Monday, June 4, 2012

owen and microtia; ENT consult

Well, hello there to those of you that take interest in my sweet little boy, Owen!

He's just about 8 weeks now and we have been proactive since birth about exploring options for our little man and his RMA (Right Microtia/Atresia).  Some of the greatest resources I have found in my online quest for information was the honest experiences of families documented on blogs kept by other moms just trying to do right by their children.

So, for the sake of documenting our journey, thinking out options and for all the new momma's out there that are sitting in a hospital room googling "microtia," cradling a newborn, and hoping to find info- I write this for you as well as us.

those lips!  that hair!

Well, since our surprise at Owen's birth we have had a consultation with a local ENT (ear, nose and throat Dr).  That consultation happened when Owen was 2 weeks old at the Pediatric Ear, Nose & Throat Specialists, affiliated with All Children's Hospital.  This Dr. was the one who confirmed that Owen has grade 3 Microtia in conjunction with the absence of an ear canal (aural atresia).

Their information was very preliminary in nature.  A lot of "we will see.." and "it's hard to tell this young...".   Looking back, I was so annoyed by this.  Also looking back, I realize I was terribly hormonal and Owen was only two weeks old.

Owen is 7 weeks old in this pic, not 2 weeks old.  He is not of giant size.


Basically, the information I got was:

-Owen will need to be older to receive a CT scan to see if he is a candidate for atresia repair (aka, build an ear canal).  So we will not know for quite some time if he will be able to have this surgery.  This ENT does the scans around 5 years old.  (However, some other Dr's recommend around 2.5 years old). Candidacy for this ear canal surgery will depend on how developed the bones and structure of his middle ear are.

The interesting thing about microtia is that although there is a deformity in the outer ear- the inner ear develops in utero at a different time and 99% of the time these children have a normal (able to hear!) inner ear.  The middle ear is the key- for some kids, its only mildly deformed, for others it is not able to be repaired.

If they can do the surgery it has the potential to restore hearing to normal levels.  Isn't medicine amazing?

2/3rds of children with Microtia sleep on their "good" ear to shut out noise.  Not our boy- he likes to hear the world!


-This ENT recommends a prosthetic ear.  He didn't really entertain my questions about reconstructive options.  This threw me off quite a bit.  My thoughts were that a prosthetic would be a last resort if an actual ear cannot be built.   His concerns about reconstruction is that he feels they do not hold their form over the course of the lifetime and are not as pleasing aesthetically.  He mostly discussed how he does not recommend rib graft (building an ear from rib cartilage) because he does not like their look.  (His opinions, not mine.)

When I brought up the Medpor technique, which is a newer method of surgery involving a synthetic implant, he did not seem to have as much information or at least not as strong of an opinion. 

Also important to know that the building of an outer ear (whether it be Medpor, Rib Graft, or a prosthetic) can be done for Owen cosmetically even if he is not a candidate for atresia repair.  The cosmetic procedures can be done independent of functionality.  

Although years away- I don't mind asking for good vibes, prayers, or wishes at 11:11 now that Owen is a candidate for ear canal surgery.  (60% are...of course meaning, 40% are not).  Never too early to start keeping fingers crossed!

I was so sad after our ENT visit.  I wanted more time to sit and discuss options, hear about previous patients and explore options (did I mention I really wanted to know about our options?).  I know this is not how Dr. visits go when decisions are still years down the road and are not life threatening. But this is my son and he deserves time and options.

But then the lightbulb.  

Thank goodness for Aha! moments.

There IS more time.  I can get second opinions (and third, and fourths if I want).  I can talk to the best specialists in this country.  I can be an advocate and researcher for my boy. I can pray and ask God to open and shut doors.

Thank God for time. and options. and Owen. I am so in love with this boy.


And you know what?  He IS absolutely perfect.  He's teaching me things too.  I knew this from day one, but so cloudy with emotions, it was hard to really feel it.  What a waste all those tears were the first couple weeks mourning his ear.  He is absolute cuddly perfection.  I really mean that.  We may cosmetically fix his ear to streamline him into what the world considers "normal" if we can help his confidence, prevent bullying, etc.  But he is so amazing just as he is.

Since that two week mark things improved greatly for me emotionally. I was never in the full throws of self-pity, but I had my moments.  My post-pregnancy hormones have faded away and instead of feeling weepy and googling worst case scenarios, I have put on my big girls pants and hit the ground running.

This past Saturday we had an hour and a half Skype consultation with a Dr. from California, Dr. Reinisch.  He pioneered the Medpor technique for microtia and is a specialist in pediatric craniofacial plastic surgery.   From what I have read on many mommy blogs- he is simply the best.  So far, I am feeling this blog may mirror their acclamation's over time.  We will see.

 More information about our conversations coming soon! 








2 comments:

  1. Love that boy, and love his super smart and resourceful mama!

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  2. Just came across your blog, my daughter Ashlyn is 13 wks old with bilateral microtia and atresia. We are doing a skype consult with Dr. Reinisch this Saturday so I enjoyed reading some about your consult with him. Your boy is adorable!

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