For Families

Receiving the diagnosis of having a disorder of corpus callosum is a life changing moment.  You are thrown into a new and scary world, a world full of unknowns.

The diagnosis can come as part of a routine prenatal scan, a normal part of pregnancy where the new parents get a look at their soon to be born baby.  In one sentence your normal pregnancy " We have found something about your baby's brain in the scan."  your normal pregnancy changes and your dreams are shattered.  Most people don't hear much after such a statement, you go into shock.

The diagnosis can come after your baby is born early and as part of a routine head scan in the intensive care nursery, the scan doesn't find the dreaded brain bleed but something else, your newborn is missing part of their brain.  The NICU rollercoaster plunges to a new low.

The diagnosis can come after you raise concerns about your baby's or young childs development.  They might not be meeting milestones.  Slow to walk, slow to talk, seems to have muscle tone issues, your doctor sends your child to have a MRI on their brain just to make sure there is nothing wrong.  And the finding confirm your worst fears, there is something in their brain that isn't there.

The diagnosis can come after many years of struggles, slight or major, it can come as an incidental finding after having an MRI for other reasons and for some that diagnosis answers so many questions and creates many new ones.

In this section of our site we hope you can find some of the answers you are seeking. The information in this section has been put together to help families on the journey after receiving the diagnosis of a disorder of the corpus callosum.