As you guys know, Little Red had her MRI around two weeks ago. I’ve briefly mentioned a bit of feedback we got about her brain and spine a couple of days ago (which you can read here and here) but I’ll use this post to be a lot more thorough in regards to her MRI results.
We met with our pediatrician on Tuesday and here is what Dr L had to say…
Just to be clear, LR has three issues with her back that we are aware of. They are:
- Butterfly vertebrae;
- Scoliosis (curvature of the spine).
It’s great that the Butterfly and Hemi vertebrae don’t impinge on the spinal cord. I’ll be honest and say I don’t exactly understand why this is good news but I’m more than happy to just go with it!
Unfortunately, that is where the good news ended in terms of LR’s spine. I’ve shared a photo of her X-Ray before, but here it is again with some more information.
What the MRI showed in greater detail is how she has more malformed bones than “good” bones. The crux of the issue is if the sides don’t equate to the same length, then one side of her will simply grow longer.
Bracing might be a way try and stop the curvature worsening but the reality is it can’t fight against nature. The way it was explained to us was that if it was more of a muscular issue then bracing would be a great option. Since it’s skeletal and structural, surgery is the only way to really fix it.
Dr L made it very clear to us that spinal surgery is a when not an if. He also said that it’ll probably happen when she’s young because then her muscles won’t have time to strengthen in a “wrong” way.
As the specialist, it’s now up to the orthopedic surgeon to decide what happens next. We see him towards the end of October. It’s an appointment we’re both willing to be here as soon as possible but also dreading with all of our being.
LEGS & FEET
Since the focus has been on the spine we kind of forgot that the orthopedic surgeon IS AN ORTHOPEDIC SURGEON, and therefore the perfect person to ask about her legs and feet! Even though his interest is in pediatric congenital scoliosis he can obviously look at everything and give his opinion.
EARS | NOSE | THROAT (ENT)
Back in May, Dr L referred us to an ENT. At the time it was more of a dotting the i’s and crossing the t’s type of thing. I made the decision to put it on the back burner until LR was a bit older and where she might sit and actually be examined in the appointment. It still kind of is an information gathering thing, but since LR has a hoarse voice and has snored since birth it’s worth checking out. Some conditions list both of those as symptoms so while it could be nothing, it could also be something.
LR’s hearing was confirmed to be fine so it could also be as simple as her Adenoids needing to be removed. I think this is quite common in children.
I asked Dr L if he thought Little Red had CP and his answer was no. However he did think all of her ailments are connected in some way. Throughout our own basic research (thanks Dr Google and Wikipedia) we have discovered that many conditions can mimic some CP traits so this isn’t too surprising.
Dr L spoke about involving a clinical geneticist. We’ll be contacted and then will probably answer a thousand questions about ourselves and our family history. This will let the specialist target a specific group of genes to test instead of a broad fishing trip.
Hubby came up with a really great analogy to simply explain, well, everything. Basically think of Little Red like a house. Were the blueprints wrong to begin with (genes) meaning that there is a condition that links all of her ailments? Or was it simply a dodgy builder and this is just how she was made?
Either way, LR will have a condition that links everything. It’s just whether it is congenital (for example, spontaneously occurred at six weeks gestation and that’s it) or genetic.
It’s important we clarify what is going on. If she does have a genetic syndrome of some sort then it may be that we need to keep an eye on certain things. For example, would it mean she could develop hearing loss at age twelve and therefore six monthly check-ups with an ENT is necessary? If it’s just how she is built then knowing she isn’t going to develop something else would be a relief.
It’s a lot of information and I wouldn’t blame you if you’ve become glassy eyed and confused reading it all. It’s easy for us to forget how overwhelming it can be to a listener to have so much offloaded on to them.
Again I’d like to thank everyone for your support. I really feel like there is a beautiful community surrounding us and it’s a real comfort.
To read more about Little Red’s health journey so far you can click here. I also share additional things on my social media so if you’re on there it’d be awesome if you could give us a big thumbs up.