The thought of having a child born with a brain abnormality never entered my head when I was a 21 year old new graduate nurse and had just found out I was pregnant. After the initial shock and stress of telling my family I was going to be a mum, my boyfriend Evan and I were ready and excited to tackle parenting.

The pregnancy was going well until we had our first scan at 19weeks. Naively, this scan was to find out the sex of our baby rather than screen her growth and development. We were thrilled to find we were going to have a daughter; however, our excitement didn’t last long. We were devastated when the sonographer suggested she had detected a brain abnormality; her ventricles were enlarged. Our rollercoaster had begun…

Over the next months, there were many tests, scans and appointments. Nothing was concrete, no one could give us answers. We didn’t know why her ventricles were enlarged and if it was impacting her growing brain.

Madison was born healthy at term and was perfect in every way.

At around 6 months old it became obvious her head wasn’t growing as it should have. Her head circumference at birth was on the 50th centile and by 6 months it was below the line, she had microcephaly.

Many more appointments, specialists and genetic tests were undertaken. While I was worried, I was so reassured by her developmental milestones. She was tracking as she should have, maybe a few weeks behind but she was well and truly progressing. She was the happiest baby I have ever met even to this day.

Finally, at 18months of age our neurologist suggested an MRI. I was happy to go along with the exercise but was convinced it wouldn’t shed any light on her microcephaly or enlarged cerebral ventricles. Ironically, the first time I heard the term agenesis of the corpus callosum was whilst waiting for Madison’s MRI. We met a lovely family with a then 5-year-old daughter. This family very eloquently explained their daughter’s brain disorder. You can imagine my disbelief when the diagnosis of P-ACC was given a few days later.

Over the coming years we were falsely reassured that Madison’s diagnosis was an incidental finding, ‘she is fine’ we were told. And she was, she was keeping up with her peers and appeared as a happy, healthy preschooler. So much so at the advice of our paediatrician we didn’t tell her school about her diagnosis.

School was the beginning of a new rollercoaster. Maddy started ok but did struggle with reading and writing. She got a little extra help in class but she still progressed. It wasn’t until late year four the wheels fell off. Maddy, a compliant, eager to please child was riddled with anxiety. She was so stressed she started chewing her hair and hiding under desks at school. We took her back to the doctors, undertook a WISC assessment (Wechsler intelligence score for children) and got her some help with a psychologist. We were absolutely gobsmacked when her WISC assessment came back with a score of 42 – moderately intellectually disabled. I sobbed as the psychologist asked how she attended to her activities of daily living. She was independent; I got the distinct feeling she didn’t believe me. The school was equally shocked by her score. I was devastated and felt an immense sense of guilt that I had missed getting Madison help earlier. Fast forward to today I can see that she has extreme anxiety around learning and tests. I know her capabilities are so much more than the score on that test. I can reflect and see that the score was beneficial to her. She got NDIS funding and extra help at school. Both of which she didn’t qualify for before the WISC assessment.

Today Maddy is in year 8 and 13 and a half years old. She is the kindest child I have ever known. She does require extra help at school and certainly has her challenges but she is organised, independent, and self- sufficient. She catches the bus to school, plays netball with her friends and can waterski on one. Madison has taught our family so much and I am so incredibly proud of her attitude, determination and easy-going nature.

I hope by telling our story I can give hope to another family with a new diagnosis. The road isn’t always easy, but it is always worth it.

Emma