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Newborn Screening

Newborn screening is a simple blood test to identify babies who may have one of 24 treatable disorders. A newborn baby can look healthy but have one of these rare disorders.
If not treated, these 24 disorders can cause:

  • severe mental handicap;
  • growth problems;
  • sudden infant death; and 
  • other health problems.
Early detection allows for treatment that may prevent or greatly reduce these problems.  

Every newborn baby born in BC and Yukon qualifies for screening. Newborns are screened between 24 and 48 hours old, either in hospital or at home. There are about 40 babies born each year (one out of every 1,000) who are found to have one of these rare disorders.

Frequently Asked Questions (FAQs)

Why is my baby screened?

A small spot of your baby’s blood can be used to get important information about his or her health. A newborn baby can look healthy but have a rare and serious disorder that you and your doctor or midwife may not know about. Newborn screening finds babies who may have one of a number of these rare disorders. When these disorders are found and treated early, the chances of serious health problems are prevented or reduced later in life. If not treated, these disorders can cause severe mental handicap, growth problems, health problems and sudden infant death.


How is my baby screened?

Your baby’s heel is pricked and a few drops of blood are taken and put onto a special card. Your baby may cry, but taking the blood sample does not harm your baby. You can help your baby by holding and breastfeeding her or him while the blood is being taken. The blood sample is sent to the laboratory at BC Children’s Hospital for testing. The same blood sample is used to screen for all disorders.


What happens to my baby’s blood spot card when the testing is complete?

When testing of the blood sample is completed, the card with the leftover blood is kept in secure storage by the BC Newborn Screening Program. Please see our Blood Spot Card Storage & Use FAQs page for more information.


What if my baby goes home from hospital before 24 hours old?

A blood sample will be taken in the hospital before leaving. Over 80% of disorders can be screened using this blood sample. You will be given instructions on how to have the sample repeated within 2 weeks. The purpose of the second sample is to double check the few disorders that can be missed on the first (early) screen.


Can I wait and have my baby tested later?

The earlier these treatable disorders are found, the better the outcome for babies with these disorders. It is strongly advised that your baby not leave the hospital without a blood sample being taken. If you decide you do not want your baby to have a blood sample taken before he or she leaves the hospital, you will be asked to sign a form to show you understand the reasons for the test and the possible outcome for your baby if your baby is not tested and has one of these disorders.


If your baby is under the care of a Registered Midwife, the midwife may review options with you to have the blood sample drawn at home.

 

How do I find out the results of the screening?

Your baby’s screening results are reported to the hospital where your baby was born. It is not often, but if the results show that further testing is needed, your doctor or midwife will be notified.


What does it mean if the screen is negative?

A negative screen means that the chance that your baby has one of these disorders is very low. Very rarely, the test may miss a baby with one of these disorders.


What does it mean if the screen is positive and what happens next?

A positive screen tells that there might be a problem. It does not mean that your baby has one of these disorders, but it is possible. More tests are needed.

 

Which disorders are included in newborn screening?

In British Columbia, babies are screened for 24 rare but treatable disorders.


Will screening for these disorders find anything else?

Screening for sickle cell disease and cystic fibrosis may also tell if your baby is a carrier (also referred to as having a “trait”) for one of these disorders but does not have the disorder. Babies who are carriers are healthy and no more likely to get sick than any other baby. They do not need any special medical treatment. Traits will not change into a disease later on. 

To find out what it means for your baby, yourself, and your family if your baby is a carrier, download the information sheets on specific traits.


What if the results show that your baby has one of the disorders after all the tests are done?

Your baby will need treatment from a doctor who specializes in the disorder. You will be referred to a specialist right away. Treatment can start in a few days.


What if your baby is a carrier?

Screening for different diseases may tell if your baby is a carrier. This is also known as having a trait for one of these disorders. Babies who have these traits are no more likely to get sick than any other baby. They do not need any special medical treatment. For more information, download the following information sheets:


Blood spot cards are used to benefit babies and children in BC even after the newborn screening tests are complete. This page provides information on the use and storage of blood spot cards. It also provides information for the parent(s) and/or legal guardian(s) who may not want their baby’s blood spot card to be used for these purposes.


How is blood collected for newborn screening?

A baby’s heel is pricked, and a few drops of blood are taken and put onto special filter paper. The filter paper is attached to a larger card called a blood spot card. When the blood samples are dried, the card is sent to the newborn screening laboratory at BC Children’s Hospital for testing. 

