Tuesday, April 3, 2012

Head Shape and Another Doctor?!?!

100_8566Life has been rolling along on a fairly even keel so there has been little to do in the way of updates until today.  Mason is growing like a chubby puppy, already weighing 13 lb 13 oz.  He has finally discovered his smile.

Today Mason had an appointment with Dr. P, the plastic surgeon who helped close his back the day he was born.  His back looks great and has healed well.  The ‘dog ears’ of skin on either side of the scar are still there, though one side has flattened out some as he has grown.  We’ll leave those intact until he is at least a year old and has made it through this first year of rapid growth.

The other thing Dr. P was checking today was the shape of Mason’s head.  Mason started out life with a funny head shape due to the spina bifida and hydrocephalus (a bit oblong like a lemon).  Then he had his shunt put in on the right side of his head, adding a lump to his head.  Like many babies who have a shunt placed, Mason does not like to turn his head to the side the shunt is in and lay on it.  He can, but he doesn’t like it. 

That can cause a few issues.  First, muscle weakness on the side he’s not using.  Second, flat spots or misshaped skull growth, which also makes the brain grow misshaped (or more misshaped than it is due to his spina bifida and arnold chiari malformation).  We’ve begun physical therapy to work on the muscle strength, but Dr. P needed to check out Mason’s head shape for a baseline so we can track progress.  After his examination he emphasized a few things and is setting us up with yet another doctor

First, we want to do all we can to avoid needing a pressure helmet to help reshape Mason’s head.  If he continues to favor the left side his head will get flatter/more misshappen.  Treatment for that is a pressure helmet, but putting pressure on Mason’s shunt could be a really bad idea.  It can mess with the function of the valve (causing fluid backup and brain damage) or could even split open the skin over his shunt.  100_8553The plan is to aggressively work with Mason every day on turning to and laying on the right side of his head too.  We’re supposed to:

  • Play with toys to his right side.
  • Talk to him from his right side.
  • Turn him to lay on the right side of his head any time he’s asleep. (He can’t side-sleep due to the foot brace for his clubfeet, so we have to work on turning his head instead.
  • Keep up the physical therapy we’re doing at home.
  • Enforce a lot of tummy time.  Even if he cries.  The sooner he strengthens all his neck muscles the sooner he can be upright more than he is laying and the less time he’ll lay on the left side and flatten it.
  • Once he’s strengthened those neck muscles work on lots of upright time in the bumbo seat or in someone’s arms.

There is one other thing Dr. P wants to check and it’s Mason’s vision.  All the therapy and work we could do will not help if the underlying problem is visual.  Basically, if one eye is stronger than the other the baby turns to the strong side much more often than looking straight ahead or to both sides equally.  They see better with that eye and so things on that side naturally draw and keep their attention better.  This can compound the head shape issues because he’ll just keep turning that way. 

Dr. P noticed that when I’m holding Mason upright he still tends to look to his left.  He’s not spending most of the upright time focused on what is right in front of him, and if you offer something in front or to the right side he’ll still turn to the left to look at something instead very often.  That is what led him to want Mason’s vision checked.  So we’ll be meeting with a developmental pediatric opthomologist (I think that was the technical name).

If it turns out Mason does have one eye much stronger than the other the general course of treatment is putting a patch over the dominant eye to force the child to use and strengthen the weaker eye’s muscles.  That patching routine could last weeks or months.  I really don’t know. 

I’ll be honest, I’m praying that Mason’s vision is normal.  I just want one less thing to deal with.  I know that God has a plan for Mason.  I know that God created this specific body for my sweet son for His glory and our learning.  So for now I’m acting in faith that God will heal what He will and that He’ll help us get through each day with what we must.  If it means one more doctor to learn from and more therapies to execute, so be it.  Mason’s an enormous blessing and I’m learning so much from being his mommy!


  1. Praying for you that his vision is okay :-). What a cute boy!!!!! He's bigger that my 4 (almost 5) month little guy! I'm so happy for you, looks like all that growing is helping with his skin from the surgery and muscles etc. I just want to give him a big hug! Thank you for sharing your journey and learning with us!

  2. He is so chunky! I love it! We'll be praying that his vision is normal. Can't wait to hear an update!

  3. You are a woman of great faith, and your little man is such an angel baby. I've let you slip from my prayers of late, but now I am reminded to do better. We just talked in our morning scriptures study yesterday about how Heavenly uses every single thing for our good when we have faith. I'm positive that whatever happens will become a blessing.

  4. I don't know if I'm just emotional today, or what, but I feel all choked up. So much for that little guy to go through. I will definitely keep him in our prayers. You told me all about it, but I have been able to reflect on it more as I read through your post. You have sooo much to do, I really hope several of those things pan out okay. I will be keeping in touch to see how it goes. Love ya

  5. We've had 2 infants that preferred one side over the other because of a stiff neck. Putting all toys on one side did work. it does help to notice that early on. I hope his vision is normal. We are going through that with our 7 year old-- patching everyday, vision therapy etc. not fun. I will be sure to remember Mason in my prayers.

  6. I will pray that the developmental ophthalmologist will be able to help. Another possibility is that he's having trouble with convergence (I think that's the term?), or eye teaming, which could lead to him looking at something from the corner of his eye (otherwise, it may look blurry or doubled). In other words, his eyes may see normally, but he needs some help to get them to work together the way they should. But your eye doc will be able to help if he needs vision therapy.

  7. Hi Tristan, thank you for your updates. Our first baby is 6 days behind Mason and we've been following your blog since we followed your link on the "spina bifida connection". We are in the UK so our experience is quite different to yours (we were in hospital for 2 weeks after he was born before we were allowed home) but we empathise with what you're going through with all the different medics - we feel they are queueing up to meet him. Keep going, all of you, Mason's so adorable, we're right behind you!


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