Throw-Back Thursday, Or Countdown & Flashback to Surgery

Charlotte has been counting the days until her surgery. Last week, nearly every ride to school started with “20 days,” “19 days,” etc. Phil’s theory is that she is putting her life “on hold” until it is over and so that’s why she’s counting.

Another theory (mine) is that counting is her way of controlling the situation. In addition to counting, she came home one day last week with a sheet of paper on which she had written “Hospital Schedule, Day #1.” It was precious:

9:30 Wake up

9:31 Kiss m&d

9:45-11:30 Surgery

11:45-1:30 Watch a movie

I thought about this for a few days and then asked her about it.  She said it made her feel better to have a plan for the day so she wouldn’t get bored. I explained that the surgery would likely take more than an hour and forty-five minutes (Dr. Backer is a genius, but not a magician!) and that she might not be up for a movie afterword. She was, in a word, crushed. Until I told her could watch two movies on day two.

This morning Charlotte didn’t count down, so I did. I mentioned that in two weeks from today, the surgery would be over and she would be recovering. We talked about how day #1 of recovery might be the worst of it, like when you fall and the next day you feel really achy. Then she changed subjects (let’s face it Hasbro’s Equestria Girls is ever-so-much more exciting!).

In honor of Throwback Thursday, pictures of Charlotte on Day #1 of Recovery in 2005 and 2007.

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Cheating a little here–this may be just hours after the surgery.

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And this cute photo is day #2 of recovery in 2005. Her little scars ended up being so tiny that they were eventually covered with Snoopy bandaids.

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Day #2 2007

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Exercise Test

Dr. Young asked us to take Charlotte to Lurie Children’s for an exercise test prior to surgery. Since one of Charlotte’s reported symptoms has been “heart pain” when her heart rate accelerates, Dr. Young wanted to get a baseline understanding of how exertion is effecting her heart and lung function.  FullSizeRender

The test took about an hour. First, Charlotte had to breathe into a tube that didn’t look like any other breathing test I’ve seen. Once she mastered the skill, she had to blow the bowling ball to knock down the pins–yep, the device was hooked to a computer and she used her breath to operate a computer game.

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As happens with an adult “stress” test, the technician then hooked Charlotte up to the EKG machine.  Charlotte walked on a treadmill up an incline that increased in pitch and speed every three minutes. The goal was to get her to achieve maximum exertion, stopping when she could go no further.  She almost made it there–after about 7 1/2 minutes, the tube (into which she was still breathing while she walked/ran) had caused dry mouth that she just couldn’t handle, so she called “uncle” a wee bit early.

Breathing tube hooked up to computer, attached to a headpiece so she could hold onto the treadmill with her hands. And, yes, that's a nose clip to be sure she breathes through her mouth.

Breathing tube hooked up to computer, attached to a headpiece so she could hold onto the treadmill with her hands. And, yes, that’s a nose clip to be sure she breathes through her mouth.

The cardiologist–in the room reading the EKG while she did the test–said that preliminary results indicated a 71% lung function; most kids her age should have 80%. Best, news–no arrhythmia while she worked out, no reason for immediate concern (or emergency intervention), and NO PAIN while she ran.

 

Time for a Major Tune Up

I’ll cut to the punch: Charlotte will need open heart surgery to replace her conduit.

I can hear all of you gasping as you read that.  We, however, did not gasp. I think we would have been more surprised to hear that she needed only angioplasty based two things: (1) Her last repair was just about 8 years ago and back then the anesthesiologist said he thought we’d have 8-10 years on the conduit they put in; and (2) We both remembered Dr. Gossett telling us that he didn’t think he could balloon a second time. So, this time it was a matter of where the blood flow restrictions are.

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ILENE-0255 photos by Lisa Gottschalk

The MRI showed restrictions at the proximal point and through the right pulmonary artery (RPA). Given that the current conduit is only 16mm, she has definitely outgrown it. While they replace the conduit, the surgeons may also do some repairs to the RPA, which they did also in 2007. A larger conduit may allow easier interventions in the case of complications down the road. Moreover, she’ll feel better.

