We are so fortunate to live in a country where we have access to excellent medical care. Little Red’s time in the health system has been pretty much non-stop. I moan about that at times because it can be overwhelming. It seems whenever we go to see a specialist or our pediatrician another thing is suggested or needs to be checked on.
The journey has been long and I can’t even say that the end is in sight. But I’m confident that we are getting answers and that we have a solid game plan ahead.
As I wrote in my previous post, it was confirmed that Little Red has scoliosis (curvature of the spine). At the time of seeing the X-Ray we thought it was a mild form and that she would need to wear a brace, possibly a cast at most. Upon visiting our pedatrician he told us it is actually quite severe. She has lots of hemi-vertebrae which means that they haven’t really formed properly. There are also butterfly-vertebrae meaning that they’re kind of like wedges that meet in the middle (like wings).
Essentially she appears to have more bones on one side of her spine. At the moment she is flexible in that baby way so it isn’t noticeable. But as she starts to lose that and grow, the implications will really take off. Other organs like her lungs and heart can be affected as well as the fact one side of her will grow longer than the other. Fortunately it looks like all of her ribs are okay.
What happens now?
An MRI has been scheduled where she will need a general anesthetic. When we receive the results, we will then be referred to a highly regarded pediatric orthopedic surgeon (spinal surgeon specializing in children) in Sydney. He will then give his opinion on what needs to be done. Initially, like I said, it may be a brace and/or cast. However, it’s been made very clear to us that she will have to have surgery.
Scoliosis is quite common in teenagers, especially girls. My understanding is that it happens with growth spurts. Now, LR has the congenital version which means she was born with it, a bit like her luscious locks. We were hoping to manage it until she had reached puberty so only one operation would be necessary. Unfortunately that is no longer the case. We’re thinking the first one could be as early as next year. After that she’ll have to have several more as she grows.
This is where the kidneys are joined together creating one large organ. Often in the shape of a horseshoe. From what I’ve read some people have this and have no issues. Others may have increased infections, kidney stones or cysts.
Our pediatrician wants to check this out via ultrasound because she may have a condition called VATER Syndrome. We’ve learned that a big part of diagnosing is ruling things out.
This has a few names and can be called VATERL Association or VACTERL Disorder. It stands for different abnormalities or defects. You can be diagnosed with it if you have three of the associated conditions. For Little Red it would be Vertebrae and Cardiac defects plus the Renal anomalies should the horseshoe kidney be confirmed. (The cardiac component refers to the hole in her heart that has now closed).
The pediatrician is no longer considering Wildervanck Syndrome as an option. This is because LR’s hearing is fine.
Our pediatrician is also putting a pin in the Cerebral Palsy investigation for now. The physio and Occupational Therapist told me they don’t believe she has it anymore since a lot can be attributed to the scoliosis. It still doesn’t explain the spasticity in her left thumb and leg but that all seems to be relatively corrected now. Who knows? It could all be down to coincidence. Her brain is also being scanned during the MRI. If it shows brain damage then the CP may be confirmed. If it shows nothing irregular (which can even be the case for people that have been diagnosed with CP) then we’re still on the same track.
IT’S A LOT OF INFORMATION, HEY?
Yes it is. But we’re living in it and have learned things as we’ve gone along. We have a busy few months ahead what with physio, the ultrasound, an eye appointment, a whopping cough booster and then the MRI. A meeting with our pediatrician follows closely after that.
It would be easy to become overwhelmed, especially since we also have to organise what’s happening with our other two kidlets. I partly just don’t think about it otherwise I know I’d crumble. It’s all highlighted the difficulty of being so far away from family really. We have some amazing friends who I know would help us in a heartbeat. But when you consider their lives, what with work and children etc, it does make it kinda’ hard to ask or expect too much.
Even though we have all of this going on, we still consider ourselves lucky. The girls are both utter joys to be around and I feel so incredibly fortunate for the complete miracle that they are. My little posse of redheads get on so well together, it makes me smile as I write.
All things considered, we have an incredibly sunny life.
To read more about Little Red’s health journey please click here.