Your child is a sickle cell carrier. What does this mean for your child?
Shortly after birth, your baby had a heel prick. The heel prick blood was tested. The result shows that your child is a sickle cell carrier.
Being a sickle cell carrier does not lead to illness or cause any symptoms. Your child will not notice any effects from being a sickle cell carrier. Also, your child will not develop sickle cell disease later on, but will always be a sickle cell carrier. You do not need to worry.
What does it mean to be a ‘carrier’?
All children look like their parents in some ways. They could have the same eye colour or skin tone. These traits are genetic. You inherit them from your parents.
Each of your genes comes in a pair: one from your father and one from your mother.
Sometimes there is a mistake (defect) in one of the two genes. If that happens, then you are a ‘carrier’ of that trait. You inherit a trait that does not affect you directly. That is called being a ‘carrier’.
Your child is a sickle cell carrier. That means that your child has that mistake in one gene. Your child will not notice it at all, because the other gene in that pair does not have the same mistake. It will not make your child ill.
Your child is a sickle cell carrier. What does this mean for you?
Your child is a sickle cell carrier because your child inherited it from a parent. That means that you or your partner is also a sickle cell carrier. Both of you may be carriers. It is also possible that one of you has sickle cell disease, and is already seeing a doctor.
Sometimes you may already know that you, or your partner, is a sickle cell carrier. But not everyone knows. It is important to know if you and your partner are sickle cell carriers.
Your GP can arrange a blood test to find out. If necessary, your GP can then refer you to a clinical geneticist. This is a doctor specialising in genetic disorders.
Why is it important to know if you are a sickle cell carrier?
It is important to know if you and your partner are sickle cell carriers. This is especially relevant if you want to have more children. If the father and mother are both sickle cell carriers, they could possibly have a child with sickle cell disease. Sickle cell disease is a serious and hereditary form of anaemia.oes the blood test show that both parents are sickle cell carriers? Then there is a 1 in 4 chance in every pregnancy that your child will have sickle cell disease.
Father and mother are both sickle cell carriers
Are you both carriers of the sickle cell trait?
- Then you have a 1 in 4 chance in every pregnancy that your child will have sickle cell disease.
- There is a 1 in 4 chance that your child will be healthy and WILL NOT be a carrier.
- There is a 2 in 4 chance that your child will be healthy and WILL be a carrier.
Is one parent a carrier? Or does one parent have sickle cell disease, but the other parent is not a carrier? Then you two will never have a child with sickle cell disease together. However, your child could be a sickle cell carrier. A child who is a carrier will not get the disease.
Either father or mother is a sickle cell carrier
Is one of the parents a sickle cell carrier?
- Then you have a 1 in 2 chance in every pregnancy that your child will be a sickle cell carrier.
- There is also a 1 in 2 chance that you will have a child who is not a carrier and is healthy.
One parent has sickle cell disease and the other parent is not a carrier
Does one of the parents have sickle cell disease? And the other parent is not a sickle cell carrier?
Then all the children will be sickle cell carriers. These parents will not have any children with sickle cell disease.
Where can you get a blood test?
Your GP can arrange a blood test. You get the results two weeks after the test.
What are the possible results?
There are four possible test results:
- You are not a sickle cell carrier.
- You are a sickle cell carrier.
- You are a carrier of a different form of hereditary anaemia.
- You are not a sickle cell carrier, but you do have sickle cell disease.
Frequently asked questions
What should I do if we are both sickle cell carriers?
Are you both carriers? And do you want to have more children? Then your GP can refer you to a clinical genetics centre. The specialists there can help you find answers about carrier status and hereditary conditions.
Are the costs of parental testing at a clinical genetics centre covered by insurance?
Contact a clinical genetics centre for information about the costs. Please be aware that health insurance may not cover all costs. In addition, these tests fall under the parents’ insurance deductible. Check with your insurance company to be sure.
What do the results mean for my family?
Are you a sickle cell carrier? Then your own father or mother is also a carrier. That means that other family members may also be carriers. This includes siblings and cousins. It is important for your family members to know that they may be carriers. They can ask their GP for a blood test to check.
More information to send to your family:
- https://www.pns.nl/en/heel-prick/sickle-cell-trait (this page)
- Or (for Dutch): https://www.pns.nl/documenten/uw-kind-is-drager-van-sikkelcel
How common is sickle cell carrier status?
Many people are sickle cell carriers. This includes about 1 in 7 people who come from Africa, or have an African family background. It also includes about 1 in 100 people who come from countries around the Mediterranean Sea, or have a family background from that area. These countries include Turkey and Morocco.
About 800 children who are sickle cell carriers are born every year in the Netherlands.
Can both men and women be carriers?
Yes. Men and women can be carriers. Both are equally likely to be carriers.
If someone has sickle cell disease or sickle cell carrier status, is it contagious?
No, it is not contagious. Children are born with it, because it is hereditary. There is nothing they can do about it. Sickle cell carrier status has usually been in the family for many years, and multiple family members are carriers. But many families do not talk about it.
Where does sickle cell disease come from?
Sickle cell disease is most common among people who comes from countries where malaria is present, or used to be present. This is because sickle cell carriers are more resistant to malaria. Caution! If you are a sickle cell carrier, or have sickle cell disease, you still need to take malaria medication when travelling to a country where malaria is present. This is important to keep you from getting malaria.
What is sickle cell disease?
Sickle cell disease is a serious and hereditary form of anaemia. If you inherit a gene with a mistake from both parents, you will have sickle cell disease. 30 to 40 children are born with sickle cell disease every year in the Netherlands. It can cause symptoms throughout their lives. They will need regular check-ups by a doctor. People who have sickle cell disease generally do not live as long.
Someone with sickle cell disease suffers from:
- tiredness caused by anaemia;
- regular episodes of bone pain;
- dangerous infections.
- www.erfelijkheid.nl www.sikkelcel-en-thalassemie-expertise.net
- www.oscarnederland.nl: Organisation for Sickle Cell Anaemia Relief (OSCAR), patient organisation in the Netherlands
More information for children
Do you still have questions after reading this information? Talk to your family doctor (GP).