We’re hoping to schedule the surgery for the week of February 9 so that part of the recovery period can happen during our February school break (woo hoo).  We anticipate 5 to 7 days in hospital and another 1 to 2 weeks at home, followed by restricted activity. Followed by some sort of lovely vacation in April.

Before then we’ll have an exercise test (tomorrow) as a baseline. We’ll follow up with a post-surgical exercise test. There will be other pre-op tests as well, I’m sure. Check back here regularly–the blog is about to get busy again.

It’s been a month since Charlotte has been on a horse, and while she’s not riding right now because she’d like to do the repair first, she’s eager to get back in the saddle. Literally.

Cardio Update

We finally have dates for the diagnostic tests. Charlotte will have her MRI on January 9, 2015 and the stress test on January 13. In the interim, we’ll visit Nennene in Leuven, Bamma in NJ, and friends in Paris. Dr. Young has said she can participate in all activities but should refrain from overexertion. So, nothing is emergent, but it is still pretty scary.

Charlotte is torn between not wanting to miss school for whatever procedure and not wanting to miss vacation for it. On the one hand, she’s self-conscious about missing school. She doesn’t want the attention and the sympathy. On the other, she doesn’t want to miss vacation.  These are her concerns right now.

A little treat today–Charlotte as a star:

It’s #GivingTuesday. You know what to do. (Looks like a ticket page, but is donations only for now.)

Cardio Report

As I began last time the blog returned from a holding pattern to our primary mode of communication about Sprout’s heart, I want to start by conveying our deepest gratitude for the emails and texts you sent after my last update. It is heartwarming (pun, though bad, is intended) to know that you continue to read and check in after nearly 10 years and that you especially tune in to the truly important things.

We had an early morning appointment at Lurie Children’s yesterday morning. As usual, Charlotte had an echocardiogram and an EKG. Liz Cappella, Dr. Young’s amazing nurse practitioner who has cared for Charlotte since our PICU days, came in to take a history. We let Charlotte take the lead answering the questions and describing what she’s been feeling. The bottom line for me is that Charlotte has been feeling things in her chest and her heart that she’s never felt before. While she was matter-of-fact in her explanations, it became clear last night that she was terrified (more on that later; probably in a separate post).

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Charlotte watches “Cloudy With a Chance of Meatballs 2” during the echo. The technician (whose face I have inexpertly hidden per her request) had to keep asking Charlotte to stop laughing. Laughing, apparently, works well for photographs. Not so much for images made from sound!

 

After reading the tests, Dr. Young came in to tell us what she saw: Charlotte’s echo and EKG did indicate that the blood flow velocity through her pulmonary artery is limited and that there might be increasing stenosis. (There is more technical explanation to do with gradients and blood pressure; maybe we can get Dr. Young to post a comment and explain.)

We’ve been here before and we know the drill. This time Dr. Young is recommending more imaging prior to consulting with the cardio team, so we are waiting to schedule an MRI with contrast as well as an exercise test. Once those results are in hand, Dr. Young will conference Charlotte’s case with the whole cardio-thoracic team, including Charlotte’s surgeon, Dr. Backer; Dr. Jeffrey Gossett, the interventionist who performed the last angioplasty; doctors and nurse practitioners from cardio-thoracic surgery, cardiology, and cardiac critical care.

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Before they could get to the consultation, Charlotte and Dr. Young played Spelltower. Doc was quickly addicted and started batting Charlotte’s hand away from the screen. There’s a reason we love our cardiologist.

The bottom line, however, is clear: Charlotte will need an intervention. She will either have angioplasty or a full open-chest repair to replace the Dacron conduit, and probably the valve.