The tests help to find babies who may have one of a number of rare and serious disorders. When these disorders are found and treated early, the chances of serious health problems are prevented or reduced later in life. If not treated, these disorders can cause severe mental handicap, growth problems, health problems, and sudden infant death.


What happens to the blood spot card after the newborn screening tests are done?

After the tests are done, a very small amount of dried blood is left on the card. The amount left depends on how much blood was collected and whether more tests were needed to make sure the results were accurate. The amount left is usually smaller than a dime.

The BC Newborn Screening Program stores the cards with the leftover blood sample for 10 years. This is consistent with the period of time in which the card has any potential clinical use. Cards are stored in one of two secure locations: BC Children’s Hospital laboratory storage or off-site storage.

Blood spot cards may only be requested from storage by the Director and senior staff of the BC Newborn Screening Program. All staff that access stored cards have received training in data privacy.


Why keep blood spot cards after the newborn screening tests are done?

Blood spot cards are kept for clinical purposes such as:

  • Re-running a test if the first test result was not clear. This means the test can be repeated without having to get another blood sample from the baby.
  • Trying to find the reason for a health problem that has developed later in a child’s life or trying to find the cause of an unexplained illness or death of a child. Sometimes testing the leftover blood spot sample will help to find the cause. In these cases, testing would only be done with the consent of the parent(s) or legal representative(s).
  • Checking the quality of testing done by the laboratory to make sure that results are accurate.
  • Developing better tests for the disorders currently screened or for developing new tests to screen for other treatable disorders.

Are blood spot cards ever used for health research?

Yes, a few studies have been conducted on stored blood spots. In all cases, stored blood spot samples were anonymized meaning that all the information that identifies the baby (e.g., name, personal health number, and date of birth) was removed to protect privacy in accordance with the BC Freedom of Information and Protection of Privacy Act (FIPPA). All research projects have been approved by a Clinical Research Ethics Board to ensure high ethical standards.


There is great potential to advance science and clinical care for newborns and children utilizing stored blood spots for health research. Public health research contributes to the public good through increased scientific knowledge.


Are baby's blood spot cards ever released to third parties?

Blood spot cards are treated the same as hospital records or medical files held by doctors and hospitals in relation to the powers of the Court. On rare occasions the Court or other legislative authority (e.g., Coroner’s Act) may order access to a blood spot card or related information. Without legislated authority, blood spot cards are not released to third parties. 


Can a baby have the newborn screening test done but not have the leftover blood card stored with the BC Newborn Screening Program?

Yes. Parent(s)/legal guardian(s) who do not wish their baby’s blood spot card to be stored with the BC Newborn Screening Program may have the card destroyed.

Parents/legal guardians who wish to have their baby’s blood spot card destroyed must sign a form called a Directive to Destroy Leftover Newborn Screening Blood Samples. The signed form is sent to the BC Children’s Laboratory with proof of identity.


Once a directive to destroy a card is received, the NBS laboratory separates the filter paper containing the blood spots from the blood spot card. The filter paper and blood spots are destroyed. A letter is sent to the parent(s)/ legal guardian(s) to tell them the blood spots have been destroyed. Destroying the card means that the card will no longer be available for any purpose, including further tests if the baby or child develops an illness later in life.


Both parent(s)/legal guardian(s) must sign the request to return or destroy their baby’s card. If the baby has only one parent/legal guardian, that parent/legal guardian must sign the form to say they are the only parent/legal guardian.


Occasionally, parent(s)/legal guardian(s) may request to have their baby’s blood spot card returned. This would require completion of the Release of Leftover Newborn Screening Card form. The signed form needs to be returned to the Newborn Screening Lab (either via fax or mail). The Newborn Screening Program will retrieve the card from storage and contact the parent(s)/legal guardian(s) when it is ready for pick up. Parent(s)/legal guardian(s) must come to the BC Children’s Laboratory with proof of identity to pick up the blood spot card. Returning the card means that the card will no longer be available to the Newborn Screening laboratory for any purpose, including further tests if the baby or child develops an illness later in life.



 

Parent Information Sheet

Download the Parent Information Sheet: A Simple Blood Test Could Save Your Baby’s Life

The Parent Information Sheet is also available in the following languages:






SOURCE: Newborn Screening ( )
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