Thursday, January 31, 2013

Cleft Palate- The Referal Process

I mentioned in Emmalyn's birth story that upon initial exam, the pediatrician discovered a cleft palate.  Her cleft palate has been determined by 4 pediatricians to be mild, but will still require repair. 

The first pediatrician, Dr. B., came in to see us.  She's the one that initially told us about Emmalyn's cleft.  She said that at our first office visit, they would set up the referral work for us to go to UAB.  She stated that when checking Emmalyn's sucking reflex, she could feel the malformation, but had to get a flashlight out to see it.  She stated that Emmalyn might have some feeding problems, especially with breastfeeding, and might require speech therapy later.  Good thing I know an abundance of speech therapists, right?

Dr. B. saw us Tuesday, Wednesday, and Thursday in the hospital.  She was able to answer our questions as we came up with them, but really, I didn't have a lot.  The lactation consultant also came to see us several times in the hospital.  She provided us with feeding strategies and special bottles to use with Emmalyn.  The lactation consultant was able to show me Em's cleft palate without a flashlight.  It was much larger than I thought it would be based on Dr. B's description.

Dr. W.  discharged Emmalyn from the hospital, and he also reported that the cleft was very mild.    She was having some feeding issues at the time, but Dr. W stated if we could get an ounce in her every 3 hours, he would be happy with that.  We did manage that.    We called and made an appointment with our pediatrician, Dr. S.  

Before discharge, they gave Emmalyn her newborn hearing screening which she FAILED.  What?  I performed newborn hearing screenings in graduate school.  I know how common it is for babies to fail, especially csection babies, and what do I do?  Panic, of course.  I consulted my favorite doctor of all, Dr. Google, regarding  cleft palate and hearing loss.  For the record, there is a correlation between cleft palates and hearing loss. 

At our first appointment with Dr. S, he told us some great things.  The first was that Em was gaining weight, even if it wasn't as much weight as they wanted.  The second was that he thought we could have her palate repair done closer to home due to the mild nature of it.  The third was that we could keep doing exactly what we were doing, which was significant to me because it meant feeding on demand vs. waking to feed at night.  Don't judge.  I have a 15 month old and a newborn.  I'm in a state of permaexhaustion without waking up every 3 hours if I don't have to.

He also set us up to have Emmalyn's hearing rechecked.

SHE PASSED!! Thank God...

Our second appointment was scheduled to be with Dr. S, but ended up being with Dr. P due to an emergency at the hospital.  I really like Dr. P too, so I was down with this.  Dr.  P explained there had been some bumps in the referral process.  First of all, there is a group of doctors in a city about an hour from us that advertises cleft repairs, but none of the pediatricians in the area use them.  They all refer to Shands- Gainesville.   He then called around in another city about an hour from us.  He found one doctor who said he would, "try it."  Apparently, he's never repaired a cleft palate.  NEXT....

We finally got a referral to Shands Craniofacial Clinic for next Thursday.  

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