December 29, 2011

The Feeling of Silence

“Silence is a source of great strength.”

~Lao Tzu

The fear started in July. I was back home in rural Nebraska to watch my parents serve as grand marshals of our hometown parade. My younger brother Kurt was home as well, with his wife Nicole and their two young daughters, Lily and Violet.* Kurt and I drove our parents down Main Street—all three blocks of it—while my sig other Chad helped Nicole watch my nieces wave at Grandpa and Grandma before gathering up candy thrown from the floats. Then we retreated from the sweltering 110 degree heat to enjoy a few beers in the air-conditioned comfort of our childhood home.

We talked for hours, catching up on local news, hearing plans for the farm, and reliving old family memories, while Lily and Violet played with the cornucopia of toys Grandpa and Grandma had purchased just for their visit. My nieces and parents all eventually made their way to bed, while the rest of us stayed up to talk. It was then, nearing midnight, that Kurt and Nicole shared with us their concerns about Violet. She was nearing 16 months old, but was small for her age and having trouble walking. A physical therapist was making twice weekly visits to work on Violet's balance and strength, but her lack of progress was worrisome. Yet, Violet otherwise seemed to be a healthy and happy young girl. It was probably nothing to worry about. Still, I worried, and I'm sure Kurt and Nicole worried even more.

The phone call came in November. But it was the voicemails that caused me concern. Kurt and I often go a few weeks without talking, then catch up with a lengthy call some evening or weekend. But the first week of November was different. Kurt and I exchanged messages as usual, but he called me mid-day to give me specific times to call him back. There was definitely something on his mind. So, I made the call that evening.

Part of the news was good. Kurt, Nicole, and my nieces were all doing fine. In fact, Violet had even been walking unassisted for a few weeks. Just that night she had made it all the way down the hall from the dining room to the living room on her own, under the watchful eyes of Buffy and Porter, the family dogs.

Unfortunately, most of the news was bad. Kurt and Nicole had for some time harbored concerns about Violet's slow development. Their fears dated back to Nicole's pregnancy, when Kurt had come down with a serious cytomegalovirus (CMV) infection. In most adults, CMV infection has few or no symptoms, while for a few people (like my brother) the virus causes symptoms similar to mononucelosis, causing fatigue for a period of several days to a few weeks. In pregnant women, however, CMV is the "C" in TORCH—the set of infectious diseases responsible for many birth defects. CMV is a particularly nasty virus for infants, leading in many cases to physical and mental developmental deficits, while also causing blindness or deafness in some victims. Still, in utero CMV infection does not always lead to problems for the child, and in a decent percentage of cases, the child goes through life with few or no problems related to the infection.

Violet was not among those fortunate enough to roll the dice and beat CMV. Although Violet had passed her hearing and vision tests at birth and had begun walking, she had yet to start talking or even babbling. Violet went in for a battery of diagnostic tests. Hearing tests raised concerns about compromised hearing. Sleep studies indicated either seizures (a common CMV complication) or a constricted throat (due to Violet's small size) were affecting her ability to sleep. An MRI of the brain revealed calcified lesions consistent with an in utero CMV infection. Still, nothing could be known definitively.

Surgery was scheduled for a few days after Christmas. The main purpose of the surgery was to remove the adenoids that were constricting Violet's throat, to help her breathe better during sleep. However, the surgery was also an opportunity to conduct a more sophisticated hearing test that required an infant to be partially sedated. The surgery was successful, and Violet was taken to recovery to awaken and be taken home that afternoon.

The otolaryngologist (ENT specialist) approached Kurt and Nicole. "Let's go into the conference room and talk," he said.

Nothing good ever follows that invitation.

The doctor was kind, but didn't sugarcoat the news. Violet is completely deaf. Her cochlea are non-functional. Deafness is an unfortunately all too common effect of CMV infection, sometimes apparent at birth, often developing before age 5, occasionally waiting to strike even into the teenage years. Violet is yet another CMV victim.

Medically, options are limited. Insurance requires that hearing aids be tried, even when doctors know they are useless. Cochlear implants are an option, but they tend to work better for people who have had hearing for a number of years and then lost it, while having poorer results for people like Violet who develop deafness early in life. Violet has been learning sign language for a few months, but my brother and sister-in-law face a difficult decision whether to pursue her education in a deaf or a mainstream, auditory environment.

Upon hearing the news, my initial feeling was sadness. Sad that Violet will never hear birds chirping on a hike with her family. Sad that Violet will never hear Buffy and Porter bark when she comes home from school. Sad that Violet will never hear the roar of a crowd, or the whispered sweet nothings of a boyfriend. Sad that Violet will travel alone in an auditory world.

I'm also afraid. Afraid Violet won't hear a smoke alarm or a car horn. Afraid Violet's education will be stunted by the communication barrier. Afraid Violet will face social isolation.

