Thursday, April 30, 2009

Drew's Story: Fighting Cholesteatoma

Andrew is that one child in the house that can get into anything! He touches, tastes, moves, holds, and tears up everything. He's only 2 but I am sure he has rearranged and caused more damage than some of the other children combined. He's curious by nature. So it was no surprise to me one day when I walk in my scrapbook area and find him sitting in a pile of old polaroids. He looks up at me smiling with a black tongue. He was pulling them apart and licking the insides. Well, accustomed to the things he gets into, I simply clean up the mess and think nothing of it. Later that evening my husband and I notice some swelling on the right side of Drew's face and a little drooping when he cries. Armed with all the knowledge of the world at my fingertips, I begin to google the chemicals in older polaroids. I find nothing that says it would cause these symptoms. I call poison control and they reassure me that he's probably just a little congested from a cold but they are certain these symptoms are not related to the licking of the polaroid....... Whew!
Its the weekend and outside of the inconsistent drooping when he cries, he seems to be his normal self. He's terrorizing his siblings and bringing the usual chaos to our home. My sister, a nurse notices and calls a Dr. friend of hers who says he thinks the drooping is caused from pressure from a cold also. Content for now with these two opinions we move on through the weekend planning to see our awesome pediatrician first thing Mon. morning.
Monday rolls along and we make our way to the peds. office. She checks everything out and says he has the worst ear infection she has ever seen. She confirms that the swelling and drooping is most certainly caused by the ear infection. So I feel relieved that the damage wasn't caused by the licking of the polaroid but horrible that my son has apparently been walking around for God knows how long with an ear infection. What kind of mother am I to not notice my son's pain? My pediatrician schedules an appointment with an Ear Nose and Throat specialist for the very same day. We leave one doctor to see another and the entire time I am beginning to feel really crappy about my mothering skills. I mean he's baby number 6, I should be a pro at it by now!
The ENT takes one look and says "This little guy is going in for surgery, today." He later explains that the pressure from the ear infection is paralyzing the facial muscles. Frantic on the inside, calm on the outside, I call everyone. There were schedules to be rearranged, I had children in school and 2 a friend's house. I would need all the help I could get b/c after missing so much I couldn't leave Drew's side.
Well, let's jump to the surgery....They prep Drew for surgery and tell us it would take all of 15 min., and he would be going home the following day. My husband, father, and I sit waiting in a serious by joking mood. The surgeon comes out almost 15 min. later with a very serious look on his face. I should have known then that look was not to say that all had gone well in the surgical room. He had come to explain that what he found was not an ear infection, but something called a cholesteatoma (say it with me cho-Less-t-a-toma). It was formed in the womb. Essentially, its a collection of skin cells growing in the wrong place that just continue to grow and grow and can destroy what it attaches itself to. Well Drew had this thing growing behind his ear drum for the past 2years! The Dr. instructs us to stay off of the internet googling it, he didn't want us getting nervous and scared but Drew would be in the hospital a couple of days and would require several surgeries to remove all of it, and we could expect some permanent hearing damage and possible permanent nerve damage. Not what I was prepared to hear at all! It was at this moment that as a family we took a moment to pray and seek God's mercy. Everything needed for Drew was out of our hands. I think as parents we all face a time where we realize that while we are the ones responsible for the care and love that our children need, there is so much more that we can't control.
Thankfully the next morning the same surgeon comes in and informs us that he feels Drew's case is beyond his expertise and refers us to a specialist in Chapel HIll. The surgeons there lovingly cared for Drew before and after his surgery. So far Drew has only had one surgery and is scheduled for his second one. Dr. Adunka and his team were able to successfully remove all of the cholesteatoma the first time, but unfortunately it had eroded all the ear bones in Drew's right ear and caused a small amount of damage to the ear drum. The second surgery this summer will be to check for new growths and reconstruct the ear bones. Since then Drew has regained function of those facial muscles. I have now found out that there are many out there who suffer with the same condition but few websites dedicated to informing folks about it. I am thankful that Drew was guided to the expert hands of Dr. Adunka and spared the irreversible damage that many suffer due to the lack of knowledge and information on this condition. Drew is a blessed child because so many require 3-5 surgeries, never fully regaining control of those muscles or their hearing. So.....this is our family's story on Drew's cholesteatoma journey.


  1. Wow! What a story! I hope your son will continue to recover! I will be praying for him and for your family!

    Thank you for stopping over at my blog today!

  2. I'm glad the first set of doctors got you to Dr. Adunka like that. I've heard nothing but good things about him. Tell Drew he has my best wishes.

    Matt of Three Cholesteatoma Surgeries
    Pittsburgh, PA

  3. wow- i can only imagine how scary that was- i am shaken right now!! i am glad that he seems to be doing so much better. so is hearing going to be ok? earlier this year nicholas had a really bad ear infection and i did not notice at first- and like you i felt soooo bad when i thought about the pain he must have been in when it is my job to recognize these things. so glad things are better!

  4. Great Post Court this was a really humbling time in our lives because there was nothing we as parents could do to help Andrew but be there, pray and trust in God. And as always he came thru Praise God.

  5. Oh my Gosh! What a story! I was so tense reading all of that. I can barely imagine how you felt having this hit you all at once! We had to get our 18 month old (then) tubes in her ears, and that is such small potatoes compared to the scary scary stuff you just went through! I am so relieved that things are going so well already! He got into the hands of a really good Dr., his face is already back to normal and not drooping, and they got it all out in one surgury! Thank the Good Lord! I will kiss my babies again tonight, and know how blessed I am for this moment:)

  6. Thank you for sharing this story. Your family is in my thoughts!

  7. Mommy and them,

    You are what we call a mama shujaa - a courageous mommmy...thank you for chronicling the story for us. I trust that all will progress well.

  8. Thank goodness Drew didn't have to go through so many surgeries and that you were sent to such a good surgeon. I understand what it is like to have something like this thrown at you from out of nowhere and it is never easy, but we moms are strong and can deal with whatever comes our way. I hope Drew continues to do well and the next surgery goes well too.

  9. I've never heard of that condition before. I'm so glad that I found your blog and was educated! I can't imagine how nerve racking that was for you to go through. I hope his follow up surgeries go well and that he won't suffer hearing loss! He must be one tough kid!!

  10. Man, I couldn't imagine from what you think is a cold to surgery that's alot to deal with. In every situation there is only so much we can do and the rest we have to leave in God's hands. I will keep your family in my prayers. and thanks for sharing, it was really touching.

  11. Wow - that's incredible. A simple cold to surgery in a matter of days. Kudos to you Mommy for holding it together!

  12. I'm so glad to hear that Drew's surgery went well and he's already doiung better than most!! I will keep him (and the rest of you Artis')in my thoughts and prayers! Please continue to update us on him!

  13. Wow, I was on the edge of my seat reading this and I felt so awful for you and Drew, but I'm very glad that he's come out of it so well. What a trooper! Also, are you talking about Chapel Hill in NC? I'm in Charlotte :).

  14. Poor Drew. Thankfully he won't have to have as many surgery as most kids.

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