Flashback #6: Have You Heard Charlotte Tell Her Own Story? (#CHDAware, #TBT)

Charlotte reminded us last night that it is exactly 6 years since her third surgery. So, in honor of her strength and without further ado, my post from February 24, 2015:

“Charlotte’s Story: The Road to a Healthy Heart”

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month (February 2015) if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation. We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart. Or, read it below:

*Bonus for reading to the end—there’s a video and you can hear more about our Lurie Children’s experience.

February 23, 2015

Charlotte, age 9, underwent her third open-heart surgery at Lurie Children’s just days ago. She shares her story below in honor of American Heart Month.

Hi. My name is Charlotte, and I’ve been a patient at Lurie Children’s since I was 12 hours old. In January 2005, I was diagnosed when my mom was pregnant with me with a congenital heart defect called truncus arteriosus. I was supposed to be born in June, but I arrived a little bit early, on May 9. I’ve been going to Lurie Children’s for follow-ups my whole life. Continue reading

What You Need to Know about Congenital Heart Defects (#CHDAware)

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. and are responsible for more deaths in the first year of life than any other birth defect.

Truncus arteriosus is rare among these—according to CDC statistics, 0.72 live births in 10,000 have TA. That’s around 250 children each year. Consider that Prentice Women’s Hospital, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of few children are born with this defect.

On the left, a normal heart. On the right, a TA heart. note that there is no definition between pulmonary and aortic trunks (what is purple on the right is blue or red on the left, indicating oxygenated/de-oxygenated blood mixing.)

A 2014 NIH study demonstrated that trunks arteriosus is one of the most expensive hospitalizations of any defect. Depending on length of hospital stay and complexity of post-operative complications, a TA repair can cost as much as $425,000 (high end is a greater than seven day stay). Average hospital stay is around 21 days. Charlotte’s first hospital stay was 49 days; she was above average even then! Charlotte’s most angioplasty (2012) that required only one overnight stay, came in at more than $66,000, so I’m guessing that her neonate was much higher than average.

90 percent of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child’s individual constitution.

Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, “The ultrasound shows…” After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.

Parents seek out other parents, and in 2005 that was hard to do.  While I try to avoid medical advice and information on the internet, I relied on it for reflux support for years and I am proud that this blog has given it to other parents facing Truncus Arteriosus and other CHDs.

I rarely blog any more since Charlotte’s Journey Home was meant to share her ups and downs with the “Charlotte Watchers.” We are the lucky ones; Charlotte’s heart is the thing. Her feeding disorder is far enough in the rearview mirror that she no longer remembers it. She has minimal neurodevelopmental complications. In fact, the neurocardiologist who once marveled that she was bilingual at 9 years old would probably faint to hear that she speaks three languages now, and I mean really speaks them, and maintains a straight A average in honors classes at her high school (humble mom brag).

This week, I blog for awareness and celebration. I celebrate other CHD Parents like France Paul and Tommy Riles who have taken inspiration from their children’s medical difficulties to raise awareness and money for children born with congenital heart defects. I celebrate my cousin Lynne whose CHD is the last thing that defines her–she’s defined by the life-changing school for autistic kids that she and her family founded in Richmond, Virginia (Yeah, she’s my major hero.) I celebrate Ann and Robert H. Lurie Children’s Hospital of Chicago makes a difference every day for parents and kids facing CHD, both the facility and the US News & World Report-rated Cardiology team. And I celebrate Charlotte who reminded me that she is 15 3/4 today. She truly is a rare bird.

mended heart

#CHD Aware Parenting

A few years ago, I wrote about the Ripple Effects of Living with Congenital Heart Defect. It is a glimpse behind the curtain at the multiple medical tangentials that came along with CHD and have made Charlotte’s journey so much different than that of most of my friends’ kids. Sure, your kid might have scoliosis and braces, but they probably didn’t also have a g-tube and plagiocephaly and a paralyzing fear of needles. I’m not whining about having it worse than you. Just stating the facts: We’ve had it different and the baseline of that difference is CHD.

Yes. Grown and almost grown women play in the snow. Meet Blobby Barnes, named after one of C’s favorite MCU characters because they both only have one arm.

Like almost everything I’ve written, that post was about Charlotte, as witnessed by me and Philippe. It was for the “Charlotte Watchers,” as I’ve long thought of our friends and family (in a direct homage to my late dear friend Jen Perlman).

