lipomyleo….huh?

Here we go….whew…where to start…what to say.  Hang on.  I sit here overwhelmed with the gravity of a situation I could not have imagined.  6 days ago we welcomed into our family our 7th child.  We call her Lil’ Bit.  She is  absolutely beautiful.  Before she was entirely out of the birth canal I was struck by her beauty (I was in great position as we had our 7th home birth and 3rd intentionally unassisted home birth) as she completely delivered I noticed an abnormality on her back.  I was alarmed for sure, but everything checked out physically;  all the parts worked.  That was last Sunday.

On Tuesday my wife went to the chiropractor for postpartum adjustments for her and the baby.  Our Chiro took one look at the mass and told us to have it evaluated, incidently had she not said so we were going to the doc anyway.  She sent us to a doc who is familiar and accepting of home-birth families.  You see, in Alabama where we live, most doctors will not help home-birth families very readily.  Lay midwifery is “legal,” but the midwife must be certified with the health department.  The health department has made an “administrative decision” not to grant certificates.  Nice.

On Wednesday, the primary doc was concerned, but thought that it was probably a minor neural tube defect (meningocele).   He referred us to The Children’s Hospital of Alabama at the University of Alabama Birmingham.  After sending the pictures to the pediatric neurology department they admitted us directly to the NICU.  Things just started to become a blur.  We spent the rest of the day getting tested.  Wow…here’s where the rubber meets the road in our choices about medicine and intervention.  Ya see, were not anti-medicine in general, but just have some philosophical differences with the medical community especially in regards to birthing.  Anyone who knows me has heard me say that docs are great fixers, but birth isn’t something that needs fixing (generally,) but if something needs to be fixed they are the ones to do it.

Lil’ Bit needs fixin’.  That Wednesday was all about how to transition and compromise to get the best possible care for her.  It was about putting my philosophical “money where my mouth is.”  We didn’t get any diagnoses after several tests on Wednesday.  I was concerned but hopeful.  I did kinda wondered why they didn’t have any results to share with us.  Thursday brought the news why.  They couldn’t tell us because only the neurosurgeon was the appropriate one to speak to her condition.  Your baby has a lipomyleomeningocele, he explained as he showed us the x-rays.  ”Your baby has Spina Bifida.”  Wow………….  He began to tell us all of details of her condition.  He said that the type she has is Occulta (hidden.)  In other words, there is not the opening in the skin of the lower back associated with the more common forms of Spina Bifida (good news for a home-birth baby,) which always needs surgical repair immediately to avoid infection (meningitis) of the spinal cord.

So what can be done?  He told us that there were two options 1) do nothing, and let the natural history of this defect run its course; The natural history being a 100% guarantee of progressive neurological deterioration starting at the bladder and bowel moving to the lower extremities and ending at the hips and resulting in almost unbearable pain as an adult.  2)Have a risky surgery that may result in further neurological damage and an uncertain long term outcome.   It was overwhelming.

I felt so bad for her.  I fought with everything in me to maintain composure.  I WAS NOT PREPARED.  How could this perfect little girl have such a devastating defect.  Everything I have written to this point is pretty well just the facts the situation.  So I looked at the doctor and asked if I could repeat it all back to him to make sure I understood.  So I did.  I asked if that was correct he said that yes, except he wanted to change the language a little.  Ok, I figured, maybe just a little mistake.  So he says, “The decision here is hope or no hope.”  That was the real issue.  Natural history is decisive all of the time (no hope.)  Surgery is decisive some of the time (Hope.)

Our choice:  HOPE!

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