Our Mission

Save Babies Through Screening Foundation of Canada (SBTSFC) is a nonprofit organization run by volunteers. Its mission is to improve the lives of babies by working to prevent disabilities and early death resulting from disorders detectable through newborn screening. Newborn screening is a simple test that is performed after birth. The test is performed by pricking your baby's heel and putting a few drops of blood on a special filter paper. The paper is allowed to dry and then sent to the newborn screening laboratory where several different tests will be performed Without proper screening affected children may suffer neurological impairments, physical disability or even death. Most affected children can lead normal, healthy lives when diagnosed and started on treatment early. SBTSFC supports, assists and advocates screening for disorders that are detectable through filter paper newborn screening; are unlikely to be clinically diagnosed without screening; and cause neurological impairments, physical disability and/or death in early childhood when left untreated. Although all babies get a routine newborn screening test, there are two major problems that SBTSFC addresses:

• According to Reuters Health, is that 1 in 3 positive test results is reported late, sometimes after the baby has already died.
• The number of disorders screened varies from province to province.

Comprehensive newborn screening for most of the 55 disorders advocated by SBTSFC have almost no false positives when performed by doctors well experienced in tandem mass spectrometry. Testing is inexpensive, and insurance companies are beginning to cover the cost. Unfortunately there are only a handful of laboratories in the world that are experienced with comprehensive newborn screening, so many doctors simply do not know about recent comprehensive newborn screening advancements or its availability. SBTSFC educates parents and pediatric healthcare providers about comprehensive newborn screening available and the importance of reporting positive test results within 5 days of birth.

Our Objectives

• Improving the Awareness of Disorders Detectable through Newborn Screening
• Improving the Awareness of the Newborn Screening Test
• Facilitating Communication between Screening Programs, Support Groups, and Families
• Improving Newborn Screening Guidelines and Regulations
• Improving Clinical Identification of Affected Neonates
• Enhancing Resources For Newborn Screening Testing and Follow-up Care Programs
• Promoting National Consistency Among Programs

In order to help raise awareness as well as funds for our outreach programs, bracelets bands are now available for sale. Contact us at info@savebabiesacanada.org for more information!

 

Recent Advances in Newborn Screening

Ontario: Screening for Sickle Cell Disease and other Hemoglobinopathies began November 25, 2006. Following in Alberta's footsteps, the Ontario Ministry of Health announced that it was expanding its newborn screening program to include Cystic Fibrosis (CF). Screening for CF is scheduled to begin in late 2007.

Alberta: On September 28, 2006 the government of Alberta announced that the newborn screening program that was being pilot tested in the Calgary Health Region was going to be expanded to the entire province. In addition, the government announced that it was expanding it's program to include 13 new disorders. The expansion will be completed by April 1, 2007. The new disorders include Medium-chain acyl-CoA dehydrogenase deficiency (MCAD), Trifunctional protein deficiency (TFP), Carnitine uptake deficiency (CUD), Long-chain 3-OH acyl-CoA dehydrogenase deficiency (LCHAD), Very long-chain 3-OH acyl-CoA dehydrogenase deficiency (VLCAD), Congenital adrenal hyperplasia (CAH), Citrullnemia (CIT), Maple syrup urine disease (MSUD), Glutaryl-CoA dehydrogenase deficiency / glutaric aciduria type 1 (GA 1), Isovaleric academia (IVA),3-hydroxy 3-methyl glutaric aciduria (HMG), Methylmalonic academia (Mutase) (Cbl A,B) (MMA), and Propionic academia (PA).

New Brunswick: This summer (2006), the government of New Brunswick is expanding its newborn screening program to add 9 additional genetic diseases - Carnitine Reuptake Deficiency (aka Carnitine Uptake defect), Carnitinepalmitoyl Transferase Type I and II (CTP I and II), Carnitinepalmitoyl Translocase Deficiency (CTL), Glutaric Acidemia Type I and II (GA I and II), Isovaleric Acidemia, Long Chain Hydroxy acyl-CoA Dehydrogenase Deficiency (LCHAD), Maple Syrup Urine Disease (MSUD), Medium Chain Acyl Co-A Dehydrogenase Deficiency (MCADD) and Very Long Chain acyl-CoA Dehydrogenase Deficiency (VLCAD). New Brunswick current screens for PKU and Congenital Hypothyroidism (CH).

Newfoundland and Labrador: This summer (June-July 2006), Newfoundland and Labraror's newborn screening program was expanded to include Medium Chain Acyl Co-A Dehydrogenase Deficiency (MCADD) and screening for Homocystinuria to all regions.

To learn more about these announcements, please check out the News/Events page. Checkout the provincial newborn screening table to compare newborn screening programs between provinces as well as to learn more about the screening program in your province.

To discuss and share information regarding newborn screening in Canada, please consider joining the Canadian Newborn Screening List Serve.

Research Project Looking for Participants

The University of Ottawa is currently conducting a genetics research study and the University of McMaster is interested in interviewing parents about newborns screening program management. To find out more, please check out the News/Events page.

Family Stories:

A new family story has been added. Please take a few minutes to read Vayda's story.

Our Web site:

We make ever effort to ensure the information on this site is current. Please watch our site for updates and new materials. If you have any comments or suggestions about the information found on this website, please contact us (webmaster@savebabiesacanada.org)

You will need Adobe Reader to open many of the documents on our web-site. To download a free copy, click here.

The webmaster! February 1, 2007