New diagnosis

Has your child recently been diagnosed with congenital or acquired heart disease?

Family members often have many questions about their child’s heart condition and care needs. An individual consultation with a Children’s Heart Centre nurse clinician or clinical nurse specialist can provide:

detailed information about your child’s heart condition
a discussion and written information on planned diagnostic tests and procedures
a review of how to optimize your child’s care, both before and after surgery
information on when to seek additional medical attention for your child
information and referrals to hospital and community support services
links to reliable websites for further information on specific forms of heart disease
opportunities for connections with resource parents available for parent-to-parent support through Children’s Heart Network
information about upcoming conferences, youth events and family support services
help with infants and children who have difficulty feeding or gaining weight, due to some forms of congenital heart disease. Members of the Children’s Heart Centre health care team including dieticians, nurses, occupational therapists and lactation consultants are available for individual consultation and support
one-to-one consultation and written information on any medications that have been prescribed, including proper administration, side effects, and monitoring requirements
information and support concerning additional medications or immunizations to decrease the risk of certain infectious diseases such as Respiratory Synctial Virus (RSV)
additional support to meet developmental milestones - the health care team is available to discuss these concerns with you and to refer you to appropriate hospital and community services

For more information see Heart and Soul.

Antenatal diagnosis of child heart disease

There are many types of support available to families who receive an antenatal diagnosis of congenital heart disease. Families generally meet with a pediatric cardiologist, cardiac clinical nurse specialist, and members of the perinatal team at the time of an antenatal diagnosis of a congenital heart defect. They are available to provide ongoing support throughout the pregnancy. Additional education and support is available including:

information and support on planning for the baby’s birth and coordinating appropriate services
guidance about the medical care the baby will require after birth may include hospital tours, meetings with the cardiac surgical team, and coordination of out-of-province care, if required.

“Knowing But Not Knowing” is an educational booklet developed by members of Children’s Heart Centre for families experiencing an antenatal diagnosis of child heart disease. This resource is available through the Family Resource Library.

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