Children's Hospital Colorado

End-Stage Renal Disease (ESRD)

What is end-stage renal disease?

End-stage renal disease (ESRD) is kidney disease that is beyond the point of healing or treatment. The term "renal" means related to the kidney. ESRD means that the kidney is no longer able to perform its main functions, which are to filter the blood to remove any waste and to balance fluids within the body.

Patients who have ESRD usually require kidney dialysis, which is a method of cleaning the blood and balancing the body’s fluids with the help of machines. If patients with ESRD do not receive dialysis to replace these vital functions of the kidney, they will need a kidney transplant to survive. Children often reach ESRD after suffering from less severe, but worsening, kidney disease for a few years. Kidney disease is different from acute kidney injury (AKI) because unlike kidney disease, AKI can improve and possibly resolve through dialysis.

What causes ESRD?

There are many types of kidney disease that can progress to ESRD. In adults, a common cause of ESRD is kidney damage caused by diabetes or high blood pressure. In children, common causes of ESRD are often related to congenital abnormalities of the kidneys and the urinary tract (CAKUT). The term congenital means the conditions are present at birth. Posterior urethral valves, for example, is a congenital condition that blocks the urethra, causing damage to the urinary tract and the kidneys. Other types of CAKUT include renal hypoplasia or dysplasia, which sometimes feature cysts in the malformed kidney or kidneys. Renal hypoplasia is a type of kidney malformation that develops while the baby is being formed in the mother's womb.

Not every form of CAKUT leads to ESRD but can lead to milder degrees of long-term kidney disease, which is called chronic kidney disease (CKD). There are also inherited metabolic conditions that affect the kidney, which can also lead to ESRD:

The following conditions can, but don't always lead to glomerulonephritis, which can then lead to ESRD:

  • Immunoglobulin A (IgA) nephropathy or Berger's disease: a kidney disease that causes the IgA antibody to build up in the kidneys
  • Focal segmental glomerulosclerosis (FSGS): a disease that causes scarring in the kidney filter, which is called the glomerulus
  • Lupus with kidney involvement or Lupus nephritis: an autoimmune disease that causes inflammation of the kidney filter or glomerulus

Who gets ESRD?

People of all ages, genders and ethnicities can get ESRD. It is more common in adults who have diabetes or are affected by other conditions that impact the kidney. Children who get ESRD are usually first diagnosed with a rare congenital or inherited disease, which then leads to ESRD.

What are the signs and symptoms of ESRD?

End-stage renal disease is the last stage in kidney disease. Depending on the speed of progression toward ESRD, your child's doctor may recognize signs and symptoms early on, or sometimes not until your child reaches ESRD. If your child has been diagnosed with a milder form of CKD due to an irreversible condition affecting the kidneys, we will monitor the disease progression with regular appointments that include bloodwork to assess kidney function.

Mild CKD may not show noticeable symptoms. In the case of more serious CKD that is getting closer to ESRD, symptoms can include vomiting, fatigue and a lack of growth. Other signs of worsening kidney function include abdominal swelling, decreased urination and high blood pressure.

What tests are used to diagnose ESRD?

It is common for your child's doctor to first detect a disease that leads to ESRD, before actually diagnosing ESRD. For example, doctors may detect congenital abnormalities of the kidneys and the urinary tract (CAKUT) very early on. Sometimes, doctors are can detect CAKUT during a routine prenatal ultrasound for mothers that are 16 to 18 weeks pregnant. If CAKUT are detected during a prenatal ultrasound, doctors will provide counseling on what to expect after birth. In other children, kidney disease can develop later in life and may require a kidney biopsy to establish a specific diagnosis, assess disease severity and guide treatment.

Bloodwork to measure kidney function is the best test to determine if ESRD has developed in patients who have kidney disease that is irreversible and progressive, often despite attempts to treat it.

We usually require additional blood tests and urine tests to assess the complications of advanced CKD and ESRD, such as anemia and bone problems. We also closely monitor blood pressure and growth. Additional testing depends on the specific cause of your child's CKD or ESRD.

What to expect from tests for ESRD

We make tests as easy as possible for our young patients. From using smaller needles appropriately sized for their veins, to using fun distraction techniques such as virtual reality headsets, we are experts at taking kids' minds off what could be a stressful situation.

How is ESRD treated?

Regardless of its underlying specific cause, ESRD will eventually require a kidney transplant. If a transplant can't be performed in a timely manner, we will use regular dialysis until a transplant has become available.

Dialysis usually comes in two forms: blood dialysis called hemodialysis (HD) or "tummy" dialysis called peritoneal dialysis (PD). Both HD and PD require a surgically placed tube to access the kidney. In the case of HD, we connect the plastic tube to a blood vessel and in the case of PD, we connect the tube through the abdomen. Both tubes have a segment that sticks out of the patient's skin.

For HD, the session takes several hours and is done several days a week in our HD unit in our Kidney Care Center. For PD, you can provide it at home on a nightly basis, while your child sleeps. In this case, your family must receive initial training. Overall, this form of dialysis allows your family to preserve more normal daily routines. Both types of dialysis only substitute the lost kidney function for a limited time and patients need to take supporting medications, follow a special diet and undergo routine laboratory monitoring.

A kidney transplant can provide kidney function that is closer to normal than a kidney on dialysis and should therefore be the ultimate goal for patients with ESRD. Patients who have received a kidney transplant still need to take medications, live a healthy lifestyle and undergo routine laboratory monitoring. However, the health and quality of life tend to be considerably better for a child who has received a transplant compared to one who must undergo regular dialysis.

Why choose us for treatment of ESRD?

Children's Hospital Colorado has the only dialysis program in the region dedicated exclusively to children. Our highly specialized team of nurses, dietitians, social workers, pharmacists and doctors is experienced in providing care specifically for pediatric patients with ESRD and CKD.

We also have one of the largest pediatric kidney transplant programs in the country and are the only pediatric kidney transplant center in the region. When it comes to laboratory testing and evaluations for transplant, we provide sensitive, child-friendly approaches to make kids feel safe and comfortable.

If it does come to the point where surgery is necessary, our entire anesthesia team is pediatric trained, and our Child Life team works with your child and your family to help you feel confident and informed about the procedure.