I’ll update more later with a compete download of the blood draw drama as well as Charlotte’s day of terror (from which she learned to put the iPad down and ask questions while mom and dad talk to the doctor).

I want to end on a personal note and congratulate Dr. Luciana Young on her promotion to full professor. If anyone has worked hard to earn that title, it is our friend and hero Luciana.


Six Month Checkup or Remember? Charlotte is a Heart Patient

Back in October I reported that Charlotte’s heart was doing well, but not as well as we would all like.  Dr. Young asked us to come back in six months to see if the numbers, specifically the diameter of her conduit and the gradient blood flow into the right pulmonary artery, were holding steady.  As the appointed date of the check up drew near, I once again held my breath. Charlotte has been growing like a weed and she’s been more tired than usual, The combination didn’t, in my mind, bode well.

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November 2013: Phil’s goofy beard courtesy of “Moovember”

Last week, I roused Charlotte earlier than usual and we headed to Lurie Children’s Hospital for our 7:30 a.m. appointment. Charlotte had an EKG and an echocardiogram, as usual.  The pressure across her conduit measured at a 52 degree gradient. With blood pressure at 100, that means that her gradient is about half of her systemic blood pressure.  It is roughly the same as our September visit and a bit higher than Dr. Young would like. Since her EKG and echo looked about the same; neither the valve nor the conduit seemed to be leaking; and there was nothing in her physical exam to cause alarm, Dr. Young said we could come back in a year for our next check up.  When that gradient hits 60 or above, we’ll have to discuss another catheterization and, possibly, a “conduit revision.”

Good thing Charlotte didn’t quite pick up that “conduit revision” means surgery; she was too busy telling us how horrible her leg felt after the last catheter procedure and that the only good thing about that night in the hospital has been that she got to eat breakfast for dinner (score 1 for the 24 hour “room service” at the new hospital!).

My heart thumped in my throat when I heard “conduit revision.” When she was a baby, she wasn’t scared. It's Almost Moving Day! Prepare to be AMAZED.She just toddled in to the hospital, charmed everyone around her, woke up groggy but smiling, and kind of forgot the whole thing rather quickly. Now, my lovely almost 9-year-old will get it and be scared.  And I fear the day she hears Dr. Young say that it’s time to consult with Dr. Gossett and Dr. Backer.

This is Charlotte’s reality–she will need more heart surgery, probably sooner rather than later.  In January 2005, Dr. Cuneo of RUSH Northshore told us that she might need as many as 3 valve and conduit replacements. She estimated–based on growth spurts–18 months, 7 years, and adolescence.  We eked out to 20 months and 7 years old is long since passed. So, I hold my breath and probably will continue to do so until it’s time to forge ahead, and be strong for Charlotte’s sake.

Now, for the important numbers: Since her last check up (remember, October 2013) Charlotte has grown TWO INCHES. She is now 4’9″. (Or was last week. I think she sprouted again recently.)

And now a word for our sponsor: Join Charlotte, Philippe, and I as we Move for the Kids on May 18. Team Charlotte will join the Children’s Service Board and work to make the CSB the leading fundraising affiliated organization for the third year in a row. I’d love for Team Charlotte to lead the charge–so if you even if can’t walk, please click on the image below and make a donation in honor of Charlotte, or your own favorite heart patient :-). We’ve built a new hospital and now we need to keep the philanthropic funds coming in to assure that Lurie Children’s Hospital continues to be one of the best in the country. Thanks!

Raising Awareness and Fighting Congenital Heart Defects

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Charlotte’s Mended Heart (10/25/2013) photo credit: Dr. Jeffrey Gossett

(Full disclosure: This is a re-post of last year’s Congenital Heart Defect Awareness post except when noted by **)

In January 2005, our world was rocked and we thought it might come to an end. That was when Dr. Rudy Sabbagha informed us that our unborn child had a congenital heart defect. He was pretty sure that the specific defect was tetralogy of Fallot (*That’s what Shawn White was born with*). As my high school friend’s daughter, then 13-years-old, had survived a one-time repair for that defect and was thriving, I was relieved.  We later learned that the defect was Truncus Arteriosus, a far less common heart defect.  We also learned that only 50% of babies are diagnosed in utero with TA, so we felt lucky, in an odd way.

