I’d like to start off by saying that I’m blown away by the support on my previous post regarding the first mention of Cerebral Palsy. (You can read it by clicking here). I’d like to give you a more in-depth explanation. I think lack of knowledge can create fear and I don’t want to risk doing that because I can easily relate to those kind of feelings at the moment.
Little Red’s physio said it COULD be Cerebral Palsy (CP) not that it IS. A formal diagnosis can take a while if it’s not an obvious cut and dry case. It’s been mentioned it could be well into next year before anything is confirmed. There has been a team of professionals looking after both girls this year because they were born so prematurely. Granted, LR has always needed a bit more attention largely due to the fact she was smaller and had other medical issues, like the hole in her heart as an example.
I’m not going to lie, when the physio said that LR might have a mild case of Cerebral Palsy my heart momentarily stopped. I didn’t know what to say because I wasn’t really too sure what it was or what it meant for her in particular. It was explained to me that CP is an umbrella for varying symptoms and is a broad condition with several types.
TYPES OF CP
There are the more well-known Quadriplegia cases that is obviously the very physical affect of CP. Tthen there can be a mild physical form. For example, someone may have some spasticity (where the muscles are stiff and tight) in only one of their hands and they could be diagnosed with CP. Intellectual disability can be in combination with both mild and severe physical cases.
In LR’s case the type of CP it could be is Hemiplegia, meaning that one side of her body is affected. Currently I don’t believe she would have any intellectual disability because of how she interacts with us (she’s very much on par with Copperhead). It’s true that she could fall under the “learning difficulties” banner when she starts school simply due to the fact she may need some more one on one. (Children with CP may have issues with fine motor coordination and communication along with other symptoms).
The NICU outpatient medical team are amazing, I cannot speak highly enough of them. While they have explained to me that this is what they’re thinking, they’re also professional enough to say “hey, we could be totally wrong”. The diagnosis isn’t necessarily quick, especially in a baby or child where it isn’t completely obvious. It could be that we have to wait for certain expected milestones to be reached (or not reached) and take it from there. The real test could be when she starts walking or talking. It’s very much a waiting game at the moment. I’ve been told an MRI would probably need to happen at some point too.
How could she have got it? Well, apparently it’s more common in multiples (although it’s rare for both to be diagnosed with it), more at risk as a premmie and with a low birth weight. It’s more likely to happen in-vitro or soon after birth, perhaps due to a stroke. Head traumas can cause CP too. Personally, my thoughts are that the placenta could have been failing her for a while by not feeding enough nutrients and oxygen and/or she could have suffered a stroke as a result. It was her placenta that kicked everything off after all.
At the moment I swing between fitting her in the CP boxes to sitting on the fence and reasoning that it still could be because she was so squashed in the womb. Hubby is pretty sure she has CP but until I’m told categorically that yes, she has it, then I’ll just play the waiting game. Not that there is anything fun in that.
WHAT DOES IT REALLY MEAN?
It’s all a bit strange really. The best way I can explain my current train of thought is that if Little Red gets the CP diagnosis then everything and nothing has changed. She’s a happy little baby who seems to interact on a deeper level. The Mothership described it in the most wonderful way – she doesn’t just look at you, she looks into you. It’s true, she can make you feel like you’re the only one in the room. She gives as good as she gets to her more boisterous and quicker sister and laughs from her belly. If you can’t tell already, I’m deeply in love. So, that’s why nothing will change. We’ll have more appointments and more therapy. Maybe I’d have to look at her world in a slightly different way when it comes to development and teaching and learning but you could say that about lots of kids. We’ll just continue to take it one day at a time.
If you’d like to read up more, this is an excellent link to the Cerebral Palsy Alliance – click here.
To read more about Little Red’s healthy journey please click here.