Autosomal dominant polycystic kidney disease (ADPKD) is a condition where fluid-filled cysts develop in both kidneys. The kidneys are usually filled with numerous thin, fine tubes called tubules, which filter blood and produce urine. For people who are affected by ADPKD, these tubes eventually become big and fill with fluid, forming cysts. The formed cysts affect the rest of the kidney and the kidney will stop working automatically. Autosomal dominant polycystic kidney disease usually affects one or two in every 1000 people. Even though ADPKD causes continuous kidney failure, it is very infrequently symptoms are shown during childhood. If your child is a victim of ADPKD, they usually don’t need treatment for kidney issues until later in life. 

The cause of ADPKD is a faulty gene, which is normally inherited from their parents. If one of the parents has ADPKD, it is a 50% chance that your child will receive ADPKD, and as well there is a 50% that your child won’t get ADPKD. The risk applies to every child you have. The parents who don’t have ADPKD can have a child with the disease. It happens when a new fault gene is developed. This case is very rare. It usually happens only in about six to eight out of every 100 children born with ADPKD, whose parents don’t contain the disease. So the possibility of your child having ADPKD mostly depends upon the fact whether one among the parents does or does not have ADPKD. And if both of the parents don’t have ADPKD, there is a lesser chance of your child infecting with ADPKD.

The symptoms of ADPKD in children include pain in the sides or back, urinary tract infections, kidney stones, passing more urine than usual, and blood in the urine. It is always a question of whether the child with ADPKD should be tested or not. It is always best to test your child in the early stage itself if one of the parents has ADPKD. It’s best that children know about this and grow.

What are the chances of getting ADPKD if one parent has the disease?

The inherited condition of Polycystic kidney disease (PKD) is characterized by the growth of cysts on the affected kidneys. The most common inherited form of polycystic kidney disease is the Autosomal dominant PKD (ADPKD). If a parent has the autosomal dominant Polycystic kidney disease, there is a 50 percent chance that they pass the altered gene and associated condition to each of their children. If an individual does not inherit the PKD gene, there is no chance that their kids inherit the gene because it never ‘skips’ a generation. However, sometimes a person can develop Polycystic kidney disease when there is no family history of the condition. The reason for this may be a genetic change or a different inheritance pattern. In such cases, there is around a 50 percent chance that the patient has passed the altered gene as well as the associated disease to each of their children. 

In the majority of cases, Autosomal dominant PKD leads to kidney failure. If one of the parents already has the autosomal dominant polycystic kidney disease, each of their children will have a 50-50 chance of inheriting it. Some kids can get ADPKD even if neither of their parents had the disease. However, it is rare for an individual to get Polycystic kidney disease this way. If one of your PKD genes gets a defect on its own, this can happen. PKD is a genetic disease that is caused by a problem with your genes. This condition can lead to the formation of cysts inside the kidneys. When these cysts grow, it makes the kidneys much larger than they should be. This can cause damage to the kidney tissues. 

In people with PKD, about 9 out of every 10 people will have the autosomal dominant form. The symptoms of ADPKD may not appear until a person affected by it is between 30 and 50 years old. The inherited kidney disease of ADPKD is caused due to a problem with a specific gene. In most cases, it is inherited from a parent who also has ADPKD. The child needs to have just one parent with ADPKD to inherit the disease. On average, there is about a 75% chance a child will be born with PKD if both parents have ADPKD.

Should my child be tested for ADPKD?

Children will be at risk of having ADPKD if one of their parents already has the condition. Parents who have ADPKD or autosomal dominant polycystic kidney disease often enquire whether they should have their kid tested for ADPKD. Earlier, doctors used to believe that it was best for the kids to not be checked for autosomal dominant PKD until they were old enough to decide for themselves. The doctors recommended waiting until these children grow and mature so that they can decide whether or not they want to have the tests. Besides, some GPs and kidney specialists may still have this view. 

Nowadays, many experts now advise that children should be tested. However, before testing the parents should agree with healthcare professionals that this is the best thing to do. Depending on the children’s age and understanding, children can be included or excluded in this discussion. It is advised that the parents go through counseling from experts before deciding to go ahead with tests. After considering all of the available options, parents can decide whether or not to wait until their kid is old enough to decide about testing for themselves.

Advantages of testing ADPKD in childhood

  • Genetic testing often provides an answer as to whether or not your child has autosomal dominant polycystic kidney disease, meaning less uncertainty.
  • If more innovative treatments become available for children with ADPKD in the future, the medical professionals or doctors may be able to offer these to your kid.
  • For your kid, receiving a diagnosis of ADPKD or autosomal dominant polycystic kidney disease when they are younger may be easier for them to come to terms with it.

Disadvantages of testing in childhood

  • Testing for ADPKD during childhood may stop your kid from being able to decide for themselves as they mature. They don’t get an opportunity to decide as an adult whether or not they want to be tested for ADPKD.
  • After diagnosis, if autosomal dominant PKD is confirmed, it may have implications for your kid’s future health insurance as well as life insurance.
  • Some people will not have any signs or symptoms during their childhood. Therefore, knowing they have autosomal dominant polycystic kidney disease may not make a difference to their health, although it might increase worry.

About Author