Why should a healthy baby have newborn screening?
Newborn screening is important for all babies. A baby can look healthy but have one of the conditions on the newborn screen and need treatment. Newborn screening allows for babies with the conditions to be detected before they get sick. Starting treatment early leads to better outcomes for babies with these rare conditions.
If there is no family history of the newborn screening conditions, does a baby still need screening?
Yes, a baby can still have a condition on the newborn screen even if there is no family history of the condition. A baby can still have a condition on the newborn screen even if all the siblings are healthy.
Can parents decline newborn screening?
The newborn screen is considered standard of care and highly recommended. The newborn screen is not mandatory, and caregivers may choose to decline newborn screening after discussions with a healthcare provider. A form must be filled out and sent to Maritime Newborn Screening if the test is declined.
In the Maritimes over 20 babies a year (approximately 1/700 babies screened) are found to have a rare condition on the newborn screen requiring treatment. Most parents did not know their baby could have one of these conditions. Newborn screening gives these babies the chance to live longer, healthier lives.
Does the heel prick hurt?
The collection of the newborn screen sample can cause discomfort for some babies. Ways to reduce this discomfort include skin-to-skin, breastfeeding, and small amounts of sugar water (e.g., glucose) during sample collection. We only offer tests that we think will benefit babies, and where the benefits of a test are greater than any potential discomfort.
Do parents have to pay for newborn screening?
No, the newborn screen is free for every baby born in the Maritimes, including babies whose parents do not have health coverage.
What happens to the newborn screen sample when the test is complete?
The newborn screening sample is stored in a secure facility during and after testing. At present, samples are kept for 10 years. The main purpose of the sample is for newborn screening. Other possible uses of the sample include laboratory quality control and assurance, and testing of the sample requested by a baby’s healthcare provider to assist in the baby’s care.
How does Maritime Newborn Screening ensure the information is secure?
Maritime Newborn Screening (MNBS) is committed to keeping the sample and information safe and confidential. Strict laboratory processes are in place to process the sample and information. Information is stored in the electronic health record and laboratory information system. The systems are protected by firewalls and password access. A limited number of personnel have access to the health record and laboratory information system. MNBS is located in the IWK laboratory and supported by the robust information technology (IT) structure of the IWK.
Can newborn screen samples be used for research?
If samples or information are requested for research, approval by a research ethics board is needed. Parents would be contacted for consent to participate in any research that did not use de-identified data (where all identifying information is removed, and the data cannot be traced back to the child).
How do parents have the samples returned or destroyed?
Parents can decline the storage and use of blotters by contacting Maritime Newborn Screening by email or phone.
Les information ci-dessus sont présentement mises à jour et la traduction française est actuellement en cours. Pour plus d’information sur le Dépistage néonatal des Maritimes, sur les processus de dépistage néonatal et les résultats, veuillez appeler le 902-470-2783.