Resources for Families
If your child has a congenital heart defect (CHD), know that you are not alone and that it is NOT your fault. Research shows that 80% of all CHD cases come from pregnancies with
low-risk factors, and only 15-20% of all CHD cases are a result of a known genetic condition.
Most of the time, heart defects have no known cause - it is no one’s fault.
So what can parents do to increase their odds of receiving a CHD diagnosis if their child has one?
Wait.
Book your anatomy scan at the correct time; 18-22 weeks gestation is when your baby is large enough for any anomalies to be clearly visible if they are present.
Download.
Download this pamphlet and take it to your 20 week scan. It contains six, detailed heart scanning points that your sonographer will investigate.
Keep in mind that sonographers in some jurisdictions legally cannot answer any questions or give you a diagnosis, but these points can help to remind your sonographer to be diligent while examining your fetus’ heart.
Focus.
Stay quiet during the scan so that your sonographer can focus on getting all of the detailed measurements during the allotted appointment timeframe.
It’s a big deal.
The 20-week anatomy scan is so much more than finding out what “flavour” of baby you are going to have.
During this scan, your sonographer will be measuring, evaluating, and assessing over 40 different items to ensure that your child is healthy from head-to-literal-toe - INCLUDING multiple views of their heart.
Know the Signs.
Unfortunately, many infants are sent home with undiagnosed heart conditions. Knowing what signs to look for in your newborn could save their life. Think HEART is an initiative created by the charity, Tiny Tickers. Print off this resource and keep it in your hospital bag, or keep it on your fridge for easy access once you return home.
Helpful Links
About Kids Health
This website has comprehensive information on types of congenital heart defects, types of procedures, and surgeries. It was developed by SickKids in Toronto in partnership with BC Children’s Hospital and other children’s hospitals.
BC Children’s Hospital: Children’s Heart Centre
This video gives a tour and overview of heart surgery at BC Children’s Hospital.
Heart and Soul: A Guide to Congenital Heart Disease
This guide was published by the Heart and Stroke Foundation and has extensive information on congenital heart defects.
Knowing But Not Knowing
A guide for parents that find out their baby has heart disease while they’re pregnant.
Tiny Tickers
A UK based Charity with excellent resources for families affected by CHD
Children’s Heart Society Family Program
CHS is an Alberta-based organization which connects parents who are experiencing similar circumstances together or parents that have experience with a specific heart condition to a family that is just beginning their heart journey