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)

Tuesday, April 8, 2014

how and when we chose to tell Turnip

Since October, I've been trying to figure out how to tell my son about his upcoming operation.  Most resources I've found have suggested not telling a child until the operation in immanent.  So, for a one year old, you'd tell them the day before, for a two year old, two days before, etc....  The rationale was that telling them earlier simply allows them to worry....and the children don't have the memory or mental capacity to prepare for something months down the road.  While I can see the value in this strategy and I use it sometimes, I have chosen a different option when addressing this surgery.

We have always been open with our son about his heart.  He has a baby album just like his sister does.  Only his album shows him in the NICU, prepped for surgery, post-surgery with his chest propped open and wires and tubes sprouting off of his body.  He has seen himself intubated, with drainage tubes and with an oxygen cannula.  In those photos, his is rarely alone.  He is usually being held or caressed by someone who loves him.   Our son knows that he has had surgery and he knows that he will have more.  That is simply part of his life. 

We have told him that his body did not grow a blue tube when he was growing inside of me.  We have explained to him that when he was a baby, the doctors gave him a baby-sized blue tube, but that as he grows they doctors will have to give him a big-boy part to help his heart work. 

A few months ago, discouraged by winter, my son told me that he wants to sign up for soccer again this summer.  In that moment, I had to decide: do I lie to him and tell him that he can play soccer this summer or do I tell him that he will be recovering from surgery and so will not be able to play soccer?  I chose to tell him the truth.  Even though he was initially angry (what kid would be happy to hear that they will get to be poked and prodded instead of playing soccer?), I am glad I did.

During the past few months, my son has brought up the subject on several occasions.  We have been able to address his fears and explain what will happen.  We've been able to explain to him that, no, he won't be getting intramuscular injections (he just got his tetanus shot), but he will be getting IVs.  I've been able to remind him of his last blood draw--how it hurt a bit when the needle went in, but then just felt kind of funny--and let him know that that is what the IVs will feel like.   I've been able to compare an IV to his father's insulin infusion set.  We've been able to talk about what he will take to the hospital and who will be there with him. We've explained that he will be asleep when the surgery happens and that the doctors will give him medicine so his body won't hurt.  We've assured him that we will be there when he wakes up.

By telling him early, we have allowed him to process the information and address his fears in a relaxed manner.  He has gotten through his initial resistance and now is treating his surgery as just something that will be happening.  With his projected in hospital stay (10 days) and in-home recovery (6-8 weeks), this surgery will have a major impact on our family's schedule.  Now we can talk about our schedule and introduce fun things that we can do during that time. 

Monday, April 7, 2014

my mask

A month ago, I realized that I am emotionally topped out.  My ability to calmly respond to the minor upsets in life has been dramatically reduced and my memory is shot.  My husband describes it by saying that I have a reduced emotional buffer zone.  When things in life go well, I have lots of energy left over to devote to non-essentials, like maintaining strained relationships, finding charitable interpretations for unkind behavior, or carefully monitoring my words and actions to conform to the norms of whatever group I am with, etc ….  Right now, my son’s upcoming surgery and other major changes in my life and my family have drawn down my emotional reserves:  I no longer have enough emotional energy to maintain a normal family life and do all of those other things as well.  

I no longer have the energy to maintain the mask I have worn in public all of my life.  I can either care for myself and my family or I can put on a show for the people around me.  I cannot do both.  It is both liberating and terrifying to leave the house every day as me, to not try to figure out how people will respond to me and hide those parts that may be confusing or disturbing or offensive to others, but rather to simply be myself.   

I am reminded of Paul Laurence Dunbar’s poem, “We Wear The Mask”

We wear the mask that grins and lies,
It hides our cheeks and shades our eyes,—
This debt we pay to human guile;
With torn and bleeding hearts we smile,
And mouth with myriad subtleties.

Why should the world be over-wise,
In counting all our tears and sighs?
Nay, let them only see us, while
       We wear the mask.

We smile, but, O great Christ, our cries
To thee from tortured souls arise.
We sing, but oh the clay is vile
Beneath our feet, and long the mile;
But let the world dream otherwise,
       We wear the mask!

Changes in my life have shattered my mask:  there are irreparable cracks on its surface.  For a few months, I tried desperately to hold the pieces to my face, to continue to act my part.  Finally, I have realized that I only have two hands.  I can either hold up my mask or I can hold onto the things that matter most to me.  I cannot do both.