This section of the guide explores the process of navigating your thoughts and feelings, when trying to make decisions for your child/tamaiti. Some decisions may be simple and some more complex.
Every parent’s situation will be unique to their child/tamaiti; consequently we can’t tell you what to do, nor would we attempt to. What we can do is provide some common themes that were reported to us by participants in our research.
We want to acknowledge finding out you have a child/tamaiti with a VSC can be challenging at times and knowing what to do can be complex and confusing. There can be a number of options and diverse opinions about which way to proceed, adding to the confusion. Parents themselves can have different points of view as well as health professionals. This is also true for adult people with lived experience who you may access online through peer support groups. It is important to remember and respect that even though points of view may differ between people they can all be valid points of view.
This next section explores what is happening at the point you find out that your child/tamaiti has a VSC. We express some ideas about what might be helpful to consider when moving forward into discussing treatment options for your child/tamaiti.
BACKGROUND