Living with VACTERL Association
Renal Care
Renal and urinary tract abnormalities are common in people with VACTERL association and may continue to affect health throughout adulthood. Even when treated in childhood, lifelong monitoring remains important because these conditions can increase the risk of infections, high blood pressure, and chronic kidney disease (CKD) over time.
Possible long-term complications include:
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Recurrent urinary tract infections (UTIs)
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Bladder dysfunction or incomplete bladder emptying
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Urinary incontinence
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Vesicoureteric reflux (VUR), where urine flows backward toward the kidneys
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Kidney scarring or reduced kidney function
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High blood pressure
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Increased risk of chronic kidney disease
Why Ongoing Monitoring Matters
Kidney and urinary tract problems may worsen gradually and sometimes cause few symptoms in the early stages. Regular monitoring helps detect complications early and protect long-term kidney health.
Healthcare providers may assess for symptoms such as:
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Frequent urinary tract infections
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Blood in the urine
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Pain in the lower back or sides
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Changes in urinary function
Monitoring and Investigations
Long-term follow-up may include:
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Blood pressure monitoring
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Kidney function blood tests
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Urinalysis to check for protein, blood, or infection
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Renal ultrasound to assess kidney size, swelling, or blockage (hydronephrosis)
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Voiding cystourethrogram (VCUG) if reflux is suspected
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CT or MRI scans in selected cases
In some patients a DMSA or a MAG3 Renogram[₁] is used to assess the structure and location of the kidneys and to check how well they are working. It is also used to show any blockages or obstructions in the kidneys that might stop them working as well as they should.
Red Flag Symptoms
Urgent medical assessment is recommended if any of the following occur:
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Sudden decrease in urine output
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Persistent pain or swelling in the sides or back
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Recurrent fevers associated with urinary infections
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Newly diagnosed high blood pressure
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Increasing tiredness, swelling (oedema), or nausea, which may suggest worsening kidney function
Early detection and treatment of urinary or kidney problems can help reduce the risk of long-term complications and support better overall health.
“For much of my life, I lived with a persistent, dull pain that seemed
muscular in nature. Because of my twisted, rigid spine, I assumed it was simply part of my vertebral condition. When the pain worsened, doctors usually increased my medication. Yet deep down, I often felt this pain was different from what I had come to know over the years”
"The assumption in medical care was that I had been “fixed” when in reality, the impact continued."
Further information: https://kidneycareuk.org/
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If you are unsure about any aspect of your health or treatment, please consult a healthcare professional immediately.