A Broken Heart

35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Wednesday, January 29, 2014


The last time Turnip had major surgery was the first time I worked with a health insurance company.  I found the process of requesting prior authorizations confusing and the uncertainty frightening.  I was already pregnant and overwhelmed by Turnip's diagnosis. Learning to navigate the unfamiliar terrain of the health insurance system added another layer of stress.  I felt overwhelmed by the number of people I had to call to make sure 1) Turnip would be receiving the best possible care and 2) our insurance company would pick up the tab. 

This time around, the process has run much more smoothly.  Much of the difference had to do with my expectations and my understanding of the system.  This time around, I knew we would need to get approval for the surgery.  This time around, I knew that I would need to get Turnip's doctors to support whichever treatment we decided to pursue.  This time around, I knew it would all take longer than expected and I believed that the people who were representing our case to the review board would truly advocate for us.  I believed this because I saw it happen last time. 

This time, I also knew that I needed to have a plan and have very good reasons for everything I requested.  I prepared before I made that first phone call.  I had lists of questions and lists of requests.  I stayed calm.  I was polite but very direct.  I asked for what I believed was in my son's best interest.  I did not apologize for my requests.  I pictured the person on the other end of the phone as a person, doing her job, not as an adversary. 

Yesterday, Turnip got his pre-authorization for surgery.  As I talked with the insurance representative who had taken the surgery request to the board of review, she mentioned that his case had been fairly straightforward and easy to manage.  In the course of studying out treatment options for Turnip, I had jumped through every hoop they might have asked of us.  All of Turnip's doctors were on board with our treatment plan. Everything was well documented.

I am glad that this part of the process went smoothly.  Now we have three surgery dates from which we can choose.  Now comes the hard part.

Tuesday, January 14, 2014

I am broken and I find it hard to breathe

Today, while I was driving to work through a light fall of snow, the song “Wrecking Ball” came on the radio.  Like many other people, I misheard the lyrics: “I never hit so hard in love before.  All I wanted was to break your walls.  All you did was break me.” What I heard transported back in time to a similar snowy winter day five years ago.  

At the time, my family had been split between two cities for nearly four months.  I’d recently survived a serious medical scare, my son was fighting for his life, and my daughter and husband were at home, 100 miles away.  As I slowly walked through a light dusting of snow up the sidewalk to the Ronald McDonald House in Milwaukee, I thought about something a friend had said a few days earlier.  Exhausted at the end of a long day wrangling her three small children, she exclaimed, “They’ve just about pushed me to my breaking point.”  

As my feet carried me along the unfortunately familiar path, away from my son, my mind settled on that earlier conversation.  For the first time in my life, I paid attention to the words in the phrase my friend had used.   I thought about the idea of a breaking point.  I wondered what it means to reach one’s breaking point.  What happens afterwards?  And then it hit me, after you reach your breaking point, you are broken.  My friend might be nearing her breaking point, but I had long since passed mine.  I was broken and I found it hard to breathe.

In the years since then, I have realized that I am not alone.  I believe that we are all broken in some way or another.  Resilient creatures that we are, most of the time we can move through our lives without paying much attention to the fine network of cracks covering our souls.  Most of the time, we are not even aware that they exist.  Then, our circumstances change, the earth moves beneath our feet, and those cracks burst wide open. 

Right now, my family is gearing up for another challenging season in life.  As I orient myself to our new reality, the everyday landmarks by which I’ve navigated for the past few years are no longer adequate.  The landscape of my life has changed.  To navigate this new environment, I must shift my focus from play dates and bedtime stories to surgery dates and age-appropriate explanations of complex medical procedures.  The thin veneer of normalcy covering my family’s everyday life is wearing thin, and the barely healed wounds on the surface of my soul have opened up again.  I forgot how much it hurts to be broken.  I forgot how hard it becomes to breathe.

For the past few months, my son has been in a volcano phase.  I have checked out books at the library for him.  Together we have watched movies about volcanoes and volcanologists.   He draws picture after picture of the steep sides of cinder cone volcanoes, wreathed by smoke and crowned with pyrotechnic displays of hot gas and rock.  

While the explosive force of this class of volcanoes has captured my son’s imagination, I am drawn to the image of slower moving lava flows.  As the molten lava creeps downhill, a thin skin of hard black rock develops on its surface.  Through cracks in this thin skin, you can see the incandescent glow of fiery rock at its core.  The steeper the slope, the faster the lava flows, and the more cracks develop.  On flat ground, these flows stagnate and their surface gradually thickens, eventually extinguishing the fire at their center.  

I feel like one of these lava flows.  During the first year of my son’s life, the terrain was steep:  my emotions ran high, clearly visible through cracks in my fa├žade.  Then, for about four years, the terrain became flat.  My skin had a chance to thicken.  Those cracks nearly disappeared. Recent seismic events have once again shifted the ground beneath my feet: what was once a nearly flat plain has become a steep slope and like those faster flows, I feel raw and dangerously exposed.  

As our family moves with increasing speed towards the crucible of my son’s next open-heart surgery, the surface of my soul is cracking wide open.  My love for my son has once more transformed into liquid fear: both brilliant and terrible to behold, my molten soul hot enough to vaporize any hand that unwittingly touches its surface.  I am broken and I find it hard to breathe.