Once Upon A Prayer

Tuesday, September 4, 2012

Mackenzie's DIAGNOSIS!

Finally, after 17 agonizing weeks of doctor appointments, Mackenzie has a diagnosis.  It is certainly not easy news to digest, but Jacques and I are both relieved that we can now begin down the journey to healing our Mighty Mack.

Mackenzie has a left ear cholesteatoma.  This occurs as a complication from unsuccessfully treated, or in Mackenzie's case, untreated severe chronic ear infections.  The cholesteatoma in Mackenzie's ear is very infected and filled with old skin cells and other waste material.  Mighty Mack's cyst is massively large, and has already broken down most of her middle ear bones and other structures of the ear, affecting hearing, balance, and possibly function of the facial muscles.

The ENT who has been treating Mackenzie has only done this surgery a few times, and the youngest patient was 7 years old, and not nearly as badly infected as Mackenzie.  Within the next few days we are being referred to Children's Hospital in DC, which just so happens to be where Lily had her open heart surgery a few weeks ago.  As my mom put it, I will definitely "feel at home".

We are asking all of our prayer warriors to storm the gates of heaven for the doctors to have clarity on how to proceed with our little miracle girl who should clearly not be alive today.  The cholesteatoma nearly fills Mackenzie's entire left middle ear and extends through the attic into the mastoid air cells.  The cyst has caused a diffuse loss of bone as well as sclerosis of the inner and outer tables of her skull.  At this point the doctors will decide whether the surgery will be completed by an ENT or a neurosurgeon (or both).

On top of the left ear cholesteatoma, Mackenzie has patchy soft tissue within her right middle ear as well.  So, where do we go from here?  Surgery!

The primary purpose of surgery is to remove the cholesteatoma to eliminate the infection and create a dry ear. A second surgery is sometimes necessary both to ensure that the cholesteatoma is gone as well as to attempt reconstruction of the damaged middle ear bones in an effort to improve hearing.  In cases of severe ear destruction, reconstruction may not be possible.  Reconstruction of the middle ear is not always possible in one operation; therefore, another operation may be performed six to 12 months later. This operation will attempt to restore hearing and, at the same time, allow the surgeon to inspect the middle ear space and mastoid for residual cholesteatoma.

In rare cases of serious infection like Mackenzie's, prolonged hospitalization for antibiotic treatment may be necessary.  Mighty Mack will also need surgeries at some point to repair the holes she has in each eardrum.  From what we gather, it sounds like Mackenzie will be scheduled for multiple surgeries over the next few months to a year.

Go ahead and ask me 
if we would have walked down this adoption journey 
knowing how grueling and arduous it would be 
both emotionally and physically...


God has never felt closer as he does now.

How, you might wonder?

This is explained in 
Psalm 34:18.

"The Lord is near to the brokenhearted 
and saves the crushed in spirit."


  1. She is so beautiful! Hopefully you can get her the help she needs. Looking forward to following along. Blessings

  2. Sending love and prayers from Colorado! God bless you sweet girt!

  3. Awww, sweet Mackenzie is on her way! Wait till girlfriend grows up and shows the world what you little spirit has to show everyone! Amazing how diversity tends to do the opposite to these children...it makes them SHINE like stars!

    Can't wait to get my Analina home so we can watch her bloom, too!

  4. More than half the battle is simply knowing what you need to fight. Best wishes and many prayers!

  5. Found you via "Full Plate Mama" - I'm a mom to a little one with Microtia/Atresia and unilateral hearing loss of the right ear. Not a candidate for canalplasty or anything else for this season of her life. We use a softband bone conduction hearing aide for now and we're adjusting slowly but surely to the increased audio input.... Unfortunately, I haven't really blogged much about it as it was happening (the acclimation) b/c it was a rough transition for us and our girl struggled. But now that we have it under our belt well, we're feeling great about what it means for school and stuff. Started her first day of K today.

    All that to say, as you are processing and progressing, if you ever want a friendly ear to share your experiences, I'd be happy to chat. You can contact me via my blog.

    In the meantime, good luck :)

  6. Found your blog through Brooke Toering's blog and just wanted to say I grew up with perpetual ear infection after ear infection. Eventually a bad cholesteatoma formed in my left ear. After three major surgeries on my left ear and one on my right ear to clean it up before it became a full fledged cholestratoma around the age of 7. From 6 months to 15 years of age I had 13 ear related surgeries that ended with a final reconstruction tweak at age 15. I'm sure little Mackenzie's is worse than mine was. But... if she has half the results I had she will be quite alright. As 23 years old I have hearing loss (mostly due to a hole in my eardrum from a tube that never closed up) in my left ear, but nothing that interferes with my day to day life. Let me know if you have any questions!

    Tully Taylor

  7. Oh, Emily! Thank God they figured this out! Poor Mighty Mack! Just so thankful that she will have surgery and this will be repaired. Will be praying for a successful surgery and a speedy recovery!

  8. Hi, I'm Tasha and have started a parents site for cholesteatoma support. Please come by and join. My Lily is having surgery on Sept 14, and is 17 months old. Www.bornwithcholesteatoma.net.