This section was written with the help of Heidi Shapiro, social worker in the cardiology department at CHU Sainte-Justine.
Following the announcement of the diagnosis, it is normal for a parent of a child with heart disease to be in shock. The first step to take is to give yourself time to digest the news so that you can approach the situation as calmly as possible. To facilitate the acceptance process and to ease your mind, it is recommended to ask a lot of questions to the hospital staff who are more than willing to answer them and even encourage parents to write down all their questions so that they have them on hand during the meeting with the doctor.
Following the diagnosis, parents will feel a lot of different emotions: fear, sadness, uncertainty, anxiety, etc. You must understand that all of this is normal. It is essential to know how to talk about it to those around you and to accept their support. If necessary, it is also possible to call on a social worker, who can play the role of companion and confidant. The social worker can also tell you about the resources available to families with children with heart disease, such as the provincial allowance for handicapped children, the federal tax credit, the transportation-accommodation program, and more (on this subject, see the section “Financial Support” by clicking here).
Siblings may also have difficulty acclimating to the arrival of a newborn, especially if they are sick and require special treatments. To this end, En Cœur offers a colouring book that allows children to better understand the new situation. As always, it is also possible to seek help from the medical team, who have the necessary resources and knowledge to facilitate acclimatization.
For parents, En Cœur has prepared a short guide to prepare them for their child’s heart surgery and answer some of their questions. It is possible to consult “Mon enfant et sa chirurgie cardiaque” online (available in French only).
