Monitoring and treatment
for babies and children with alpha-1 antitrypsin deficiency
At the moment there is no specific treatment for A1ATD. Care is usually focused on monitoring and treating any symptoms. Most young children diagnosed with A1ATD will get better and have normal childhoods.
The information on this page is for:
- Parents of children with A1ATD or suspected A1ATD.
- Family, friends, carers, and healthcare professionals.
Information about treatment for adults with A1ATD deficiency.
The liver has an amazing ability to grow and repair itself. As your child’s liver grows it should start to work better.
If your child has liver damage their medical team will monitor them and treat any symptoms they have.
They might need some extra support with their diet while they get better. You can find out more about this on the Living with A1ATD page.
In rare cases, if a child has very serious liver damage they may be considered for a liver transplant.
On this page:
Monitoring for babies and children with alpha-1 antitrypsin deficiency
Your child will be monitored to check on their growth and how their liver is doing.
Liver monitoring
Doctors will keep an eye on how your child’s liver is doing. This usually involves regular liver blood tests and imaging tests such as ultrasounds.
This could mean lots of hospital visits to start with. As your child’s condition becomes more stable, they should need fewer of these visits.
Find out more about tests for liver disease
Growth monitoring
Babies and children with A1ATD may struggle to get enough energy and nutrients from their food. This means they might lose weight or not gain weight normally.
Your medical team will get in touch with your health visitor team. Your baby will probably need to be weighed every week to make sure they are growing well.
Liver transplant
In rare cases where the liver damage is very severe then a liver transplant might be needed. If this is going to happen it is usually in the first 2-3 years of life.
Transplants to treat A1ATD have a very good success rate. The new liver will have normal AAT genes. So it will make the normal protein, and your child will not have A1ATD again.
But it is a major operation. Anyone having a transplant will need to be followed up for life. They will also need to take medicines for the rest of their life. These medicines affect how their immune system works.
Liver transplant is usually only considered if the liver is failing and:
- affecting a child’s growth, development, and daily life, or
- causing complications such as ascites and portal hypertension that are getting worse, or
- the liver has completely failed (fulminant liver failure)
Can I be a liver donor for my child?
A parent or family member can sometimes donate part of their liver to a child who needs a transplant.
Children needing a transplant due to AATD usually inherit the Z version of the gene from both parents.
Children needing a transplant due to A1ATD usually inherit the Z version of the gene from both parents.
If you have 1 Z version and one normal gene (MZ genotype) then it might be possible to be a donor. But this would only be done if no other possible donor could be found.
If you would like to know more about being a living donor for your child, talk to your medical team.
Future treatments
There are some possible future treatments for A1ATD being tested at the moment. You can find out more about these here.
You can find out more about living with A1ATD, and about the support we can offer, on the next page.
Support
How Liver UK can help
A diagnosis of liver disease can be worrying, and you may have a lot of questions.
We're here for you and for your family and friends. Whether you have questions or just need someone to listen, we can help.
Your feedback
This content was last reviewed: June 2026
Our expert reviewers:
We would like to thank everyone who helped with creating and reviewing this page. Including Dr Bill Griffiths, consultant hepatologist, Cambridge university hospitals, Professor Dino Hadzic, consultant paediatric hepatologist, King’s college hospital, Dr Girish Gupte, consultant paediatric hepatologist, Birmingham children’s hospital. And all our patient and family reviewers.
Liver UK thanks Takeda UK for their kind donation to support the development of this information. Takeda UK has had no influence in the initiation, development or content of this project.
Find out how we make our patient information.
Everyone’s experience of liver disease will be different. Always talk to your specialist medical team for personal advice.
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