But, after further reflection, I'm also thankful. Thankful my brother is able to support his family and allow Nicole to leave her job to be at home with Violet. Thankful government programs exist to provide physical and cognitive therapy, and eventually educational opportunities. Thankful Violet has an extended family—two sets of grandparents; an aunt, uncle, and cousins in town; and even this more distant uncle—to provide love and support.

Mostly, though, I'm hopeful. Hopeful that medical science will provide Violet with some degree of hearing, whether now or a decade from now. Hopeful that Violet has escaped other physical or mental impairments that so often afflict infants with CMV. During my Christmas visit, I saw a girl who was climbing on chairs, playing with toys, serving fake coffee to her Grandpa and Grandma, and imitating her big sister, just like any other girl her age. Violet's deafness is something no parent would want for their child, yet, in the grand scheme of things, deafness is a disability that can be dealt with. There are plenty of parents who would gladly accept deafness for their child if doing so would cure their child of more serious physical or cognitive conditions. Most of all, I'm hopeful that Violet will grow up to be as happy as she is today.

My brother and sister-in-law are both civil engineers, and have already moved on to viewing Violet's situation as a problem to manage. I think their approach is absolutely correct. Violet's deafness is a challenge, not a tragedy. Violet is a happy, outgoing girl who is doing quite well despite her lack of hearing. Certainly Violet is going to face a lot of obstacles, as will her parents and sister. I have every confidence all of them will not only overcome these obstacles, but thrive in spite of them.

Violet loves her Christmas toys, but loves her
gift box even more.

Violet takes a moment away from cooking lunch for 
Grandpa and Grandma to flirt with the camera.


AFTERWORD:  There are many worthy charities out there. But, if you want to donate to charities devoted to research about and support for victims of birth defects, please consider making a donation to one of these organizations:


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* Names of my family members have all been changed to protect their privacy.

12 comments:

  1. I diagnose these kids quite a bit. Excellent write up.

    -DrC

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  2. Very well written. I have no doubt of Violet's success, surrounded with love as she is.

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  3. I belong to a service organization that specializes in helping hearing impaired and deaf children. The name is Sertoma (SERvice-TO-MANkind) and their headquarters is in Kansas City (not too far from Nebraska). There are also many local Sertoma clubs that are dedicated to this cause. Their website address is www.sertoma.org.

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  4. She is a beautiful kid!! Sorry to hear about her complications. I hope everything works out.

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  5. Beautiful and poignant post. I feel for you because of course you want this sweet little girl to have as few challenges as possible. Take heart in knowing she's surrounded by love and her possibilites are endless.

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  6. A guy I work with has a son with implants. If your relatives want a contact who can help provide them with tons of information, let me know.

    The son, btw, is playing high school basketball and has high hopes for a college basketball scholarship. He has been featured in many news stories in many media including: http://m.espn.go.com/wireless/story?storyId=6125964&wjb

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  7. As always, your words do a great job of drawing the reader in to the situation. My best wishes for your family.

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  8. Pulling for your family, my brother. And hey, you have a new project: you get to learn AMESLAN...

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  9. Very well written piece, I'm sorry for the difficulties your niece and family are experiencing, but am also hopeful that there are some additional breakthroughs over time.

    I can add a bit on the Cochlear implants at least from experience, my wife lost her hearing about 3 years ago in one ear (virus that affected ear drum). It's worked although hers replicates sound and echos it from the good ear. She rarely uses it as it proves more difficult to distinguish volume with it.

    Again, I understand it's a totally different circumstance for a child with no hearing and looking at options. My point I guess is that I would suggest patience to the family in reviewing options, while non are non-reversible, given that you are looking at development for her, it probably doesn't hurt to explore things fully. My wife while in a different situation, would probably decline the implant if she knows what she does now.

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  10. My uncle was one of the first to receive a Cochlear implant several years ago. He did regain some of his hearing but it has not come without some issues.

    Make sure the family gets in touch with local support groups, I know I benefited some from seeing other kids with hearing disorders/deafness.

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  11. My son was born a series of issues, including deafness (which was treatable with a hearing aid) and scoliosis (which led to him not walking until he was almost 19 months old).

    I think it's great that you and your family are supportive and although this sounds cliched, that support really is the most important thing in the world. Violet will grow up with advocates who will fight for her rights and family who will learn sign language and a whole network of people will dedicate themselves to scouring the news for new scientific developments that may help her. Even though the doctors will know more medicine than you (plural), it's ultimately the family that will do the most good because it's the family that has the motivation to see her succeed.

    Also, the Internet is full of surprisingly helpful resources. My wife actually found Facebook groups which connected the few hundred people worldwide who shared my son's condition; there are a few LISTSERVs that have been super-helpful as well.

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