The Upside of Down

Today we met with the Craniofacial surgeon at Primary Childrens.  I was very nervous for the appointment.  I haven't allowed myself to celebrate the possibility of no skull surgery.  Our neurosurgeon was fairly certain that we did not need it at our last appointment, but for some reason I have felt uneasy.  The appointment began with the cranio surgeon not understanding why we where there.  After some confusion our neurosurgeon joined us for the appointment.  We reviewed her latest CAT scans and the 3D reconstruction of her head.  I will be posting those images soon to help make sense of everything.  Although Kiya's head has grown she has developed brachiocephaly and plagiocephaly.  Her neurosurgeon explained that head shape is determined by the shape of the brain.  When her shunt was placed it decreased the ventrical size.  The brain subsequently did not have the same pressure on the skull and the skull was left to form on its own.  The concern is over her forehead growing in an upward pattern and the tall profile of her mid skull.  Obviously she is beautiful and these are things we cannot see, however they are very evident on the 3D construction.  The neurosurgeon explained that a helmet would not have helped due to the shunt/brain matter situation.  So her is my upside of down; no cranial vault procedure, but still another surgery.

After our appointment we were sent to have yet another CAT scan (our 3rd in two months).  They will need very detail imaging to create a 3D model of Kiya's skull.  This model will be used to create precise incision points for a better outcome.  The procedure is called a Cranial Distraction/Craniofacial Distraction.  This surgery will be less extensive than the 8 hour vault procedure.  It in-tales an incision ear to ear so the the back of the skull may be exposed.  At this point several incisions into the bone will be made.  The primary purpose is to allow for the insertion of spacers.  These spacers will protrude externally from Kiyas head on both sides for hopefully no more than two weeks.  The skull will be progressively expanded toward the back to give her more volume.  It will also create an opening in her where new bone will grow so that her brain has more potential for future growth.  The doctors said there has been great success with this surgery also fixing the frontal lobe without having to operate on that.  For some reason fixing the back causes the front to self correct.  If the surgery goes as planned it will save us from more extensive skull procedures and possible eye socket reconstruction.  Obviously I am very saddened that my 1-1/2 year old baby girl will be having her 4rth surgery.  I really hope this pattern does not continue.  I also will be in charge of tightening the screws to her spacers everyday knowing that I am causing the skull to push backward.  I am concerned about post op pain, incision sites, bone growth etc.  Right now I feel pretty numb as well as grateful that we don't have to do the cranial vault procedure.  Parents really ought to be allowed to undergo their childrens pain, disappointment, surgeries, and health problems.  Sorry for the formality and medical emphasis of this post, but it allows me to stay detached for the moment.

Updates

Yesterday we met with Kiya's Neurosurgeon to discuss her head growth and shape.  We also had another CAT scan to get more detail.  The great news is that Kiya had some head growth which is what we were praying for.  Her sutures are still slightly open although her neurosurgeon feels that they are not as open as they should be.  He explained that Kiya has mild brachycephaly, but there is no imminent pressure on her brain right now.  He does want us to see the cranial facial surgeon to get a second opinion.  We don't want her head to continue this growth pattern or it could result in deformation.  We will meet in two weeks with the cranial dr and hopefully he will agree that she doesn't need surgery.  Once again thank you for all the love, support and prayers.