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.


Charlotte Speaks Up — A Heart Update

We’ve always told Charlotte that she will eventually be able to read her body and tell us when it has time to go to the doctor. We just never thought it would happen before she hit adolescence. But, Charlotte has been a self-aware and observant child from the beginning, so I guess we should have been prepared.

C on stage GCFAS

A week or so ago, Charlotte told me that she had had chest pains after running hard during a game of tag. I asked if it felt like her usual chest pains* (typically caused by reflux). She said no. She mentioned it again the next day and I asked if she was concerned. She said, “Not concerned. Worried.”In the past month, she  has reported being tired after thirty minutes of horseback riding (at her level it is seriously not that strenuous a sport) and slept for 13 hours the first night of her October vacation.  I have no doubt something is going on. So, I shot an email to her cardiologist and we’ll be going in for her check up next week–5 months earlier than anticipated. Needless to say, Philippe and I are now worried, too.

Charlotte’s last intervention was a cardiac catheterization and balloon procedure in October 2012. Drs. Gossett and Young  both told us that while the procedure was incredibly successful, it might buy us a few years (or 2 to 3 years, depending on who remembers the conversation) until we’d need to talk about surgery, or some other intervention. We’re just past 2 years on that intervention.

To put this in perspective–which I am desperately trying to do–Charlotte’s last repair was in March 2007. She was 20 months old. She bounced back after surgery beautifully and grew 4 inches almost overnight. It was evident how necessary the surgery was when we saw her renewed energy and sudden growth, not to mention her quick weaning from the g-tube.  The anesthesiologist at the time told us he’d never seen a conduit that large put in a small child and that he was sure the repair could last for a long, long time. Even close to 10 years. Well, we’re close to 8 years on that repair.

We don’t know what we’re in for, other than the roller coaster ride of remembering that our jewel is a heart patient and always will be. It’s not all she is, not by a long shot. But her heart, both literally and metaphorically, defines our family in so many ways. Sometimes, like this week, it defines our focus. Sometimes, like in the photo of Charlotte on stage at the Gold Coast Fashion Award Show in September, it defines our philanthropic bent.  That’s the literal heart, of course. As I work to keep things in perspective, I’m reminded that her metaphorical heart truly defines us by reminding us that there is wonder in the world, compassion in great droves when you least expect it, and laughter to help heal all things.

Please keep Charlotte in your thoughts this week.

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

Cropped Heart

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.

Cropped Heart

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?

Meeting Dr. King: A Best Case Outcome

On Monday, Philippe, Charlotte, and I went to meet Dr. King. Not the one we’ve been celebrating all week, of course. Not even his cousin, I don’t think. Dr. King the orthopedist.

Because it floored me, I have to start with the least important information: Charlotte clocked in at 4’7″. I think this is at least an inch taller than her annual check up last month.

On the scoliosis front: Charlotte was examined by Dr. JP Manolo, a resident. He was thorough, kind, and smart.  He took notes, told us what he found and what he was looking for. He explained the different kinds of scoliosis (infant, youth, adult). His conversational tone put us at ease and he observed Charlotte as he spoke. While he was clearly going to examine her, I think he had decided on first glance that he wasn’t looking at anything frightening. So he set about setting us at ease.

Then he examined Charlotte. First, he had her touch her toes. Charlotte has had tight hamstrings forever, so this part of the exam is hard for her–simply touching her toes without bending her knees is a challenge. He measured the curvature in her spine with a device that looked like a level with a half moon cut out of it. And he found a 7% curvature.  Then he sent Charlotte for an x-ray.

Don't you love that they have thought to protect all of her reproductive parts?!

Dr. King came in with Dr. Manolo to explain the findings: Charlotte has a 15% curvature in her spine. This is, he said, “just a number.” 0-10% is “not diagnostic.” 10-30% is considered mild, 30-45% is moderate and >45% is serious, requiring surgery. He noted that +45% is rarely seen in children who don’t have serious underlying  medical issues. Charlotte’s curvature may be related to the truncus arterious and thus be “embryological” or it could be related to the cracking open of her ribs for repair. till related to the TA, but more a result of a surgical interruption in regular growth.

15% requires observation. We’ll go back in about 6 months. At that point, the 15% becomes a baseline and Dr. King will determine if the curvature is progressing or holding steady. He noted that more than 30% would require a brace, but that the doctors understand the repercussions of bracing an adolescent (Deenie, anyone?) and they try to avoid it.

At this point, there is nothing to do. No exercises can prevent or stem the curvature. I think our relief was palpable. I’m quite surprised we didn’t giggle.  All in all, it was another wonderful Lurie Children’s Hospital experience, and not just because we got the answer we prayed for.

Heart-a-versary

Charlotte sometime before her surgery. (May, 2005)

Last Monday we celebrated Charlotte’s sixth birthday. Of course, she “celebrated” with her second bout of strep throat in 3 weeks (who knew I was supposed to change her toothbrush?! We’re still P.I.T.s*). Just as I finished icing the cake for school, I got a call to pick her up because of a high fever. Not to worry, she had cake that night at home, cupcakes at school on Thursday, and yesterday she had a magnificent puppet party.

Today, we pause to celebrate–a bit more somberly perhaps, but with equal amounts of joy–Charlotte’s heart-a-versary.

Six years ago today, we handed our teeny-tiny baby to the anesthesiologist. I remember him as being quite tall and having an Australian accent, but I was post-surgery myself so am an unreliable witness. He cradled her in his arms and we all walked to the operating suite. There we gave our baby, our hopes, and our trust to the great good team of Drs. Mavroudis, Backer, and Stewart. On the way to the waiting room, Philippe collapsed in my arms.