What I’ve never written about, even in my journal, is how the witnesses felt. I can’t say that Philippe and I ever talked about what we felt for ourselves, at least not as the moments unfolded. Our singular focus was to maximize Charlotte’s success—at all levels. And, I don’t remember anyone asking us, at least not after Charlotte came home from the hospital in June 2005.

Looking back, I can honestly say that I spent the first five years of Charlotte’s life sandwiched between joy and grief. Joy that she was alive and finding a way to thrive and grief for all we would never have—siblings for her, a babyhood full of the regular stresses of messy eating and muddy crawling. The condiments on the sandwich were loneliness, fatigue, and anger (the last was really perimenopause, but that’s a story for another blog. In other words, We’ve discovered since then that Charlotte’s her medical anxieties were induced by childhood medical trauma. Turns out I have suffered my own version of medically induced PTSD. For what it’s worth, I’m not self-diagnosing; three different psychologists have concurred and my PCP agrees.

This, then, is one of the other ripple effects of living with congenital heart defect—the isolation of the parent, sometimes even from each other, and the scars that linger long after the danger is gone. It’s harder to write about because it’s more personal, deeper, and more painful. It takes more introspection and requires a leap of faith in my readers. It defies the “live in the moment” axioms of our culture and the “get over it, stop thinking of the past” of my closest circles.

Plus, there are the double fears that no one cares (the cute baby is the focus, right?) or that the “Charlotte Watchers” will be offended that I felt loneliness. “I was only a phone call away,” I can imagine hearing. “Yes,” you were, “with your toddler and your six-month-old, your fulltime job, and I just couldn’t look at all that happiness. Or maybe I didn’t want you to see the messiness of our lives.” All those people who turned up for my father-in-law’s shiva in 2006, having never met the man, probably would have offered any support we needed for the baby they cooed over. But shiva provides a ritualized opportunity to show up; a sick baby just doesn’t.

If the Great Pause has taught us anything, I think, it is to ask for help. Maybe even to look differently at our friends and neighbors and offer help before we’re asked. While mothers have long suffered isolation and overwhelm, to varying degrees, The New York Times just recognized that for the first time with a special section yesterday called, “The Primal Scream.”

I hope that parents thrust into heart battle will know they are not alone, that they have a community of other heart parents. And that more importantly, they have a community of the people who loved them before that ugly ultrasound.

It took me years to realize that this blog has been a witness’s blog. Every time someone (okay, mostly my mom) has said, “You should turn your blog into a book,” I’ve struggled with how to do that. What’s the angle? Most of the blog is about the feeding issues, not the CHD, but that’s not the defining element of our lives. What’s the “so what”? There is no tragedy here (folks, tragedy and recovery sells), and I have no complaints about that. Even after a book proposal workshop with one of my favorite memoirists, Esmé Weijun Wang, I’m still stumped.

During this #CHDAwareness week, I wonder if it’s about the weight on the witness. And if I’ll ever have the courage to tell that story.

Corashopesanddreams.org graphic: Every 15 m

Want to know more about how CHD affects American children? Visit the American Heart Associationhttps://www.heart.org/en/health-topics/congenital-heart-defects.

Attack of the Annual Cardiology Checkup (#CHDAware)

It sneaks up on us a little more stealthily each year. Days and months pass and the fact of heart warfare lies beneath the surface of our lives, dormant, docile, and unthreatening. Ever since Charlotte’s third surgery, we’ve lived with Dr. Backer’s words, “You’ll likely never need another open-heart surgery,” as though they were a magically already fulfilled prophecy and a protective shield rolled into one.

Basically, every 365 days or so, we schedule Charlotte’s cardiology check up, Charlotte has an echocardiogram and an ECG, Dr. Hauck gives us a thumbs up, we get lentil soup at Sultan’s Market or cookies and tea at Colectivo, and we go home.

Covid-19 delayed our annual outing this year and there were no treats afterwords. 365 days stretched toward 500 days. It wasn’t until Charlotte had a minor abnormal fluttery feeling in her heart that either of us remembered to schedule her check up.

Aside from the date, November 3, it started as a normal appointment. Tensions were a bit high because of election uncertainty, but not because of the doctor. The echocardiogram took longer than we remembered it taking, but sometimes it has been hard to capture certain views of Charlotte’s right pulmonary artery. When the technician left the room to get the cardiologist who specializes in echo reading, I began to worry.

