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Your baby’s screening result – Isovaleric acidaemia (IVA) is suspected

Your baby’s newborn bloodspot test (heel prick test) suggests they may have isovaleric acidaemia (IVA), pronounced iso-val-air-ik acid-ee-mia. 

Your baby will need more tests to confirm whether they have IVA. 

What is IVA? 

IVA is a rare but treatable inherited metabolic disorder. 

Babies with IVA do not have enough of an enzyme needed to break down part of the protein found in food. Without this enzyme, certain harmful substances can build up in the body. If left untreated, IVA can lead to serious illness and long term health problems. 

With early diagnosis and treatment, babies with IVA can grow and develop normally, and people with IVA can live healthy, active lives.

What happens next?

A specialist metabolic team will arrange more tests to confirm whether your baby has IVA.  

It may take a few days for you to receive the test results.

Information:

If your baby becomes unwell or you are worried they aren’t feeding properly, please get medical help. 

If tests confirm that your baby has IVA, you will receive further support and care from the specialist team. They will explain the condition in more detail, answer your questions and start treatment quickly.

How you might be feeling:

It’s completely natural to feel worried or unsure when your baby needs further tests. You can find more information and support from the following groups:  

Metabolic Support UK 

  • Phone: 0845 241 2173 or 0800 652 3181 

The British Inherited Metabolic Diseases Group (BIMDG) website has a useful booklet about IVA 

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