Our first online searches for support and information were unsuccessful.  Eventually I gave up looking. I started this blog, putting our emails online at first and then updating as we went for prenatal visits, when Charlotte was born, and throughout her surgery.

And then people began finding me and Charlotte. The first time a family posted a comment about TA, I got chills. Over the years we’ve collected about a dozen comments from parents who have found comfort in Charlotte’s story. Some of them have their own blogs and I try to keep up. Some of them stopped writing their blogs, and I feared the worst.

Today I want to highlight two people we have met through this blog, people whose CHD stories have changed my outlook:

Francie Paul gave birth to a healthy baby boy in August 2005. Or so she and her husband Brian thought. A few hours later, Joshua began turning gray, his oxygen levels plummeted, and he was rushed to Children’s Memorial Hospital.  The doctors determined that he suffered from severe complex congenital heart disease, which is a combination of several CHDs, and at four-days old, Joshua had open heart surgery. He had another surgery at about three months, and another near his third birthday.

Francie and Brian found themselves shaken and changed. They could have retreated to their home and become insular, handling Joshua’s medical issues privately. But they did not. Instead, they asked the doctors, “What can we do for other children with CHD?” They were told that the greatest need was research funding. So they began raising funds and in 2007 founded the Saving tiny Hearts Society.  Each year, Saving tiny Hearts donates its funds to a particular research project that is chosen by the medical professionals who received the previous years funds. In that way, the medical researchers choose the most important and promising research, and the philanthropists do what they do best, raise awareness and funds.

Francie somehow found our blog and called me. She has been not only a shining example, but a steadfast friend, touching base when she knows Charlotte has a surgery or procedure. She’s a pretty intense mom and person, and I admire her tenacity and drive.

As Brian notes in the Parade interview linked below, very few 35-year-olds have severe complex congenital heart disease, and very few 45-year-olds have Truncus Arteriosus.  We don’t know what the future holds for our children. We do know that there is a chance that either Charlotte or Joshua might need a heart transplant in their twenties or thirties. (I don’t like to think about that and don’t talk or write about it very often. I keep faith in the fact that her heart suffered no damage prior to surgery and we’ve had no complications between surgery. Joshua has been similarly healthy, thank goodness.) Brian and Francie have decided to aid the future by funding promising research and I applaud them.

Jessica Renshaw Hargis: Jessica is a young woman in her mid-twenties who was born with Truncus Arteriosus. Like Joshua, she was born seemingly healthy and was rushed to the hospital when she turned blue. She had her first repair at three weeks old and her second at three years old. After that she had few complications that I know about. Jessica found us when she was about 23-years-old. She was getting ready for her third repair (a valve and conduit replacement, or what we call a “tune up”) and was just beginning to wrap her head around managing her own health care. She was, in fact, having elective surgery so that she could do it while still well-insured.  Jessica had some post-surgical complications after that surgery (in 2009), but is largely doing very well. We had the pleasure to meet her in August 2009 and it warmed my heart to see Charlotte talking to a grown woman who shares her experience. While Charlotte and Jessica are as different as can be, they share something that we can never share–the understanding of what it is to live with a mended heart. We treasure our relationship with Jessica and her mother, and the friendship they reached out to give us.

