May 8, 2011

Lipomyelomeningocele...That's what he said.

First, a little background...Compliments of Seattle Children's Hospital...

What Is Lipomyelomeningocele?
A lipomyelomeningocele (pronounced lipo-my-elo-men-IN-go-seal) is a rare birth defect. It affects a child’s backbone (spine).  A lipomyelomeningocele is a fatty mass that is located under the skin on the child’s back. It is usually located in the middle of the back. The mass goes inward to the spinal canal. A lipomyelomeningocele is covered in skin. You can usually see it on the outside of the child's body. It looks like a large lump.

The two biggest problems that develop with lipomyelomeningocele in children are:  The spinal cord gets stuck (fixed) to the fatty mass and the fatty mass puts pressure on the spinal cord.

It's Mother's Day, and this has been on my mind for some time, so today felt like a good day to put it out there.  As every mother knows, all of my children are special for different reasons. While you don't love one more than another, you love them differently.  Girlo Two is my tender-hearted artist.  She cries when she's angry with someone because she's more irritated at herself for feeling angry toward them.  As my firstborn, she was the first one I experienced unconditional love with, so there's always a different relationship between us than the others.

Baby Girl is such an amazing combination of us, it blows my mind sometimes.  I suppose because I'm in such a different place than I was with her sister and brother, I'm getting to enjoy parts I didn't have the ability to before.  She is stubborn, curious, loving, and firm in her nature.  I'm not sure what her specific gifts are, but I expect her to do great things.

This post is about my middle child, my sweet boy.  I did all the right things during my pregnancy...ate the right foods, didn't smoke or drink, took my vitamins, and was tested for all those various things they test for.  Everything was normal.  Then he was born. And when he was born, there was a small spot on his bum with no pigmentation. 

Because I get so sick from the meds during the surgery, I spent several hours after his and Girlo Two's births sick and sleeping.  Not pleasant, but I survived.  When I returned to my room, he was not there.  My dear friend came to see me, and she said it wasn't in the nursery, either.  I later learned they had taken him for x-rays at a different hospital with a NICU.

Long before I became pregnant with him, I remember asking my friend when she was pregnant if she was being tested for Down's Syndrome and all the other things they test for.  She said no because it would not make a difference to them.  I clearly remember saying, "But I'd want to be prepared."  There is no preparation; it is a journey with no map.

Our pediatrician, who will always be a saint in my eyes, knew there was something wrong and sent us to a specialist.  At four months, I walked into a neurosurgeon's office with my sweet little boy, and he told me there was a tumor bound to his spinal cord and surgery was needed.  I could tell by the furrows of his brow he was trying to communicate to me the seriousness in a vocabulary someone without his knowledge would understand.  His look and the convoluted images of my baby's back said what his words could not.

At five months I gently laid my baby in the arms of a nurse whose name I did not know and I walked into a waiting room for an 8 hour test of my will.  The nurses called hourly to update me, and finally he was out of surgery.  The mass was tethered to the cord and had twisted all of his nerves.  What should have been to the left and right was in front of and behind.  They had taken the tiny vertebrae out of his back and then placed them back together.  The staples ran from his tiny bum to his shoulder blades.  But, he was alive and breathing.

There is nerve damage.  Whether from the mass or the surgery, we'll never know, and it's not important.  He wears braces on his legs, and his doctors believe he will at some point ask for a wheelchair to get around.  We've had a few other surgeries since for issues related to it.  Other than these things, he is a normal boy.  He wants to work for the FBI; he has a wit beyond his years; and he beats up his sisters with annoying regularity.

On this Mother's Day, I want to say thanks for my little boy because he taught me to live life a little lighter.  I thought I'd need to be prepared for a child who needed a little more, but there is no preparation.  We take it as it comes, and we try to work out the kinks.  When I watch him walk his funky walk into school or when I hear him taking off his braces at night, I'm grateful I got him.  He will never be the little boy version of Forrest Gump who just miraculously runs out of his braces and turns into some hippie marathon runner.  That's not reality. But it's okay.  I love him as he is forever and always.


  1. Your children are all special- but "the boy" is something extraordinary. He is brilliantly funny and so special. Thank you for writing this piece. It's precious.

  2. This is just beautiful!!!!