Sickle Cell Carrier Results | Newborn Screening Ontario

In Ontario, newborn screening tests for sickle cell disease. Screening may also find babies who are carriers of sickle cell disease and some other hemoglobin diseases. A carrier does not have, and will not develop, a hemoglobin disease.

Learning your child’s carrier status is optional. Your child’s hemoglobin disease carrier status is not part of your child’s main newborn screening report but can be requested from Newborn Screening Ontario (NSO).

You may or may not wish to learn if your child is a carrier of a hemoglobin disease from newborn screening. The purpose of this information is to help you decide if you want these results. You can also talk with your child’s health care provider before making a decision.

Learning your child's carrier status

Reasons for knowing

1. Your future pregnancies

If a child is a carrier, it is almost certain that at least one of the parents is also a carrier. More rarely, both parents could be carriers. If both parents are carriers, there is a 1 in 4 (25%) chance in each future pregnancy that they could have a baby with a hemoglobin disease. Most carriers do not experience any health problems.

2. Your child's future children

Some parents choose to learn their child’s carrier result so that they can tell their child this information in the future when he or she is planning their own family.

3. Informing other family members

If a child is a carrier of a hemoglobin disease, it means that other family members (i.e. brothers, sisters, aunts, uncles, cousins) may also be carriers. There is also a small chance they could have a hemoglobin disease.

4. Health issues for your child

Most carriers of a hemoglobin disease do not experience any health problems related to being a carrier. Rarely, carriers can experience health issues, most that are minor.

Reasons for not knowing

1. Learning this result is not urgent

Carriers of hemoglobin diseases usually do not have any health problems in childhood. Some parents wait until their child is old enough to make their own decision whether to learn their carrier results.

2. Increased worry

Some parents say that learning their child was a carrier made them worry about their child’s health or treat their child differently, even though their child did not have a higher chance to have any health problems.

3. Carriers of certain hemoglobin diseases (for example, thalassemia) are not detected on the newborn screen

Only carriers of sickle cell disease, hemoglobin C, hemoglobin D, and hemoglobin E are detected.

4. It is not necessary to learn your child's carrier result if you want to know your own carrier status

You and/or your partner may be a carrier of a hemoglobin disease even if you child is not. If you/your partner are from a part of the world where hemoglobin diseases are more common, speak with your health care provider about carrier testing.

5. There are other ways to find out your child's carrier status besides the newborn screen

A blood test to find out if a child is a carrier of a hemoglobinopathy can be performed at any age by their health care provider.

6. Non-paternity

If a child is found to be a carrier, the parents are usually offered carrier testing to determine if either of them are also carriers. This testing could indicate that the person thought to be the child’s father, is not actually the biological father.

If you are considering learning your child's carrier status, click here to review our fact sheet [610.09 KB].