Charlotte nearly panicked. This was not our routine and didn’t fit the plan. I tried to play it down, “She just needs help to get a better view. She just wants to make sure she has everything Dr. Hauck needs.” All the while, I was gagging on the memories of that day in January 2005 when a sonographer left the room to get a colleague,”Just to help me get a better view.” We knew in that moment that something was terribly wrong.The blank space between her departure and the doctor’s explanation were an excruciating eternity of imagining the worst without coming close to what he might say.

Sitting across the room from my daughter, who was already stressed out because it was Election Day, I concentrated on my game of Threes to distract myself. She wasn’t having any of my comfort, so I stopped trying The bass drum of my heart beat in my ears. My brain started its internal doom scrolling. I’ve gotten pretty good at choking back my tears to focus on her welfare, so I thought I had it covered.

Spoiler alert: Charlotte is fine. Sort of. She’s as fine as a young adult living with Truncus Arteriousus Type 1 can be. But the blinders have been ripped off, the protective shield is punctured, and we won’t skip blithely through the next 365 days.

The velocity in Charlotte’s right pulmonary artery is trending ever-so-slightly in the wrong direction, indicating that the blood flow is blocked somehow. The echocardiogram was, not surprisingly, inconclusive. Charlotte’s heart, it seems, is too close to her chest cavity for the wand to pick up the sound and draw its magic picture. This proximity also gives me one of my favorite gifts–her loud, strong heartbeat that I can often hear in a very quiet room if we are sitting close enough. But it can make diagnoses difficult.

In a perfect world, we’d go next for an MRI with contrast so the doctors can get a better look. I’m sure you know by now that life with a CHD is not and never will be a perfect world. Among other things it has created sever medical anxiety so anything with needles is off the table right now.

We’ll be heading back in June for another echocardiogram and hopefully a better picture. If the numbers stay flat, we stay the course and go back every six months. If they continue to creep downhill, we’ll look towards more diagnostic imaging.

In case you’re not adept at reading between the lines, this is the beginning of Charlotte’s next journey toward an intervention of some kind. If Dr. Backer’s magic force field is intact, we’ll be talking about some kind of catheter procedure. That is the only possibility we can manage or think about right now.

Truncus arteriosus is docile and dormant no more. Welcome to #CHDAware week, or just another day in our lives.

To learn more about congenital heart defects and how you can support research visit:

Who Will Hold My Heart? A Heartiversary Tale

I was more likely to play school than to play house. Had I imagined motherhood, it would not have begun with cardiac surgery. Or with wires, tubes, a ventilator, medicines, oxygen, daily x-rays, and ultrasounds. I would not have been on first-name basis with my daughter’s cardiologist and her first babysitter would not have been our favorite PICU nurse. My imagined life with a newborn would not have included pumping breast milk eight times a day while a machine fed my baby. Or sneaking into her room to give her medicine and food via a tube while she slept through the night. Or fighting with a one-year-old get her to drink half an ounce of milk. Most of all, however, I think I could never have imagined that it would take nearly a year for me to fall in love my child. Or, that once I did that love would be the fiercest and most complex emotion I’ve ever felt.

Continue reading

Fifteen? How’d That Happen?

We often joke about your first birthday, Charlotte. How we got a babysitter, posed you with a cupcake, and then went out for dinner. We needed to celebrate surviving your first year.

In that photo, you sit in your Stokke chair, looking somewhat skeptically at the cupcake and candle in front of you, surrounded by the two people who love you best in the world. We are grinning like the silly people we were. A lovely tableau of our little family, celebrating you.

***

If you look closely the picture tells a different story. It’s our baby’s first birthday and there is no party. We decided there would be nothing like the parties our friends and family had planned for first birthdays. It wasn’t that we didn’t love Charlotte. We were just so very tired. And, I knew I’d be devastated when the other babies dove into their cupcakes face-first while she ignored hers. Or when we had to stop the festivities to clean up an epic vomit or give her medication. Or when an aunt glanced over with the look of pity and helplessness that she couldn’t hide, or a teenage cousin tried to get her to eat. No way I was inviting an audience to one of our daily heartbreak sessions.

Look again at the photo: Charlotte’s dinner, on the table next to her, looks partially eaten. There are two glasses, one Pediasure and one water as Charlotte had recently begun sipping from an open cup. Plastic keys and a teething ring to jingle in order to tease and coax her.

