A healthy start leads to a healthier life
For over half a century, health care providers have offered newborn screening for phenylketonuria (PKU) to all infants born in Ontario. Newborn Screening Ontario (NSO) now screens for 29 diseases including metabolic and endocrine diseases, sickle cell disease, cystic fibrosis and severe combined immune deficiency. Individually, these diseases are rare, but together, will affect approximately 200 out of 145,000 newborns in the province each year.
NSO is housed at the Children's Hospital of Eastern Ontario (CHEO) in Ottawa, and conducts all of the newborn screening for the province. For detailed information about NSO and the tested diseases, visit the NSO website.
Early detection. Early treatment. Big benefits.
Babies with one of the tested diseases may appear normal at birth and, without newborn screening, might not be identified before irreversible damage has occurred. Most of these babies will not have a family history of the disease. These diseases are associated with recurrent illnesses, developmental disabilities, and death. Early identification allows treatment that may prevent such harmful outcomes. For babies that start to become ill soon after birth, newborn screening may also save valuable time and resources in making a definite diagnosis.
Informed parents. Informed choices.
Health care providers are responsible for ensuring that all babies born in Ontario are offered the newborn screening test. This screening identifies babies who need more testing. It does not provide a diagnosis. Most families want to have their baby screened. However, on occasion, newborn screening may be declined. Health care providers should discuss this decision with parents, and document this in the baby's medical record.
Please note that personal health information will be shared between the health care providers involved in newborn screening and diagnosis so that babies who screen positive receive appropriate care and follow up. As with any health information, families may choose not to share this information. In this case, they should be encouraged to discuss the decision with their health care provider or contact NSO directly.
The Newborn and Childhood Screening Subcommittee
The Newborn and Childhood Screening Subcommittee (NCSC) is a subcommittee of the Provincial Maternal – Child Screening Committee. NCSC provides advice to the Ministry of Health & Long-Term Care and NSO about provincial policies, standards and guidelines for Ontario's newborn and childhood screening programs. The committee has a maximum of 12 members and a chair. Meetings are held at the call of the chair at least three times per year.
For more information on the committee, please visit the NSO website.