Isaac's Spine Pictures (and a corresponding explanation)

One of the scariest things Kristi and I have dealt with through the first month and half of our boys being with us is the constant realization of the upcoming surgeries that Isaac will face as doctors deal with the multitude of concerns they have with the internal structure of his spinal column and ribs.  So, we have received many questions about what exactly the problem might be and so we are posting his CT scans on his spine and pelvis areas.  As most of you will notice, there are some serious issues.  It is weird to see these pictures (even for Kristi and I) because we see our little boy right now and you wouldn't be able to tell the issues he faces with his spine.  So, I will do my best to describe what you are seeing in the pictures.  Again, the official diagnosis is Spondylocostal Dysostosis.  For our purposes, I have included the picture of a normal looking spinal column and ribcage of an infant.  In the picture you can see the feeding tube and monitor lines.  Notice the spinal column is straight and the ribs are separated appropriately.  This is a good reference point because after this picture are the two pictures of Isaac's spinal column.  His is obviously very different.

Normal looking spinal column and ribcage of an infant.  This particular infant has a lung problem but the general scan is a good reference point for Isaac.

And Isaac's scan - the first picture is from the front, the second is from the side.  This first picture from the front still amazes me because it reminds me of how disorganized his spinal structure really is.

Trying to explain these pictures is difficult, so hopefully the captions help.  The problems that you can see in this photo are the fused ribs (and he has multiple fused ribs), a missing rib (on the right side of his body, left side of the picture), a spinal column that is just disorganized, some vertebrae too close, some too far apart, some missing, and others underdeveloped.  The pelvic region and lumbar region are also very underdeveloped.  That pelvic area should have the look of the top of the letter T, but as you can see, it doesn't.

Now, this is the side view

This picture gives the incredibly clear visual of the spinal column dislocation.  You can see the huge void where the column has literally shifted way to left (right in the photo).  What this has done is force the spine to bend with the dislocation.  That puts the spine under incredible stress.  The spine is also very narrow at that point of the dislocation and that further complicates the issue.

Dr. S has said he will have two basic options for surgery.  One, is to move the spinal column over into the void.  This is a very complicated procedure and risky (though all spinal surgeries are risky).  The second is to fuse the bones together at the point of the dislocation and then in a second and third surgery chip away unneeded bone and let the spine "float" back into a relatively stable and comfortable position. Either way, the surgeries are complex and have a goal of easing the stress on the spine.  These surgeries will be done starting sometime between the age of 1 and 2.  Scary, but necessary.  At this point, Isaac has good movement of his legs, feet, and toes which is very promising.  It is hard to get any real prognosis for what his mobility will be like as he gets older and bigger.  We obviously pray for the best.

Anyway, that is the general idea and why Isaac is a very, very, special young boy.  As Dr. S has put it, he has seen all the abnormalities that Isaac has in his 20 years at CMH, he just has never seen them all present in one infant.

Thank you for everything all of you have done for us, we appreciate it.  Our journey will be a long one, but it has been wonderful so far.  Now, for a nap (haha, yeah, right).