Our isolation and my loneliness just about leak out of my eyes as Philippe and I hold hands around her, forming the protective circle we’d kept her in for a year. We thought we were so strong. We were, in fact, like the most glorious winter tree after an ice storm, sparkling yet fragile, with no telling whether the branches would break off in the wind or emerge stronger and more beautiful come spring.

It was years before I actually saw the story this photo tells. I could never understand why friends and acquaintances asked after Charlotte’s health in the quiet tones one uses near the very ill. The picture forced me to see that I’d failed my daughter, that well-meaning friends and family saw what I couldn’t—her spindly Sharpei legs, like toothpicks covered in loose skin. Healthy babies don’t have skinny legs. Or heads that look too big on their bodies. Or eyes that look tired and sunken. Holding this picture, I knew I’d gotten it all wrong—my parenting, Charlotte’s birthday, all of it. It was CHARLOTTE, not us who had survived an incredibly long, exhausting, and difficult year. Charlotte who would, I later learned, suffer post-traumatic stress disorder from this year. Not me. This photo still makes me cry.

***

On your second birthday, I dared to believe you might try a cupcake. We went to a bakery with Sheri, your favorite grownup friend, and ordered three, all different flavors. You watched while Sheri and I each ate half a cupcake. Sheri made happy small talk to distract me as you ignored your treat. I tossed the evidence in the trash. In the photo from that birthday, you’re leaning against Sheri, laughing as she holds your hands out to embrace the world. If your legs were still skinny, I can’t tell—your pink and yellow plaid dress comes down just past your knees and the photo crops at mid-calf. Other pictures show your glee at opening the pile of presents that arrived from around the country to celebrate you.

There are no pictures, however, of the cupcakes.

That same day, you picked up the Gerber sippy cup, pointed at the brand name and said, “B.” You had begun to teach yourself the alphabet. Your feeding therapist gifted you with a Leapfrog Word Whammer and you were off and reading three-letter words. So what if you didn’t care about cake? You were going to be a reader, like me.

***

For your third birthday, you asked for a chocolate and “pink” birthday cake. After the “birthday cake miracle” two months earlier, when you’d asked for a second piece of cake at Sarah’s party, I’d determined to make it from scratch. One of the layers broke as I lifted it from the pan, so I “glued” it with some icing. My decorations were less than expert. To be frank, the cake was kind of ugly. You watched me salvage the wreck. After I muttered for five straight minutes about how ugly it was, you said, “Mommy, forgive yourself.” You brought me to tears with your kindness and empathy.

We gathered a gaggle of neighborhood toddlers to celebrate. Someone snapped a picture of us as I held you toward the cake and you proudly scrunched your face to blow out the candle. Then you dug in.

I look at the photos from these days and see the person you would become: open, cheerful, kind, bright and empathetic. You thrived despite our early foibles and failures. You soldiered on to fight every medical calamity that came your way. If you had been fighting actually battles, you’d be a decorated veteran.

***

Today, on your fifteenth birthday, the cake was, quite frankly, ugly again. But you, you were magnificent. In the middle of a quarantine, you pivoted gracefully from months of planning your special day to create special moments with your friends—both virtual gaming and a socially distanced mocktail party. You were gleeful and grateful.

I am relieved that when I look at the photos from today, there is only one story, that of a young woman who came into the world with the chips stacked against her and said, “That’s not my story. My story is one of triumph.” You make my heart sing every day, helping the memories of what felt like failure 15 years ago fade into just another story that we tell.

Happy birthday, my sweet girl. May you grow from strength to strength.

Leapin’ Lizards, Where Does the Time Go?

We’re all glad 2017 is over, for many of the same reasons as the rest of you. It went out with a fizzle as we came home to frozen pipes last night and still have no water. But, for the most part, the year had more ups than downs: I, quite unexpectedly, landed an amazing job; Philippe is also in a new, exciting role at a new company; Charlotte passed all her heart milestones (checkups and stress test) with flying colors. Our favorite new Chicago philanthropy–Cradles to Crayons Chicago–finished its first year in Chicago, and helped more than 50,000 disadvantaged kids. We’re proud to have been a part of that as members of the Family Advisory Committee and the Teen Leadership Corps. (Look for C’s happy face in the front row).  

