Wednesday, February 4, 2009

Orthopaedic Appointment

So, we went to DC on Tuesday to meet another orthopaedic surgeon about Harlie's spinal issues. Well, actually we went to the outpatient clinic in Fairfax. That location got us an appointment faster and, actually, it was a lot easier and quicker to get to. This surgeon specializes in spinal issues which makes me feel better. And she is at Children's National, which is where her heart surgeon is, so I certainly feel more comfortable with her having this kind of surgery there - where she's already well known by the cardiac team. Anyway, I liked her a lot and I feel like she took her time educating me on what Harlie has and what it means.

Basically, Harlie has a few issues:

1. cervical spine deformities - missing some vertebra and she has some fusion (doesn't need attention at this time)

2. Lumbar spine deformities - butterfly vertebrae (1 location), and 1 hemivertebrae (half a vertebral body)

3. Sacrum deformity - 1 hemivertebrae at the very bottom

The outward curvature that you see in this picture is called Congenital Kyphosis Scoliosis.




I've done some research trying to find a good site that explains it well but I had no luck. From what I can gather it is not very common. The congenital version, I mean. Older people can develop kyphosis over time, but that's not the same thing.

Anyway, she said the area that is most severe is in her sacrum. The hemivertebrae there is causing the tilting in her hips. She said that there are two options for correction.

One option is to remove the hemivertebra, in both locations, then fuse the surrounding vertebra in both locations. This is appealing because it will most likely straighten her spine immediately. The negative with this option is that because of the fusion necessary, it will leave her little room to grow. And she means growth in her torso. Which is important to give your heart and lungs the room they need to function properly.

The second option is to put in growth rods. While this might seem appealing to optimize her growth potential, there are some negatives. One is that it puts her in the OR every 6 months for adjustment. And it might not work on the hemivertebra as effectively as removing them, which means we might end up having to remove them anyway. At least that's what I think she said. If there is the option to do the growth rods first, and then removing the hemivertebra, I don't know. And that sounds quite painful and risky to me.

And to make things even better, if I understood her correctly, since she has abnormalities in her vertebra to begin with, her growth potential is questionable. I think she said that since it isn't normal, then normal growth can't be assumed. Or something along those lines.

She said that we will have to do something within the next 6 to 12 months. I told her about her upcoming heart surgery and potential craniofacial surgery (will know more about that next week). She said that both of those surgeries could come first and if necessary we could push her surgery back a little more to give her a little break. I just think that those 3 surgeries are way too much for her in a 12 month period. I mean she's just 2 for crying out loud! But the risk is that the longer we wait to do surgery, the worse it becomes and more difficult the correction will be.

Anyway, Harlie will have to have an MRI and CT scan before surgery. So she said that she would talk to Harlie's cardiologist up there to see if we can work those tests in during her stay/recovery from heart surgery. The MRI is to make sure there are no issues with her spinal cord and the CT scan is to see a full view of the bones.

I think that about sums it up.

Oh, and after that appointment, we left and rushed back to Richmond to take Cooper to the doctor in the afternoon. He has his 4th ear infection (and he's just 4 months old!). I don't know how old they want kids to be before they get tubes. My doc said that the youngest he's had get them is 6 months. Which is really quite funny to me. I mean, I understand it, of course. But, Harlie had heart surgery at 4 days old, and she was born 3 weeks early! So basically she had a major surgery at 37 weeks gestation. So funny all the fuss for ear tubes. Clearly, my perspective is different, well, unique perhaps. Not normal at all. But what is anyway?

Oh, and Cooper weighs 16 pounds. Boy is he chubby! It is so much fun having a chubby baby.

Well, that's it for tonight. Take care,
Christy

3 comments:

Grandma said...

Christy, you are really amazing!! How do you keep it all straight? I had to keep on reading and re-reading and still don't quite understand...all I can get is harlie needs the surgery and we have to do what we have to do to get her all straightened out. i will be there!!

Susan said...

Hmm. I wouldn't assume that growth will be an issue until that's proven. After all Harlie isn't text book and how much do they really KNOW for certain? I'm thinking the rods sound like a good idea until she can get some more growth and then if it doesn't work then the first option. Are they leaving this up to you to decide? Sheesh. No pressure.

Tracy said...

Not sure if your part of the VACTERL Network ( http://groups.yahoo.com/group/VACTERLNetwork
or not but there are many families on there that have children with scolosis. I know there are a few there that have had the VEPTR surgery and they are very knowledgeable about that. I also know there are a few families there on the group too that have children with kyphosis too.

www.caringbridge.org/visit/margaretreed1