This standard of care will then be published and shared with SB clinics throughout the United States by the Spina Bifida Association (SBA).
6. So today, SBA celebrates World Kidney Day, with the hope that the future will be brighter for people with SB…and they will face less kidney disease.