The One in a Million Baby started out as a personal blog, and is now a resource for special needs parents, families and communities.
Our lives are full of odds. When you buy a lotto ticket your odds of winning first division (in New Zealand that is) are 1:38,000,000, and yet people still fork out money every week for their chance to win big. When the circumstances are a little different and the odds mean something negative, like a birth defect or chromosomal disorder, we dismiss the much higher odds because we assume it won’t be us who make up that number. The rate for Downs Syndrome can be as high as 1:800 babies, but no one seems to worry, even though they probably buy a lotto ticket each week.
I, like most people, assumed my baby would be healthy and normal in the medical sense of the word, and never even thought of the possibility of her having a complex medical story, that is until the 12 week scan.
In my eyes, Eva was already a one in a million because I have Polycystic Ovarian Syndrome (PCOS) and had thought it would be harder for me to have a baby in the first place. Since that first 12 week scan, it has been a rollercoaster of hope and disappointment, joy and grief. I discovered Eva was more of a rare jewel than most, and she was diagnosed with CHARGE Syndrome which left her blind and deaf, with heart and brain abnormalities.
Eva died in February 2015 due to complications around her breathing. Her death was sudden and unexpected and it came at a time when she was making such huge leaps in her health and development.
The One in a Million Baby explores my own journey with Eva and also the journey’s of other parents and their one in a million children.