IMPORTANT NOTIFICATION (March 2020)
In light of the COVID-19 pandemic and discontinuation of non-essential services, the Infant Hearing Program (IHP) is postponing all audiometric hearing screening and is temporarily unable to obtain consent for risk factor screening for PHL. After careful review by the Ontario Ministries of Health (MOH) and Children Community and Social Services (MCCSS), a decision was made to continue with the risk factor screening program. All specimens from babies born on or after March 26, 2020 will be screened for CMV and genetic risk factors for PHL without the need for additional consent by the IHP. Screen positive results continue to be referred for medical and audiologic follow-up. These are temporary measures, and we will revert to our original consent practice as soon as the IHP returns to regular operations. Please contact NSO if you have any questions.
What is hearing screening?
Hearing screening identifies babies at risk for hearing loss as early as possible. It is considered standard of care for all babies born in Ontario. Every year nearly 4 in 1,000 babies are born deaf or hard of hearing in Ontario. Through hearing screening these babies can be found early and given the help they need to develop language. For more information about the Ontario Infant Hearing Program, please visit: http://www.ontario.ca/infanthearing
What is risk factor screening for Permanent Hearing Loss (PHL)?
All babies who have hearing screening are offered risk factor screening for PHL using the sample already collected by the hospital or midwife for routine newborn screening (the heel prick test). This screening is offered at the time infant hearing screening is done, or when it is booked. Testing is performed by Newborn Screening Ontario (NSO) and specifically looks for Cytomegalovirus (CMV) infection and some common genetic risk factors for PHL. Babies with these risk factors have a higher chance of having PHL at birth or of developing it in early childhood and, when found through screening, can be connected with the appropriate audiology and medical follow-up.
What are the potential benefits of risk factor screening for PHL?
Risk factor screening for PHL identifies babies who are at increased risk to have PHL at birth, or to develop it in early childhood. Babies with risk factors for PHL identified through screening are offered a diagnostic audiologic assessment with an IHP audiologist, and ongoing monitoring if PHL is not identified. The goal of risk factor screening for PHL is to find babies with PHL as early as possible so they can be provided with the supports and services they need through the Infant Hearing Program (IHP) to support the development of language and communication.
Are there any reasons not to have risk factor screening for Permanent Hearing Loss (PHL)?
There is no right or wrong choice when it comes to a parent or guardian’s decision about risk factor screening for PHL, and some may decide not to have their baby screened.
If a baby has risk factor screening, parents could learn that their baby has a congenital Cytomegalovirus CMV (cCMV) infection. Most babies with cCMV will not develop any health problems related to the infection. However, some will develop permanent health issues, most commonly hearing loss. At the moment there isn't a good way of knowing if or when a baby with cCMV will develop hearing loss. This means that some babies with cCMV may get extra monitoring and checkups and no health issues related to the infection would be identified.
If a baby has risk factor screening, parents could learn that their baby has genetic risk factors for PHL. Babies with these risk factors have a high chance of having PHL at birth or of developing it in early childhood. Some babies with a positive genetic risk factor screening will need to have their hearing checked more often throughout early childhood. A small number of babies with a positive genetic risk factor screening result never develop PHL.
Some parents might feel that the extra monitoring involved when a baby has a positive risk factor screen for PHL could give them reassurance, because it would enable the earliest possible identification of hearing loss. Other parents might feel that the extra monitoring could make them more worried about their baby’s chance to develop hearing loss.
Does a parent's decision about risk factor screening for Permanent Hearing Loss (PHL) affect other screening tests for the baby?
No. Newborn screening is considered standard of care in Ontario. The vast majority of babies born in Ontario get a newborn screen for the purpose of checking for the potential of a variety of rare, but treatable diseases. The sample collected for newborn screening would be used for risk factor screening for PHL only with parental/guardian consent, which is obtained at the time hearing screening is performed, or when it is booked. Risk factor screening for PHL is only available to babies who have hearing screening through the Infant Hearing Program (IHP).
Can parents who want risk factor screening for Permanent Hearing Loss (PHL) be confident that a newborn screen was collected in the baby?
In Ontario, most babies have a newborn screening sample collected within 24-72 hours (1 to 3 days) after birth. Newborn Screening Ontario also contacts the birthing hospital and/or midwife about one week after a baby’s birth to follow-up on any babies who may not have had a newborn screening sample collected yet. This helps ensure that no babies whose parents wished them to be screened are missed.
If you are concerned that a sample may not have been collected for your baby, please call us at 1-613-738-3222. While Newborn Screening Ontario will not release screening results to parents by phone, we can confirm if a sample was received and arrange to send results to the baby’s doctor.
If a parent changes their mind about risk factor screening for Permanent Hearing Loss (PHL), who should they contact?
A parent/guardian who declined risk factor screening for PHL for their baby should contact their regional Infant Hearing Program if they change their mind and they would like their baby to be screened.
A parent/guardian who consented to risk factor screening for PHL for their baby but changes their mind should contact Newborn Screening Ontario directly for information about next steps. Once the risk factor screen is requested, results are usually available within 1-2 days. Therefore, depending upon how much time has passed, it is possible that testing may have already been completed.
Can a baby who did not have a newborn screen collected have risk factor screening for Permanent Hearing Loss (PHL)?
No. Risk factor screening for PHL involves using the newborn screening sample for testing. If newborn screening was not performed for a baby, for example if the baby’s parent or guardian declined, Newborn Screening Ontario would not have a dried blood spot sample to be able to perform the risk factor screening for PHL.
Can a baby who was not born in Ontario have risk factor screening for Permanent Hearing Loss (PHL)?
If a baby was born outside of the province, a parent/guardian should contact the Infant Hearing Program in their region and/or speak to their baby’s health care provider for more information about whether the baby can have hearing screening. Risk factor screening for PHL is only available to babies whose parents/guardians consent to infant hearing screening in Ontario.
If a baby is over 3 weeks old when they arrive in Ontario, risk factor screening for PHL will only include screening for genetic risk factors. Screening for congenital Cytomegalovirus (cCMV) infection will not be performed because the test is not reliable when using a dried blood sample collected from a baby who is over 3 weeks old.
Can a baby without OHIP have risk factor screening for Permanent Hearing Loss (PHL)?
Risk factor screening for PHL is only available to babies whose parents/guardians consent to infant hearing screening in Ontario. Contact the Infant Hearing Program in your region, or speak to your baby’s health care provider for information about whether hearing screening is available.
How long do results of risk factor screening for Permanent Hearing Loss (PHL) take to get back?
Screening results should be available between 1-2 weeks after the request for testing is received. Results are sent to the Infant Hearing Program in the region in which the baby was screened. Results can be sent to a baby’s health care provider upon request.