*We are never not  aware of congenital heart defects at our house, though Charlotte says that she sees her scar and it feels more like a birthmark to her.  When Charlotte complained of reflux last night and told me she had sharp pains in her chest, my first thought was “Well, we haven’t had a heart-related emergency room trip yet. I guess tonight’s the night.”  Fifteen minutes later she was sound asleep. Today she told me that she knew it was reflux and that I shouldn’t worry about her heart unless she tells me to worry.  She, in fact, has the biggest, most generous heart I know.*

*Please consider linking to Saving tiny Hearts Society and making a donation in honor of the 2 to 3 out of every 1000 children born with a broken heart. Today they live and thrive because of research that groups like StHS helps fund*

Related Links

Why I Blog (about Charlotte)

Sometimes I feel as if I’ve become that clichéd blogger, you know the one who is really prolific at first and then can’t continue. Or, that the only things I think about blogging would redefine this blog as a “Mommy Blog” (and I contend that it is only tangentially that).  I am pretty sure that my formerly most avid readers don’t check in that often anymore, using the blog as a customized Caring Tree (medical update platform) and checking in only when there might be a medical update.

Recently, however, I received two comments on the About page which reminded me of why I blog, two mothers whose children (ages 1 and 8, respectively) are CHD patients. One is even a truncus patient. Both sought to get in touch with me, to ask questions and commune with a parent who knows what they are going through.

At the same time,  WordPress’s The Daily Post asked us about who we blog for. So I’ve been thinking a lot about why I blog, for whom, and who my reader might  be.

When I started the blog in 2005, I blogged for family and friends who wanted up-to-the minute information about Baby Sprout while I was pregnant. Once she was born, they wanted to know about Charlotte’s surgery and recovery.  I started with email updates. Then my mother noted that she was forwarding them to her friends who also wanted updates. She suggested a blog. I said, “Mom, do you know what a blog is?” She said, “No. But you should have one.” Never one to defy my mother, I started Charlotte’s Journey Home.

My intent was to blog for family and friends to keep them informed. We were adamant that no one should visit because we didn’t want people to remember Charlotte as a tiny tube-filled creature.  The blog brought my readers into the hospital with us, with gory detail sometimes, and it spared me having to rehash details in individual phone calls. When I tapered off, my brother would bother me to update more often, especially with new photos.

While Charlotte was in hospital in 2005, I realized that I was blogging for myself as much as for anyone else. I had a difficult time bonding with Charlotte at first because I was so afraid. I took 17 rolls of photographs–documenting the gravity and joys of the situation. But, truly, I was using the camera as a lens through which to see my darling baby because sometimes looking at her without the lens hurt too much. The camera and the blog helped me process it all. And at 2 a.m., writing the blog helped me clear my brain so I could sleep.

And then came the first message from the parent of a child born with truncus arteriosus and another from the mother of  child being fed by a g-tube. Then a message from Francie Paul of Saving tiny Hearts Society, who has become a hero and a friend. And, when Charlotte was four, an adult truncus arteriosus survivor found us–Jessica Renshaw has given us a picture of best case scenario outcome, complete with college graduation, marriage, and a lovely future  When she and Charlotte met in the summer of 2009, they compared scars and teddy bears and Charlotte learned, palpably, that while she is unique, she is not alone.

Then Charlotte started reading the blog and I realized that I have inadvertently given her a gift–a baby book that goes beyond babyhood. I’ve captured key moments in her life and my thoughts about them. One day I’ll print and bind it for her, perhaps when she embarks on the journey that takes her to her own home.

Certainly, I did not set out to blog for other parents of medically complex children, but I was grateful that they found us and in finding us found solace. You see, in 2005, there were very few blogs (can you imagine?!) and very few ways to meet parents of CHD kids  We tried the American Heart Association, we asked the hospital, we looked for parent groups. We found only worst case scenarios and nothing to give us hope.

It’s hard to imagine, really, how much has changed in 8 years, not just in my motivation for blogging, but in how and why my audience has changed. WordPress founder Matt Mullenweg talks about how blogging has gotten harder–there are so many voices in the ether that audiences are harder to come by. He discussed “the intrinsic value of blogging,” describing how he blogs essentially for two people–himself (present and future) and one other person, as if he was writing a letter.

