In December 2009 my Emma was born. We chose to name her Emma because it means “complete”. She was beautiful and her birth symbolised the completion of our family. A few weeks later, this symbolism took on a new meaning. We were told that our beautiful baby daughter had suffered a brain injury during birth and that she would most likely have Cerebral Palsy (CP). They said that she, herself, would never be “complete”.
The neurologist who gave us the news walked over to the light switch in the room. He started flicking the switch on and off. He said: “The muscle is the light and the switch is the impulse from the brain. In your daughter’s situation, the signal never gets to the muscle – the light never goes on. Even if the signal gets there, it gets there in a distorted way and this means she will never produce typical movements. She will be a sweet girl in a wheelchair.”
We were gobsmacked. I knew my daughter, I had often stared into her beautiful blue eyes before this doctor’s visit. I was not going to let his predictions get me down. In my heart I knew that there was more potential to my daughter than a signal that did not travel. I knew that if I could just see her develop on her own curve, that things had to get better – regardless if the curve was not typical – we had to end up higher than where we were. So I said to the doctor: “Okay I hear you, but will she keep developing on a curve? ” He answered: “Yes.”
Neither he nor I knew it then, but he was utterly mistaken. I know now that children with severe CP have a much bigger problem than just signals not activating the muscle. They are also not “just” developmentally delayed, they are developmentally stunted if nothing is done. This causes many more problems than the nerve signals that do not travel in the child’s life. It affects all the layers: emotional, cognitive, motor, sensory, structural and spiritual. CP is a motor disorder in the medical textbooks, but in reality the stunted effects are global. In a world where specialists only look at parts of the body and not the whole, the big picture of CP is often missed. Luckily, as a Family Physician, my medical training helped me never lose sight of the big picture and have I been able to find the therapies that bring global development to Emma.
Thanks to new scientific discoveries and these novel therapies, we have been able to save my daughter from being developmentally stunted. Because of the interventions I do with her every day, she is able to develop and her curve keeps going up. She may always have CP, but she will also continue to improve. This, I have come to realise, is worth much more than splints or other “band-aids” that we use to “prop” a struggling person. A thriving child is something to work for and achievable in the face of dire prognoses!
As a medical doctor, I am in a good position to access and unpack the medical literature and current approaches to childhood brain injury.
What I aim to share in this blog is our story of how we have been able to outwit the fate of pain and deterioration that my Emma faced. It is my hope that this learning could serve and encourage others who find themselves washed up on the same shores as we did six years ago.
Take a deep breath. There is always hope.