Approach

Parents and health professionals are tasked with balancing the health needs of their child/ tamaiti and with thinking about their child’s/tamaiti’s right to have agency over their own bodies. This means gaining understanding about what is essential for your child/tamaiti now and what may be delayed until your child/tamaiti becomes a young adult/rangatahi. This would give them the opportunity to choose to consent to what happens to their body.

Healthcare needs may, in time, require you to evaluate risks of organ dysfunction, cancer, incontinence and future potential for fertility. 

Options for healthcare may be straightforward depending on your child’s/tamaiti’s variation. It is best to find out what the options are for your child’s/tamaiti’s specific variation as they will all have different variables to consider. In some instances, there is limited robust research as to outcomes for a number of interventions. This includes timing of interventions, that is, whether to do them early or later or some would say not at all.

This is where things can become complex and confusing especially if opinions vary between those you speak to or read about from online VSC peer based support. Take your time, don’t rush, gather as much detail as you can from a variety of sources, health professionals and VSC support groups. Remember it is alright to ask for a second opinion, whether that be from a doctor or a parent with lived experience. Seek out information that balances different opinions so you can weigh the pros and cons. Make sure the information is specific to your child’s/tamaiti’s VSC.

Issues around whether to delay a treatment so your young person/rangatahi can decide for themselves what happens to their body are challenging, as it is hard to know what is best especially in the absence of robust outcome data. These decisions are always difficult.

It is important to be aware that guidelines for best practice treatment protocols from both a medical and human rights perspective are always evolving, not just here in Aotearoa/NZ, but internationally.

We hope this guide can help you think about these issues further based on the voices of what young people in our research discussed and hoped their parents would take into consideration.