Friday, March 14, 2014

Leg Contractures and a Last Back Scar Photo

A blog reader had a great question.  She was wondering what I mean when I'm talking about Mason's leg contractures.  I really don't have a great explanation without pictures so here are a bunch from this morning.  As you can see just from the first photo, Mason's legs do not stay stretched out on their own.  His right leg tends to be pulled up even further than the picture shows, but this is a good representation.  His right leg has the worst contractures.

Here is a view of Mason's right leg.  What I am doing is rolling his hip in so it is not frogged out and then trying to push it down into a straight position.  I'm pushing pretty firmly and it won't budge.  Six months ago it would have straightened pretty well.  Over a period of a month it went to about half this angle when Mason hit a growth spurt.  It has continued to get worse.

Here is a view of Mason's right foot.  I am attempting to push his foot flat like it would be to wear a shoe or stand on the floor.  This is as far as his foot will go, pointed like a ballerina a ways.  It, too, changed very rapidly.  When he was little this foot was so flexible.  Then it started only going to a flat position, then over the same month as the hip it stopped going flat at all.  Mason cannot wear regular shoes because his foot won't fit in them. 

Here is a view of Makayla holding Mason's left leg, hip rolled in, attempting to straighten it flat.  It goes much straighter, as you can see.  What you cannot see, or feel through a photo, is the tightness and tension in the hip.  It is beginning to contract and getting it this straight takes a good bit of pressure.

Here is me holding that left foot and trying to flatten it.  This foot is no longer flexible and is progressively getting worse too. 

These contractures began rapidly during a growth spurt because Mason's spinal cord is tethered.  Usually the spinal cord is floating around in the spinal vertebrae.  His has stuck to the scar tissue from his back closure because he's missing part of several vertebrae.  When the spinal cord is stretched tight like this it causes neurological symptoms and ultimately does permanent damage.  The detethering surgery Mason has on Monday will hopefully remove this underlying problem. 

That will still leave us with tendons and muscles that have contracted, or shortened.  Mason will probably need surgeries on the right hip, right foot, and left foot to lengthen or release those tightened muscles and tendons, followed by casts.  We don't know the details on those surgeries and won't until his tethered cord is fixed and things heal.  There is a possibility that some intense physical therapy will stretch the left foot back out and make some gains on the right hip and foot.  We will talk all that over with the orthopedic surgeon when we get to that point. 

To change topics for a moment - I wanted to share here photos of Mason's back as it looks today.  If you read back through the first year of his life we tried to update photos of his back scar as he grew.  With the surgery on Monday we will once again have healing to do and what is pale and much less noticeable now will become an angry red slash again.  I want these pictures to remind me that scars fade in time.

I took these picture in the middle of the day today.  Mason thought I was quite silly trying to fold down his pants and diaper, have him sit still, and take a picture from behind him.  And yes, he is the most handsome, cheerful little man.

Here is a close up of the scar.  Parts of it are original, from the day of his birth.  The outer ends were smoothed out surgically last May.  He does have feeling all along the scar and a little below it. 

Here it is from further away to give you better perspective on where it is.  I don't know where his new scar will take over the old one, or how much of the old one will be left.  The new one may be vertical instead.  It really all depends on Dr. G! 

Well, if you've read through this long post I thank you!  I hope that some of what I share here helps others.  As always, if you have any questions for me feel free to ask!  You can leave a comment or email me at tdrowlee1 AT gmail DOT com. 


  1. Tristan I can't imagine what it must be like for you to discover all of these things. Through it all you can tell by that smile on his face that he is in the very best hands of an extremely loving mother. Through it all I can tell by the look on his little face that he must be and endless source of comfort and joy to you and your family! Keep up the good work in taking care of such a blessing.

    1. He really IS a joy Courtney. One of the questions we get a lot from those just finding out their child will be born with SB is 'will they have a life worth living or just be suffering all the time?'. I usually wish they could just come over and meet Mason. They wouldn't ask that question any more. Yes, there are hard things, exhausting things, and overwhelming things. But the fun, happiness, joy, and love far outweigh those things.

  2. I wish I could like your reply as if we were on Facebook! That scar has healed so nicely! It will once again, and you will have more flexibility on top of that :) I'm so glad that you've kept us all posted on Mason's progress. We'll be praying for him!

  3. Thank you for explaining and showing the contractures. No one ever used the word contracture to describe my 10 yr. old daughter's feet, but when she hit a growth spurt, they crunched right back up and I didn't know I should have been stretching them even more during that time. With braces, they've stretched back out, but she lost a lot of ground in between. I also think that her back can be considered contracted, which led to scoliosis, again, if only I'd known to have her stretch during her huge growth spurts. My daughter's condition is considered close to the SB family. Her spine wasn't exposed, her lower spine just isn't there at all, so she has a lot of issues in common with Mason, plus several he doesn't have, but she can walk, though she does have a lot of lower leg atrophy and malformed feet.

  4. I'll be praying all goes smoothly with the surgery. Mason has an amazing smile!

  5. Praying for Mason, Tristan. I don't always comment, but I'm so glad you are sharing his journey and it's great to be able to see how well he's doing. LOVE his new glasses!

  6. Praying for you and your son today!!

  7. Praying for you all! Thanks for sharing all the info and photos....I feel like we cannot learn enough to be ready.
    We will continue to pray for all of you.

  8. He is a cutie! Thanks for sharing!


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