We waited. And waited. And then Dr. Mavroudis came to us smiling, telling us that Charlotte was back in her room and the nurses were setting up her meds. I think that was the first time we breathed that day.
Charlotte immediately post-surgery (May 16, 2005). So little amidst all those tubes, medicines, and equipment.

So today, as every May 16, we think of those wonderful doctors, as well as Charlotte’s formidable cardiologist Luciana Young; her lead nurses Nancy Smith and Samantha McCoy; and all the staff and nursers who gave our daughter back to us.

She may have been born on May 9, but it was on May 16 that Charlotte was given a fighting chance at life. We will be forever deeply grateful to all of you who helped make that happened and who supported us through the long days and nights that followed.

Charlotte last Monday. Feeling terrible with strep and exhausted after a 2-hour doctor appointment, but ready for her birthday cake.

A Perfectly Innocent Question, or more ruminations of Charlotte as a "regular kid"

Our annual Virginia Beach sandcrab picture. The scar pokes up about an inch or more above the suit.

Charlotte has a couple of bathing suits and sundresses that expose her heart surgery scar. She even has one tankini that shows off her heart scar as well as her g-tube stoma. Every now and then when she chooses one of these outfits (and these are her favorite bathing suits), I’ll ask if she minds that the scar or scars show. Her standard response is, “Not at all.” Just recently she has begun saying, “No, of course not. I love my scars.”

Charlotte knows how she got her scars. She pours over her baby photo albums. She has asked me to explain her heart defect and how it was repaired (the book It’s My Heart is an indispensable resource.) And, she was recently among the honored child-guests at the Saving Tiny Hearts Society gala. We’ve rehearsed what she might say if someone asked how she got the scar.

We both really thought that she was as comfortable as a five-year old might be with her body and its difference.

Until Saturday.

This weekend a lovely, charming, intelligent, and curious eight-year old friend asked Charlotte what her scar was. I didn’t hear the exchange or how she phrased it, but I imagine it was innocent and nonjudgmental. Suddenly, Charlotte came running into the house, angry, telling me that she didn’t want anyone to talk about it. She was stomping her feet, very insistent that she would not talk about it.

Philippe and I were stunned. I’ve asked a few times this summer if any of her camp friends asked about it and she said no. Turns out one friend asked and she refused to answer.

Later in the day, when Charlotte had calmed down and we were alone, I asked her why the question had upset her. It took her a few moments to articulate it, but she said, “Because I didn’t want R to think I was still sick.” And, I’m guessing, she didn’t feel she could adequately explain that she isn’t sick, that she is (as she so often says) “as healthy as she can be.”

Philippe and I were both dumbstruck. I still don’t know what to say.

Both R and Charlotte have probably forgotten about this conversation. I whispered to R that her dad could show her Charlotte’s website and she could read the answers to her questions. She’s an intelligent girl and meant well. She deserves an answer. Who knows? Charlotte’s story might inspire some of her life choices.

While the kids have likely moved on, my heart breaks for Charlotte’s broken heart and for her bruised spirit. This time the question was caring and considerate. Next time it might be cruel, teasing, or exclusionary. And, I have idea how to help her deal with this. She wants so much to be a regular kid. And in so many ways she is about as regular (and extraordinary) as a kid can get. But, no matter how regular she is, she’ll always have a “zipper” down her chest and she’ll always be a heart patient. Even if congenital heart defects are the number one birth defect, there ain’t nothing regular about that.

Thinking of Truncus Arteriosus and Other Heart Babies Today

Our journey began, as you know, in January 2005 when we learned that our unborn baby, then named “Sprout,” had a rare heart condition called Truncus Arteriosus. We tried finding information and support on the internet and simply came up empty-handed. Even the national organization Mended Little Hearts didn’t yet have a Chicago chapter.

So, I started the blog. I wanted to share our experience, which I had chronicled for months in emails, with any parent who might benefit from it. I wanted to write a memoir, Charlotte’s memoir. And, yes, I hoped that maybe a publisher might find me.

As Charlotte’s heart healed beautifully and without complication, her journey quickly became one through the discomfort of reflux and feeding issues, with a minor detour to plagiocephaly (remember the helmet photos?!).

And now, if you read the comments, you’ll find that parents of Truncus Arteriosus babies have found us. And one Truncus Arteriosus “baby” herself. I’d like to introduce you to them.

Jessica is 21-years old and lives in Michigan. Today, as I write this, she is having her third TA repair. I’m in awe of her, actually. We have been told that by 21, Charlotte may have had 4 surgeries. Jessica’s valve and conduit have lasted for 18 years! As she waited for her pre-surgery exam results, Jessica wrote me a beautiful email about the things she was scared about, things Charlotte should know before her next surgery when she’ll be old enough to understand. And the things she’s looking forward to. Jessica’s poise as she awaited surgery moved me–she was thinking about being nude and exposed, with all her private bubbles out as she said. She’s done a lot of research, so she was also thinking about all the tubes and wires that will greet her when the anesthesia wears off tonight.

As we light our Shabbat candles tonight, we’ll be thinking of Jessica and wishing her quick and peaceful healing. When she’s well enough, Charlotte is going to visit her in person so they can compare scars.

Caden’s Mommy Ashlea found my blog today. I’ve just spent Charlotte’s naptime reading Caden’s story and marveling at Ashlea’s profound prose. Caden’s 18 months have been one miracle after another. You can read his story on his blog. I recommend you start with Ashlea’s essay, Caden Konecny: Caden’s Feet. I wish I’d written it.

And finally, but not least, is Josh P., Francie’s son. Josh is not a TA baby; he has complex congenital heart disease and recently had a Fontan procedure. We’re hoping that he is healing well and that his parents and little brother are doing well, too.

Ashlea has created a list of links to other TA babies. Please visit them.

And keep Josh and Jessica in your prayers.