The purpose of genetic testing is really quite simple: discover a genetic cause for your child's symptoms and medical/health challenges.
However, the familial discussion around genetic testing, in most cases, is not as simple.
For us, our family members are good people, caring for our son with love as deep as the sea.
So it wasn't surprising that there can be anxieties about what exactly is 'wrong', and where -- or who -- the problem came from.
If you are one of the families who do decide to pursue the tests, remember, while family support can be found just around the corner, it may not be there immediately when there are still lots of questions and raw emotions.
When you can help your family understand that genetic testing isn't about assigning blame, the conversation can open into a healthy, safe place to be for all parties.
So, how can you do this? What can you say?
Is there a way to clearly summarize the "why" of genetic testing?
1. An identified genetic mutation can help care teams provide surveillance for your child's health. It can significantly minimize excessive and unnecessary tests in the future, which can be painful, traumatic, invasive, and expensive.
2. While there is never a crystal ball, genetic testing can help lift just a bit of the fog in the future. For families with endless doctor visits, specialists, and therapy appointments, even a little candle in a dense darkness can provide a relief. It can also be helpful when planning for schooling, home care, and equipment.
3. Genetic testing can open the door to social groups and community services once a condition is identified. A kind word of encouragement from a family traveling the same journey can be powerful.
4. Genetic testing can expose additional health concerns for the parent and child that would otherwise not be identified via annual exams or traditional physician visits. In addition, it can open the door to research tests and trials that are pertinent to your case.
5. If you are still in the midst of family planning, genetic testing can give you a better idea of the liklihood if a severe condition would be repeated in future children. What you choose to do with that information is up to you and your spouse.
Try to help family members realize it isn't about finger pointing: it's about a little boy or girl and the lives you share ahead, together.
It's about the future, about health and care, and about peace of mind.
It should always be done in your child's best interest.
You are making a decision out of love - and no one can argue with that.
Is your child continent and aware of when they need to use the toilet?