I love Mulleneeg’s ideas. But, I have to say that I blog for a few more people–for the parents who might stumble upon Charlotte’s journey and realize they are not alone; for my friends and family who want occasional information; for myself; and, now, most of all, for the little girl whose broken heart created the reason for my words. She is my joy, my heartache, my inspiration, and my heart.

Now, I shall hit “Publish” and this will go into the ether–to be Tweeted, Facebooked, Tumblred, and ProShared. Lots of people will hit “like” on Facebook, but how many will get to this word?  I wonder!

Congental Heart Defects Kill Lots of Kids, but You Can Help

Did that get your attention?

According to the Children’s Heart Foundation, congenital heart defects (CHDs) are the leading birth defect around the world. In the United States, CHDs cause more infant mortality than any other illness or defect. One in 40,000 children born in this country–this medically advanced, wealthy country–is born with a CHD.

When I check on my sleeping 8-year-old girl each night, I breathe a sigh of relief. Why? Because thousands of American babies born with CHDs don’t make it to their first birthday, let alone to their eighth.

Each time we go to the cardiologist, I hold my breath. Why? Because thousands of children like Charlotte don’t make it to adulthood. Or if they do, they suffer developmental disorders and other complications, some of which are avoidable.

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October 2012

We are the lucky ones. Charlotte was diagnosed in utero. As a result, she was transferred within 13 hours to then-named Children’s Memorial Hospital where, a week later, she underwent life-saving open heart surgery. She spent 49 days in the PICU. I have some traumatic memory blockage, but there were bumps in the road and times when we weren’t sure she’d come home to us. Again, we are the lucky ones. Because her heart suffered minimal muscle damage and because she had the least complicated possible version of Truncus Arteriosus, she has had best-case outcomes. She is healthy and happy.

 My cousin Lynn is a lucky one, too. A little more than 50 years ago, she was born with tetralogy of Fallot. If I have my facts straight, she was not diagnosed until she was nearly a year old. Her parents took her to Texas Children’s Hospital where she was the 11th child to undergo total repair. She is the mother of two college-age girls and a hero of mine for other reasons.

I could name a half a dozen other lucky ones. But, today I want to talk about what it takes for ALL CHD children to become lucky ones.

In utero detection isn’t always possible (depends on the kind of sonogram, technician skill, etc). And in utero detection is costly.

But, there is an inexpensive test that can detect  a heart problem on a newborn before they even leave the delivery room. It costs around $15, is non-invasive, and causes no pain or trauma. A simple pulse oximeter test–a bandaid-type wrap around a finger that can measure the saturation of oxygen in the bloodstream. Low blood oxygen indicates problems and leads to diagnosis.

Every child in every state has a hearing screening before he or she goes home from the hospital. Why not a pulse oximeter test?  There are 8 states where no legislation has mandated this test and two states where such legislation has failed. I’m happy to report that Illinois passed this legislation in September 2013. Thank goodness we knew about Charlotte’s heart–she would not have been routinely screened in 2005.

I urge you to read more, educate yourself, and advocate for the health of all the children in your state.

Think this isn’t your problem? Think about these facts, from the Children’s Heart Foundation:

Lifelong Disease

  • Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

  • 91,000 life years are lost each year in this country due to congenital heart defects.

  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

 

While new studies show that the number of infant and child deaths caused by congenital heart defects is falling, these deaths still account for 30-50% of  all infant mortality caused by birth defects. It is the leading cause of infant and childhood death. And those deaths can, many of them, be prevented.

Truncus and repair from ufhealth.org

Charlotte’s heart looked like the one on the right when she was born. Now it looks closer to the one on the left. Shouldn’t every child have that chance?