C2C drop off_062017

Charlotte with a carload of toys for Cradles to Crayons, collected as a service project for the Teen Leadership Corps.

Charlotte’s Journey Home is on semi-permanent hiatus since Charlotte has asked for privacy about medical issues moving forward. If a heart thing comes up, we’ll post with her condition and, thank goodness, we haven’t had to do that in years. She continues to be a best case Truncus Arteriousus patient. And she is now developing into a mensch who chooses to support Cradles to Crayons Chicago not just for her bat mitzvah service project, but because she loves the cause, the people who work there and the way it makes her feel (umm…very tired, but happy). 
Out of respect for Charlotte’s request for privacy–though she is adamant that I leave the site up so it can help others (I did mention she’s a mensch, right?), I won’t end with a list of her accomplishments and goals. I will, however, reprise an old standard, Charlotte by the numbers:
Height: 5’6″
Weight: Nunya business
Number of times she cracks us up daily: I’ve lost count
Grade: 7th
Countdown to her bat mitzvah: 4 1/2 months
How many miles she ran this year: Dozens–she’s on the cross country and track teams, a third generation Goldman runner
Next time you can run with her: May 20, for the Lurie Children’s Move for the Kids 5K (you knew I’d get a hospital plug in, right?)
How many times she makes us proud: I’ve lost count
How often she annoys us: Ditto (She is a tween. And we annoy her, too)
Want a more interesting New Year’s Day post? Read this one, from her very first new year’s celebration. Now, that was a year to write about!
Until next time, friends, thanks for reading, for supporting our heart warrior, and HAPPY NEW YEAR!
 

On This Day….

How often can you say that you know exactly what you were doing on this day twelve years ago?  I can say that every May 16 I know exactly where I was and what I was doing on May 16, 2005.  You see, today is Charlotte’s heartaversary, the anniversary of her first open-heart surgery.

I remember handing the tiniest bundle, all of 5 lbs., to the tallest anesthesiologist you can imagine and hearing him say, “We’ll take good care of her.” I remember thinking how kind it was of him to carry baby Charlotte in his arms, rather than wheeling her away from us. Somehow it affirmed for me that the doctors would see our baby as a person, not just a heart to fix. I remember turning from him and thinking that the hallway leading out of the surgical suite and to the waiting room was the longest, whitest hall I’d ever seen. And, I remember that before I could complete that thought Philippe let out a sob and his knees buckled. I remember catching my husband so he didn’t crumble to the floor. I remember.

I remember Sharon, the attendant in the waiting room, and her concern for us. And guess what, Sharon remembers us. I’m sure that when I walk into Lurie Children’s tomorrow, where she now mans the security desk, she’ll ask how Charlotte is. I remember Julie, the APN, coming to update us. And I remember Dr. Gus Mavroudis walking toward us, pulling off his surgical cap, smiling and telling us that Baby Charlotte was on her way to recovery. I remember.

I remember walking into Charlotte’s PICU room and being overwhelmed by the site of our tiny baby, barely visible on the warming tray, surrounded by machines and covered in bandages and wires, swollen like a balloon from the fluids, eyes closed.I remember Nancy Smith, Charlotte’s lead nurse, telling us what each machine was for, each medicine. And I remember needing the nurse in charge of each of the next few shifts to repeat all that information because I couldn’t remember. I remember rubbing the crown of Charlotte’s head–it’s all we could reach–and wondering if she’d ever come home with us.

I remember all this and more. But I don’t remember the emotions. I channeled my energy into telling Charlotte’s story, never really admitting that her story was my story and Phil’s story, too. I poured my world onto the page and hid behind my camera. I kept myself arm’s length away, maybe trying to protect my heart. I’m working on that now, hoping to put those emotions on the page and turn them, mingled with this blog, into a book that will help other parents.  Why? Because Francie Paul invited me to the most amazing event, the Tillman Foundation’s TendHER Heart Luncheon, honoring mothers of children with complex medical conditions, mothers who got to bring their babies home, and mothers who didn’t. I’ve been grateful to Francie for many things over the years, but for this gift above all. Not only did I find two “heart mamas” to sit with during lunch, but I got to hear the inspirational words of Stefanie Boyce, who not only summed up what each of us had gone through in our unique ways, but who did so lyrically and with grace. If you read nothing else this week, read her essay “I see you, mama: A word for mother’s navigating a different dream.”  Philippe and I have been navigating a different dream. And we’re so grateful that it is interwoven in so many ways with a “regular dream.” Stefanie

In many ways, maybe most ways, it is Charlotte’s story. And it has a happy beginning (she’s only twelve, ya’lll, she IS just beginning). Tomorrow that 21″ long, 5 lb. baby will run in her first track meet (and she’s now at least 5’6″). She’s good. She’s better than good. She rocks.  But, at her request, this blog will only tell her story now with her permission and her review. Otherwise, when I post it will be my story, my journey to being a regular mom.  I welcome your input at any time.

