A1ATD is a genetic condition. It usually affects adults but can sometimes cause liver problems in babies and young children.

It is diagnosed by looking at a protein in your child’s blood and by looking at their genes.

There are different types of A1ATD caused by different combinations of genes. Your child’s medical team should explain what genes your child has and what this means for their care.

For most children, the jaundice caused by A1ATD gets better by age 2.  They will need to have ongoing monitoring from their local hospital and a specialist liver unit. But otherwise most will go on to live normal lives.

In adulthood they will need to avoid smoking, alcohol and becoming overweight. Having A1ATD makes all these things even more risky.

In rare cases it can be a very serious condition. In the most serious cases children can need a liver transplant.

Because it is so rare it is hard to give exact numbers on how many children become seriously unwell. If you would like more information on this you can find out more here.

Your child should be referred to a specialist centre. This usually means travelling to a hospital further away from home.

The specialist team will be experts in the condition. They will look after your child while they are unwell.

They will also follow up and monitor your child until they become an adult and move to an adult service.

Find out more about treatments and monitoring

There is no specific treatment for A1ATD in children. Care will focus on:

•  managing any symptoms
• making sure they get all the nutrients they need to grow

In very severe cases a liver transplant is sometimes needed. It is a big operation. But the outcome for children with A1ATD who have a transplant is very good.

Find out more about treatments and monitoring

How your child is affected will be very individual to them. The best source of information will be your specialist A1ATD medical team. They will know your child’s history and test results and can give you personal advice.

You can also use the rest of the information about A1ATD on this website.

It is a lot to take in. But you don’t have to do this all at once. Use the A1ATD menu to find the information you need now. You can come back to it whenever you need it.

Some of our information will be more relevant to adults with A1ATD. This could help later when you support an older child in caring for themselves.

All our information is made alongside patients, families and NHS medical experts.

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