Screening for sickle cell and beta thalassaemia

Newborn screening - the effects on parents

Many parents who discover unexpectedly after newborn screening that their baby is a carrier panic at first that there is something seriously wrong with the baby's health. They urgently need information and counselling to explain that being a carrier is not the same as having the condition, and their baby will be healthy. (See sections on 'Newborn screening without carrier screening in pregnancy', 'Communicating results' and 'Explaining genetics and risk'). 

After this immediate fear has been dealt with, the next most important thing will be for the parents themselves to be screened. In most cases the results will show that one parent is a carrier. Again, the parent's own health is not affected, but if the couple have other children together each baby will have a 1 in 2 risk of also being a carrier. Occasionally a couple will learn that they are both carriers. In this case they will need counselling about future pregnancies, because each child will have a 1 in 4 risk of having the condition. Some people find it quite stressful waiting for these results, while others are not too anxious.

Parents may have other questions, such as where it has come from in their family. Most people contacted family members to see if anyone else knew they were a carrier or to suggest they might also be screened. (See 'Telling people - implications for families').

In some relationships, the discovery that the baby is a carrier can raise questions over who is the father of the baby. One couple had talked to each other about their fears while they were waiting for their carrier screening results. In the end they found she was a carrier.

Parents will also have questions about the longer term implications for their child and when to inform the child that he or she is a carrier. Parents all felt it was important that their child should know about how the condition is inherited before they found a partner and had their own children when they grew up. (See also 'Telling people - implications for relationships and marriage'). Although everyone understood that their child would remain healthy, there were some queries about whether anyone needed to know the child was a carrier if they were having other health problems or treatment. Although most people who are carriers are generally in good health, there are some possible health effects they need to be aware of. There is a risk to sickle cell carriers of "sickling" under situations of very severe oxygen deprivation. "Sickling" is when the red blood cells become sickle or crescent shaped and start to block the blood vessels. If deep sea diving or mountain climbing, the individual should make sure that they are well oxygenated but they do not have to avoid these activities. The situation that people are most likely to encounter oxygen deprivation is during anaesthesia, so it is helpful for doctors to know if someone is a carrier if an operation is planned. This does not apply to carriers of other unusual haemoglobins..

For parents who discover from newborn screening that their baby has a sickle cell disorder or beta thalassaemia major, there can be considerable stress and shock. Parents will of course worry about their baby's future, but they may also find it affects their relationship with their partner, as one mother described.

Again, counselling, support and information are vital in helping people to adjust and understand what the future holds for their baby.

Last reviewed December 2018.
Last updated September 2015.


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