When Labels Don’t Stick

October 15, 2014 Carrie, hearing loss, hemifacial microsomia, microtia, sedated ABR, Sensory System 4 Comments

It’s been a year since I paused while writing a post for this very site and glanced at the photo-listings for children on our agency’s website. And I saw her.

It was a morning exactly like this one. I was up early, before the sun came up. The cup of coffee growing cold beside the keyboard because my fingers wouldn’t stop to pick up the drink. Pouring out my heart before starting the day. Writing for me comes in spurts… sometimes the words won’t stop, and sometimes it’s like my heart needs to take a deep breath. And so I find a song on YouTube or check my email or read a news story… or that morning, I did something I’ve rarely done. I checked the waiting child listings for our agency’s site and sent a quick little email.

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The start of it all.

Some mamas talk about “knowing” from the moment they saw a picture that a child was destined to be theirs. That wasn’t me. I felt guarded and uncertain and terrified. But curious. The curiosity was enough to trigger the email, but when in a few hours her file landed in my inbox, my heart started pounding in my chest and the only thought running through my head was the same one that I had the morning I held a positive pregnancy test… What have I done?! (Hopefully my girls, who I dearly love beyond life itself, will someday find some solace in the fact that my reaction to both of them was remarkably the same. I think things just take a while to really sink in, and though I fancy myself an optimist, when faced with BIG things in life I always imagine all the ways it could go wrong.)

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Our first glimpse of her.

And the ways this could go wrong were spelled out in black and white. She was a Special Focus child (read: generally more severe needs/harder to place) who made it to our agency’s photo listing because they couldn’t find a family who was open to her combination of needs in their medical condition checklist. (Including ours!) She had so many different diagnoses that her LOA read “complex special needs” rather than listing them all out.

But as we went through them one by one, our doubts about their accuracy grew and grew. Subarachnoid Hemorrhage? We felt like we could handle the worst case scenario of CP-like symptoms. Hypoxic Ischemic Encephalopathy (HIE)? How could orphanage officials know she was deprived of oxygen at birth when she came into their care about 10 days later? Premature? Maybe, but maybe just a 5 pound baby girl. Heart Defect? The diagnosis wasn’t a real thing and the problem the file described sounded like an imaging error to our doctor. She did have a minor hole in her heart, but it would likely close on its own. Microtia/Atresia? Yes, but this was something we knew we could handle. Deaf? Why was she labeled deaf when her file also described her turning towards sound and included a hearing test result that showed some hearing at least on her left side?

This isn’t a post about how files aren’t accurate or a “How To” guide on how to find a basically healthy child in the China Special Needs program while thousands of children with more severe needs wait forever for families. The reality is, when we got on the plane to China, we knew we might be handed a child who had the full-blown effects from all these diagnoses, plus more. (In fact, the “plus more” part proved to be true. She was never given a Hemifacial Microsomia diagnosis in China, but she does have it.) We were prepared, as best as we could be, for the “worst case” scenario while still hoping for the best.

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Moments before she was placed in our arms.

There are no words to describe the joyful terror that filled my heart at this moment. To be honest, mostly all I could think about were all of those scary medical labels.

And this last week, we were given the best news possible. Since none of her needs were emergencies, we waited to take her to a bunch of specialist appointments until she was more settled into our family and adjusted to life in general. After some misguided local attempts at getting the care she needed, we took the recommendations of families who’ve gone before us and visited The Ear Institute and The Craniofacial Center in Dallas, Texas.

After doing a sedated-ABR (a hearing test that measures brain response to sound stimuli), we learned that she has perfect hearing in her normal ear. (Not deaf like they told us in China or dealing with moderate hearing loss like a local ENT suggested.) And in her microtia-affected side, she still has hearing with any hearing loss most likely due to the fact that the sound isn’t able to enter the ear. For now, her ENT recommends not aiding her, as he said she is making good language progress and at her age, hearing aids would be more of a frustration and annoyance than a help.

Dr. Fearon, our Craniofacial doctor, talked about possibilities for ear reconstruction if she decides that is something she wants when she is older, and he told us her hemifacial microsomia is mild, unlikely to ever need surgical intervention, and that the CT films from which she received a subarachnoid hemorrhage diagnoses showed nothing of the sort.

“Files for the memory book,” he said.

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Peacefully sleeping through the test.

So just like that, all those labels fell away. She shows no signs of a subarachnoid hemorrhage, HIE or a heart defect. Was she premature? Maybe, but she’s growing like a weed and her development is ramping up. Deaf? Definitely not. In the words of Dr. Fearon, she’s a perfectly healthy little girl who happens to have one ear. All of her doctors and speech/OT therapists fully expect her to be on-target developmentally after a bit more catch-up time. And as of these consultations, we’ve been told that she won’t need surgery, hearing aids, checkups (for at least 2-4 years) or any other sort of medical intervention for any of her special needs… only possibly reconstructive cosmetic surgeries when she is older and has a say in the treatment plan for herself.

And as I sit here this morning, one year from the time that I first sent that email, I wonder at all the ways life might have been different if I hadn’t paused from writing to check the list. And I wonder at all the ways life might have been different if we hadn’t feebly mustered up the courage to see past all the labels. I don’t know what life would look like, but I do know right now she wouldn’t be asleep in the room down the hall. I wouldn’t know the sound of her laugh, her affinity for tortilla chips, or the way she likes to carry purses and wear bangles. And though the last few months have been hard, the thought of that leaves me feeling like part of my heart would be missing.

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This gal may be pint-sized but she has a larger-than-life personality.

And I wonder about the necessary absurdity of this process where families decide what conditions they can handle. Necessary, because we do need to take seriously the limits of our resources, time, energy, and medical access, yet absurd because who among us really knows what he or she is capable of until we are placed in the middle of a circumstance? And I wonder about all the children who still wait to come home – scary labels or not – and pray for their families to find them; for mamas and daddies who know labels aren’t definitions and who can move forward even with much fear and trembling.




4 responses to “When Labels Don’t Stick”

  1. Libby Fenn says:

    Just what i needed to hear about this morning! My husband and i just asked for more info about a child that has (to us) a scary diagnosis. Good to remember a child is more than a label!

  2. Megan says:

    Carrie, thank you for this beautiful post! Our son isn’t home yet, but we’ve experienced the same trepidation at his file and peace in every possibility. Our China son and our bio son both have HFM and other labels, some that we’ve seen fall away! Here’s my post from struggling with the file and labels vs. KNOWING he is my son no matter what! http://madeheirs.blogspot.com/2014/08/fear-doubt-and-names-of-god.html Your daughter is absolutely precious! Thank you for sharing your journey

  3. Jennifer says:

    Thank you, Carrie! I love this post and your words really resonated with me. My husband and I leave a week from today to bring home our little girl (also from our agency’s SF list). Her diagnosis is scary, but we know she is supposed to be with us and God will provide us with what we need to care for her!

  4. Stefanie says:

    Your story absolutely amazes me, Carrie. And I am so grateful for the wisdom you share regularly here at NHBO. But this post really speaks to my heart as we prepare to venture off to bring home our sweet Clementine. Thank you for sharing, friend <3

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