Congenital nephrotic syndrome

Congenital nephrotic syndrome is usually caused by an inherited faulty gene. For the condition to be passed on to a child, both parents must have a healthy copy of the gene and a faulty one.

This means they don't have nephrotic syndrome themselves, but there's a one in four chance that any children they have will develop the condition.

Treating congenital nephrotic syndrome

If your child has congenital nephrotic syndrome, they'll need frequent albumin infusions to help them grow and develop normally. This often requires a stay in hospital.

Sometimes parents can be trained to administer the treatment at home. Your child will be regularly reviewedat a clinic, where their blood pressure, growth, weight, kidney function and bone health will be monitored.

It can be difficult for parents to decide which option is best, so you should talk to your doctor about the pros and cons of hospital-based and home-based treatment.

Dialysis and kidney transplants

In some cases, your doctor may recommend surgery to remove one or both of your child's kidneys. This will stop proteins being lost in your child's urine and reduce their risk of potentially serious problems, such as blood clots.

This means they'll be dependent on dialysis, where a machine replicates kidney function, from an early age until they can receive a kidney transplant.

A person only needs one kidney to survive, soa living person can donate a kidney. Ideally, this should be a close relative.

This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.

Find out more about the NCARDRSregister .

Content supplied by the NHS Website

Medically Reviewed by a doctor on 21 Dec 2018