Finding out
“We found it helpful when the doctor put us in contact with another parent.”
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 everyone’s situation is unique, and even though points of view may differ between people they can all be valid points of view.
Parents often feel overwhelmed in the first instance, which is totally understandable when you are informed your child/tamaiti has a VSC. Like any news given in a health context it can come as a shock and induce anxiety, confusion and a sense of fear. Some parents may even experience a sense of loss or grief for the child/tamaiti they were expecting. These are all natural feelings and something that your health professional can help you process.
It is important to take a deep breath, take stock of what you know, which may be little as most of us have not heard about VSC before now. Is your child/tamaiti healthy and well in this moment? Then think about what you need to know.
Get support early
The most important thing to do is to get support early. Ask for as much information as possible so you can make an informed decision about what having this particular variation means for your child/tamaiti and for you as parents.
Take the time you need to become informed.
“We found it very reassuring that other parents felt as we did.”
Talk with people you trust and feel safe and supported by. Ask to talk to other parents who have lived experience of having a child/tamaiti with a VSC. Sometimes health professionals can help you access other parents or you can try through online VSC support groups.
Take time to consider not only what this means for your child/tamaiti now but for their future.
DECISION MAKING