Contents
― What your baby’s bloodspot test result means
― Why it is important to know your baby is a sickle cell carrier
― Future pregnancies and your wider family
― How the test result is recorded
― Where to find more information
What your baby’s bloodspot test result means
The result from your baby’s newborn bloodspot screening test show that your baby is a sickle cell carrier. This means that while your baby will not develop sickle cell disorder, it is important to know they are a carrier because it can affect their health and how they plan their own family in the future.
Why it is important to know your baby is a sickle cell carrier
On very rare occasions, extra care should be taken because of your baby’s sickle cell carrier status. If your baby needs a general anaesthetic for an operation or for dental treatment, make sure healthcare professionals know they are a sickle cell carrier.
If your child takes part in vigorous physical activities as they grow older, they should be careful to stay hydrated, take breaks and stay cool during the activities.
Although being a carrier of the sickle cell gene gives your child some protection against malaria during the first few years of life, if they travel to an area where malaria is a risk they should still take all recommended precautions. This includes taking anti-malaria medication.
As your child grows, it’s important for them to know they are a sickle cell carrier. This knowledge will help them understand the risks involved in having children and how to minimise those risks. In the future, before considering a pregnancy, they may want their partner to be tested to see if they are also a carrier of an unusual haemoglobin gene. The NHS offers counselling to explain the possible risks and available options.
Future pregnancies and your wider family
Your baby inherited the sickle cell gene from either you or the biological father of the baby. This means that one or both of you are likely to be carriers as well.
We recommend both you and the biological father get tested to find out who is a carrier, especially if this information was not provided during your pregnancy. This is particularly important if you plan to have more children, as there is a possibility that your next child could have a haemoglobin disorder if both parents are carriers. If you want to learn more about how it might affect future pregnancies, you can ask to be referred to the All Wales Medical Genomics Service (AWMGS). Your health visitor can help you with this.
Other family members, such as brothers and sisters, aunts, uncles and cousins, may want to consider getting tested before starting a family, as they could be carriers too. Sharing this information with them may be helpful.
Your baby’s test result is recorded as sickle cell carrier or Hb AS. The letter A represents the usual haemoglobin A gene, while the letter S represents the sickle cell gene.
Where to find more information