Newborn tests in Canada: the heel prick, heart and hearing checks

What happens in the first two days

Newborn screening in Canada is delivered provincially, so the exact disease list depends on where your baby is born. The method and the timing are consistent across the country: a few drops of blood are taken from your baby's heel and spotted onto a screening card. The optimal window is 24 to 48 hours after birth, which is why babies discharged very early are sometimes asked to come back.

This is separate from any screening you had during pregnancy. Antenatal screening estimated the chance of certain conditions before birth; newborn screening looks for treatable conditions in the baby who has now arrived, most of whom look completely healthy.

Ontario, as the worked example

Newborn Screening Ontario, based at the Children's Hospital of Eastern Ontario in Ottawa, does all of the province's screening. The dried blood spot covers six groups of diseases:

• metabolic diseases, where the body cannot break down fats, proteins or sugars
• endocrine diseases, where hormone production is too high or too low
• sickle cell disease
• cystic fibrosis
• severe combined immune deficiency
• spinal muscular atrophy

Two more tests use different methods. Critical congenital heart disease is screened by pulse oximetry at the bedside, with results available right away. Biliary atresia is screened by the parents: you are given an Infant Stool Colour Card at discharge, or by your midwife or doctor, and compare your baby's stool colour against it. It is the first parent-led screen in the programme, and it only works if you actually use the card.

In collaboration with the Ontario Infant Hearing Program, the same blood sample is also used to screen for risk factors for permanent childhood hearing loss. That part is only done with a parent or guardian's consent, so you will be asked about it separately.

How likely is any of this

About 350 of the 143,000 babies born each year in Ontario — roughly 0.24%, or 1 in 350 — will have one of the diseases screened for. Most will have no family history and will appear entirely normal at birth. Fewer than 1% of babies screen positive and need further testing.

Reading the result correctly

A screening test does not diagnose anything. It sorts babies into high risk, called screen positive, and low risk, called screen negative. A screen positive result means further testing, not a diagnosis.

You will only be contacted if something needs to happen. If your baby screens positive, a specialised follow-up centre in your region will contact you to arrange testing. You will not be contacted for a negative result, so no news is genuinely good news here. Occasionally a first sample cannot be tested — too little blood, or another problem with the card — and you will be asked for a repeat. That is not a positive result and does not mean anything is wrong.

Quebec, and a change that catches repeat parents out

Quebec runs its own programme. Blood is taken from the heel by a nurse or midwife between 24 and 48 hours of life, in hospital or at the birthing centre, and it is free to all babies born in Quebec. It screens for 11 diseases, with spinal muscular atrophy and severe combined immunodeficiency added on 11 December 2023.

Here is the change worth knowing about. Quebec used to run a second, urine-based screen collected by parents on blotting paper in the nappy at around three weeks. Since 28 April 2025 that urine screening is no longer done. Screening is now carried out exclusively by the heel blood sample. If you had a baby in Quebec before 2025 and are waiting for the urine kit, it is not coming.

Quebec also offers newborn hearing screening to all babies covered by its health insurance plan, aiming to detect hearing loss within the first month. It is recommended but voluntary.

You can decline, and what that means

Screening is considered the standard of care for every baby, but it is not mandatory anywhere in Canada. In Ontario, a health care provider should discuss the decision with you, document it, and complete the decline form on the newborn screening card. In Quebec you give verbal consent when the sample is taken, and if you refuse you will be asked to sign a form confirming it.

Screening has real limitations. A condition can be present and missed, a result can take several visits to confirm, and a baby can be given precautionary treatment while further tests are pending. Those are arguments for understanding the programme, not for skipping it: the whole point is starting treatment before irreversible damage occurs.

What happens to the sample afterwards

The dried blood spot card does not disappear once the result is issued. In Ontario, samples are stored in a secure facility as part of your baby's medical record, and the programme publishes its policies on storage, privacy and any secondary use. Quebec sets out its own rules on sample storage and protection of privacy.

This is worth two minutes of your attention rather than none. Retained samples are what allow a result to be re-checked if a child later becomes unwell, and they are also what quality assurance depends on. If you have concerns about retention or secondary use, the programme in your province is the place to ask, and both the Ontario and Quebec programmes document the position publicly rather than on request.

Where to get help

Results go to the hospital or midwifery practice that sent the sample, so that is who to ask first. Newborn Screening Ontario publishes the full disease list and a results request route for Ontario families. In Quebec, the blood screening centre at the CHU de Quebec — Universite Laval handles enquiries. Your midwife, family doctor or paediatrician can chase a missing or repeat result on your behalf.