So now we knew. Emma fell just below the curve for level 4. She was having real issues with head and trunk control.
Knowing this was devastating – but also, a relief (really!) to know her true level of motor ability and likely prognosis. A relief because according to the study, these outcomes are true for you whether you do therapy five days a week for hours a day AND they are true even if you do nothing. Doing everything and doing nothing is the same.
This is especially true for kids with severe CP like my daughter. This knowledge freed me because it took away a lot of my sense of failure (we were not making any progress). It forced me to look at the grid of knowledge and understanding of CP in a new way and even question the grid. I was not afraid to move ahead into uncharted territory.
You might ask why, as a parent of a child with CP, have you not heard about this GMFSC system? You are not the only one. This lack of awareness has even been a topic of studies. One study in the Netherlands found that many healthcare providers are unaware of the GMSFC and even if they did know a significant number choose not to talk to parents about it. I think this has to do with the common fact that healthcare providers are really unskilled at breaking bad news. This is something that needs to change as many studies have shown that patients need to know their new redefined reality in order to make choices to be able to cope. Without understanding what is going on, you cannot move forward. It is empowering to have a gentle and frank conversation.
My biggest regret is that my doctor did not tell me about the GMFSC curves. I regret losing two valuable years in my child’s life to therapies and people who did not know how or care to tell me the truth and, worst of all, who offered us nothing that would change the game.
Maybe our story will help others to make more informed choices for their baby during the first years of life.The thrtuth