Since that horrible day, I have spent a great deal of time researching and breaking down the literature. Here are the basics:
Cerebral Palsy Diagnosis – the facts:
Up to 10% of children with CP can have normal brain scans.
The brain scan cannot accurately predict CP, the degree of CP or how a child will develop
The average age of CP diagnosis is 18 months.
Even if you have a CP diagnosis, nobody can accurately predict your child’s potential, especially if they’re under the age of two. Even if the doctor has a gut feeling, they cannot commit because they know they could be wrong.
No clinical exam can predict prognosis – especially if the child is under two years old.
Now that I knew this, I moved on. Well, I tried to.
The first message to parents with babies who are at risk is: “Anything can happen”. Then: “Do Early Intervention (EI)”, follows quickly on its heels.
Motivated therapists welcome you and your child into their fold. They start telling you that we need to use the body and stimulate it in the hope of establishing new neural pathways so that the brain can relearn how the body should move. They tell you how wonderful the brain is and you learn about brain plasticity.
So, you start motivated. You can do this! Through the all sleepless nights, the anxiety, the fear, the feeding problems at home and the tremendous emotional pain you keep going. This is exactly what I did. I had therapies lined up five days a week. I was going to make my child develop even if it killed me.
But sometimes your pose slips, you bare your uncertainties to a kind therapist who listens. You softly ask: “How bad is it? Do you think she will walk?” You brace for the negative answer, but it does not come. They shrug. They say anything can happen and then they tell you about a child they once treated who against all odds started walking at the age of…
There is good reason why this is so. Therapists know that there is no good evidence that EI consistently changes the gross motor outcomes of children with neonatal brain injuries. Some children are delayed and seem to catch up by the age of two and others seem not to respond regardless of the intensity of therapy they get. There is no way to predict who will and who will not. As a parent you are therefore mostly left in the dark.
So naturally you get desperate. You start researching stem cells, swimming with dolphins, essential oils etcetera. You tell your therapist about new therapies, but you see she does not really encourage you and yet there are no alternatives she (or he!) can offer you.
I did all of this for two years but kept searching, because my scientific brain told me there must be a study out there that prognosticates. There must be a diagnostic approach that gives definitive answers.