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Newborn Bloodspot Screening - Your baby's screening result - Haemoglobin E carrier

This information explains what being a carrier of an unusual haemoglobin gene means for your baby, you and your wider family.

 

Contents

― Your baby's screening result
― Carriers of unusual haemoglobin genes
― What this result means for your baby

― Protection against malaria
― Future pregnancies and your wider family
― More information and support
― Using your information

 

Your baby's screening result

The results of your baby’s ‘heel prick’ screening blood test show your baby does not have a sickle cell disorder.

However, the results show your baby carrries one unusual gene for haemogloblin, called haemoglobin E, and one usual gene. This is written as Hb AE and is known as being a carrier of haemoglobin E.

Haemoglobin is the substance in the blood that carries oxygen around the body.

Approximately four babies born in Wales each year have an unusual haemoglobin carrier newborn bloodspot screening result.

This information explains what being a carrier of an unusual haemoglobin gene means for your baby, you and your wider family.

 

Carriers of unusual haemoglobin genes

Babies inherit characteristics from their parents’ genes. For example, genes control the colour of their skin, hair and eyes.

For each characteristic, your baby gets one gene from their biological mother and one from their biological father. Genes also control the type of haemoglobin they inherit.

Your baby is a carrier because they inherited one gene that makes usual haemoglobin from one parent and one gene that makes unusual haemoglobin from the other parent.

Your baby will never develop a haemoglobin disorder because they inherited one usual gene, but they will always be a carrier.

 

What this result means for your baby

A carrier of Haemoglobin E is healthy and will not need medical help to lead a normal life.

However, their blood cells are often smaller than usual and their haemoglobin level is lower than normal. This is different to iron deficiency anaemia. Always tell your healthcare professional your baby is a haemoglobin E carrier so they can check your baby’s iron levels before giving iron supplements.

Haemoglobin E is not the same as Haemoglobin S (sickle cell). A carrier of Haemoglobin E does not carry a sickle cell disorder. However, it’s important that your baby grows up knowing about being a Haemoglobin E carrier and understands the risks involved if they want to have a family.

If they have a baby with someone who is a Haemoglobin S carrier, there would be a 1 in 4 (25%) chance that their baby would have haemoglobin SE disease. This is a sickle cell disorder and would need lifelong treatment.

If they have a baby with someone who is a beta thalassaemia carrier, there would be a 1 in 4 (25%) chance that their baby would inherit E beta thalassaemia major and would need lifelong treatment. See the diagram below.

The chances shown in the diagram above are the same in every pregnancy for this couple.

Their baby could inherit two genes that make unusual haemoglobin. If this happens, their baby will have a haemoglobin disorder. There is a 1 in 4 (25%) chance of this happening.

Their baby could inherit one gene that makes usual haemoglobin and one gene that makes unusual haemoglobin. If this happens, they will be a carrier. There is a 2 in 4 (50%) chance of this happening.

Their baby could inherit two usual genes. If this happens, the baby will be unaffected. There is a 1 in 4 (25%) chance of this happening.

When your baby grows up they can ask any future partner to have a test to see if they also carry an unusual haemoglobin gene. NHS counselling is available to explain the risks and choices involved.

 

Protection against malaria

There is some evidence that being a carrier of an unusual haemoglobin gene gives children some protection against malaria, but only during the first couple of years of their life.

It is important your child takes all the normal precautions if they are travelling to a country where there is a risk of malaria. This includes taking anti-malaria medication.

 

Future pregnancies and your wider family

Your baby inherited an unusual gene from either you or your partner. This means that you, your baby’s father or both of you are also carriers.

We recommend both you and your partner get a test to find out who is a carrier if you were not already given this information during pregnancy. This is particularly important if you are thinking of having another baby. If both of you are carriers, your next baby could have a haemoglobin disorder.

The test is a blood test and takes just a few minutes. To arrange the test, speak to your GP. If you are referred to the All Wales Medical Genomics Service (AWMGS) they will also be able to arrange the test for you.

It may be a good idea to encourage other members of your family, such as brothers, sisters, aunts, uncles and cousins, to get a test before they start a family in case they are carriers too. Showing them this information may help.

If you would like to discuss your baby’s Haemoglobin E carrier result and be given more information about how it may affect future pregnancies, you can be referred to the All Wales Medical genomics Service (AWMGS). Please speak to your health visitor who will be able to arrange this for you.

 

More information and support

 

Using your information

For us to contact you as part of the programme, we will need to handle some of your and your baby’s personal information. If you need more information about this, you can:

 We also keep personal details to make sure that the standard of our service is as high as possible. This includes checking your baby’s records if your baby is found to have a condition after having a screening test which showed a ‘not suspected’ result.

 We only ever publish information as statistics and we never publish personal details. We pass on your personal information to health professionals or organisations who need it, including your GP, health visitor and consultant paediatrician. These professionals must protect your personal information in the same way as we do.

All our paper and computer records are stored and processed securely, away from public access.

 

 

Information adapted from a resource developed by Public Health England for the NHS.