Surgery One

Surgery day is here.  It is an outpatient procedure that comes with a one night recommended stay for pain management. Tues - travel and get ready, Wed - surgery, Thurs - recover.

Pre-Surgery

When the nurse tells you the rules and your child is not to eat 8 hours before the surgery make sure to err on the long side.  We learned the hard way....

Our surgery time was at 12pm (noon). It got delayed to 3pm due to the food error (eating within the 8 hours) and the appointment ahead of that ran late so surgery didn't begin until 4pm.  We had checked in at 9:30 and were up at 5:00.  Long day in a waiting room.....We will do it differently next time.

The procedure to install the expansion balloons took two hours and went easier then expected.  That two hours in the surgery waiting room is like six.  You cannot wait to be done, but you know that first day is going to be hard.  We got called to the recovery room a little after 6pm.  "C" was doing great for his part!  He was laying in a little infant bed and immediately wanted me to hold him when I arrived.  Only one parent can go into the recovery room so I went because my wife was spending the night with him.  This was my chance to have some time with the little guy.   I got to feed him Enfamil out of a bottle to keep him hydrated.  Here's a kid that never touched a bottle, now drinking from a bottle.

The tangible response of relaxation that "C" had when I held him was awesome.  He was in pain and around strangers, crying, the nurses were attempting to comforting him.  I picked him up (monitor wires, IV and all) and sat down in the rocker and *sigh* he stopped crying and breathed deeply with a little moan per breath, then he slept a bit.  Maybe it was the narcotics they just gave him, but I think otherwise. ;)         

A little after 6:15 we were released from recovery and sent to a low intensity recovery unit.  Pain management was the main objective at this point.  About every 45 minutes, and on cue by "C", we were able to give him something to keep it reasonable.

Post Surgery

As an elective surgery this was a moment where big picture focus was needed to keep it all together.   Poor guy.

Tissue Expansion - Pre-Operation

Once the decision was made to remove the mole a surgery date was scheduled.  A pre-operation appointment occurred two weeks prior to surgery to go over final surgery plans and answer any questions and concerns we had as parents.

Pre-Op: The surgery plan was to make two 6 cm incisions along side the mole, loosen the tissue and insert a tissue expansion balloon behind the mole on the back of his head and in front of the mole on his forehead.  The mole size being 11 cm in diameter requires removing and replacing 7 cm of scalp (with hair) and 4 cm of forehead (no hair).  the tiny bit of mole in the eye-brow, eye-lid and upper cheek would be handled in a later surgery.

Once the tissue expanders are in place time will be allowed for healing.  Then the tissue expansion process will begin, which involves injection of a saline solution into the expanders under the scalp via two ports under the skin.  Six to eight inject dates will be necessary.

Nevus Excision - Tissue Expansion

Plastic surgery is nothing new to my wife and I.  Our older son had a condition, craniosynostosis, just after birth where his skull sutures fused prematurely, which required craniotomy to allow space for normal brain growth.  Our experience at Peoria Children's Hospital at OSF was great so we had a familiar plastic surgeon to work with.  Because this is somewhat new territory we also visited a pediatric plastic specialist at St. Louis Children's.  Both very good at what they do.  The abbreviated version is that nevus removal would require more than one surgery, potentially 3-4.  Roughly 60% of mole is scalp, 30% forehead, 10% eyebrow/eyelid and upper cheek.  Due to this varied tissue make-up this is not a simple one step procedure.

Tissue expansion would be required to remove a majority of the mole in 2-3 surgeries.  Due to the inward and outward pressure involved in the expansion the procedure isn't begun until after the 1st birthday.  So we had some time to think about it.  The interesting thing is one would think the cosmetic concern going through life would be a big piece of the rationale going into the surgery decision.   It wasn't, look at how cute this kid is (even if I say so myself).  Do you really want to cut that up?  Heck no!

The risks of future impact on health and complexity and position of the mole makes surgery a compelling thing for now, not when he is 15 or 25 or later.  Could you imagine walking around high school with scalp expanded out the size of a bowling ball? Not happin'n. Certainly cannot do it, cosmetically right, under the gun if the tissue becomes cancerous.  

The choice was made to excise the mole and have the procedure done at OSF Childrens Hospital in Peoria, IL by Dr. Elwood.

Peoria Children's Hospital at OSF

   

Giant Nevus - Pediatric Dermatologist

So our first step in following doctor recommendation was to visit a pediatric dermatologist. Recommendations ranged from Chicago to St Louis. The reason was that a specialist with regular experience with giant nevi would have insights that others may not.   So we took the direction of visiting Dr. Bayliss at St. Louis Childrens Hospital.

St. Louis Childrens Hospital

Scheduling time with the doctor required a recommendation from Connor's primary care physician and then we had to check with health insurance to make sure the visit would be covered.  Out of network... of course.
The visit day came and we drove 3 hours to St. Louis for a visit that confirmed - yes, this is a giant nevus, no it does not appear to be "high risk" because the surface texture is uniform and there is no irregular or concerning features, but yes there is an elevated risk of cancer later in life.  What that risk is ranges from 6%-15% based on the literature, but the data is inconsistent because very few giant nevi are alike.  This implies a sample size too small to establish a statistically significant or accurate % rate.  The doctor took some pictures and told us to keep an eye out for any changes in shape, edge texture, or any other change at all because that could be an indicator of irregular cell growth.

So what are our options? We asked the doctor.  You can have it removed or leave it and take the risk of needing to remove it later in life due to irregular cell growth.  So we talked briefly about getting a recommendation to see a plastic surgeon at SLCH to see what that involved.  So we were back to St. Louis four weeks later.

My Giant Congenital Melanocytic Nevus

A giant congenital melanocytic nevus is essentially a mole and a giant one means its big, which means it carries additional risk for melanoma.  The more abnormal cells the greater the risk.  Congenital means present from birth.  Melanocytic means a concentration of melanin, which is skin pigment.  Nevus is doctor talk for mole.  

"C", our son, was born with one of these on his head. 14cm in diameter.  (If you are not sure, it is the dark spot on your right just NE of his left eye.)  

It's one thing being an innocent bystander to witness a child with an obviously visible large mole.  As an anxious parent awaiting the birth of a child it's all the emotion of the "miracle" of child birth with a "HOLY $*@!" attached.(Not a huge "HOLY $*@!" just a small one as he is healthy otherwise.)

We are fortunate in that it is a singular mole.  Many times these are accompanied by dozens of satellite moles all over the body creating a different kind of challenge.  After a few tests "C" was cleared of any neurological melanocytic interference, which means the issue is only skin deep.     

As parents we were confronted with all kinds of questions.  Is it cancerous?  Are there other risks?  Can it be treated/removed? What are the options in an age of swift medical tech advancement?  So we embarked on a series of doctor visits for fact finding.