“Will I Have Another Scar?” or Fact vs. Truth

Charlotte will have her cardiac catheterization tomorrow morning at 9:30 CST.  The last time she had a cardiac cath, in 2009, it led to her second heart surgery.  This is probably the one fact of the last catheterization that I have withheld from her.  We’ve told her that the worst-scenario outcome is another surgery, but we haven’t told her that that’s what happened last time. To say that I’m nervous would probably be to understate the obvious.  Beyond the anxiety that any parent feels when their child undergoes anesthesia, for no matter how short or routine a procedure, add the anxiety about her heart and another surgery.

She has a lost of questions for Dr. Gossett that I hope he’ll have time (and patience!) to answer before the procedure.  Among those is, “Will I have another scar?”  She really doesn’t want any more scars, though she’s quick to say that she’s proud of the scars she has.

This question led me to search for an essay I started several years back and, I’m embarrassed to say, never finished.  I’ll share here the “work in (halted) progress”:

Charlotte’s Scar

Every summer morning, I insist that Charlotte puts on her suntan lotion before she gets dressed.  She likes to help, so I give her the Waterbabies Sunblock Stick. Looking in the mirror, she carefully covers her face with sunscreen and then begins to paint a line down her chest, tracing her scar.  “Especially the scar,” she says, repeating my mantra from the summer she was two, the summer after her second open-heart surgery. Now that she is four, she knows she has a scar and she takes care of it herself.

Like most children her age, Charlotte loves to look at her baby photos and hear about her first few months on earth.  To her, the pictures of an 8-day old with a breathing tube, multiple IV lines, chest drainage tubes, and a bandage on her chest are totally normal. She’s not frightened by them. She can explain that she had splint on her wrists to prevent her baby movements from pulling out the IVs. She will recount that as the pictures progress, showing fewer tubes and wires and monitors, it means that the baby was getting better. Mostly she looks for the moment when Bubba, her beloved bear, appears at the foot of the hospital crib.  To her, this is a normal babyhood. I think she’d be surprised to know that it was very different from that most of her friends experienced. In fact, I recently asked her to tell an acquaintance why she had the scar on her chest and she said, “I don’t remember.”

It is remarkable to me that she has no idea how remarkable she is, how exceptional her existence is.  As a survivor of the congenital heart defect Truncus Arteriosus Type I, Charlotte benefited from a heart repair that is scarcely forty-five years old.  Her defect was diagnosed when I was only twenty-two weeks pregnant.

Today, Charlotte knows how remarkable she is, but I’m still not sure she truly understands it. She is at once proud of her scar and self-conscious about it: She’ll wear shirts that show it, but doesn’t want anyone to ask questions about it.  She likes being different, I suppose, but doesn’t want to have to explain why she’s different. I’m not sure what she really says about her heart and health at school. She says she tells her friend Taylor all about it, but no one else. We talk often about how to answer or deflect questions as simply as possible, with the minimal relay of information (unless she wants to give more). For instance, when her deskmate asked why she was late the day of the lung perfusion, the answer was, “I had a doctor’s appointment.”  She wants to tell the truth; I explain that “the truth” doesn’t have to include every detail. There was, in fact, a doctor in the room last Monday, so her answer was true. Of course, I wonder if I’m teaching her ways to tell me the “truth” without giving me the facts, something which could be handy for her as a teenager.

When the nurse called with the procedure time and instructions for tomorrow’s procedures, Charlotte was in the car and heard the conversation. She was quite unhappy at the prospect of “no food or drink after 6:30 a.m.” and began to throw a tantrum.  I staved it off, pointing out that none of us were happy about the procedure, but that it is simply a fact of who she is. “We all have to get through the day,” I told her, promising that her dad and I wouldn’t eat either and that we could leave through the front door and not the kitchen.

One day I’ll finish the essay I started about her scar. And maybe I’ll write that picture book that will help other children explain and understand their own scares.  The problem, as I see it, is that there is no complete truth about her scar that satisfies. That scar (and all the others) are part of who she is, they are the bare facts of her being and her continued existence. Simply put, without them, she wouldn’t be here.

The facts are the facts, but the truth lies in her feelings about her scar and the facts it represents.