Want to know how May 16, 2005 went down? Click here.

The Ripple Effects of Living with Congenital Heart Defect

I usually blog and post a lot during Heart Month, but not this year. It’s not that Charlotte is any less a heart patient, or that we are any less aware on a daily basis of how her heart history affects our lives. Rather, I think we are more cognizant of knowing what we don’t know.

Cropped Heart

Catherization image by Dr. Jeffrey Gossett, Oct. 2012

Truly, the ripple effects of CHDs are mysterious—they creep up on us and smack us over the head in very powerful and emotional ways. Ripples don’t have to be about Charlotte’s physical health. They can be about my emotional health (have you ever had to pull over in the car and sob because you suddenly flashed on all the hard things you and your child endured 12 years ago?) or her cognitive or emotional development (have you ever had to consider how being cut up as a baby might subconsciously affect your child’s ability to navigate adolescence?) or her psychological development (hmmm….as her body changes how do all of those scars affect her self-image?).

These are not only our mysteries. The neurodevelopmental outcomes of CHDs are a new area of subspecialization. Dr. Bradley Marino recently opened a research center at Lurie’s Children that looks at neurodevelopmental outcomes for infants through toddlers. That leaves us wanting longitudinal research that will help us understand what obstacles our super-bright kiddo might have to overcome to achieve all that she wants to in life.

For 12 years, we were confident that every medical decision we made was well-considered and necessary. We had the very best possible partners in Charlotte’s cardiologist, Luciana Young; cardiologist interventionist Jeffrey Gossett; and her surgeon, Carl Backer. 2016 was a year of big changes for Team Charlotte the year of change: Dr. Young has moved to Seattle, Washington and Dr. Gossett has moved to Los Angeles. Dr. Backer is still here—thank goodness!—but chances are quite good that Charlotte will never need another open heart surgery. Her next procedure would likely be a catheterization. And while we don’t think we’ll need more than annual check ups for years, change is change. And change, like those ripple effects, leaves us in uncharted territory.
So, in honor of Heart Month, I’ll enumerate what we do know. Charlotte is a heart patient. She is one of about 40,000 children born each year with a CHD. According to The Children’s Heart Foundation, CHD is the most common cause of infant death due to birth defects. Some of those children die before they are diagnosed.

Charlotte is one of the lucky ones. She is a best-case outcome Truncus Arteriosus Type 1. She does not have any associated chromosomal deletions or syndromes. If you didn’t know she were a heart patient, you wouldn’t know she is a heart patient. In fact, my guess is that most of her classmates don’t remember her surgery in 4th grade and that none of her middle school teachers knows her health history.

She’s had:

  • 3 open-heart surgeries,
  • two angioplasties,
  • one diagnostic catheterization
  • G-tube placement surgery.

Complications* (more than likely) related to her CHD include:

  • feeding issues that resulted in a gastric feeding tube for 3 years,
  • reflux (with as many as 8 changes of clothes a day);
  • gross and fine motor delays as a toddler;
  • plagiocephaly resulting in a helmet;
  • lower than normal visual processing speed;
  • and scoliosis

It seems like a big list. Compared to other children we know—heart patients and cancer patients and CP patients—it’s really nothing. And, like I said, we can forget about it for days and months on end. But, it’s still a lot. A lot for a 12 year old to process when she sees herself in the mirror. A lot of mystery to add to the mysteries regular kids face.

So, thank you for learning a bit about the CHD kid in your midst. She’s unique because of her heart. But she’s special because of her heart. (More on that soon.)

Half a Decade of Charlotte!

Charlotte, May 2005, before her first open heart surgery.

*Complications that we know about to date and that Charlotte is okay with us talking about

Memories, Milestones and a Near Miss (bonus orthopedic update)

Facebook reminded me today that Charlotte spent October 25, 2012 at Lurie Children’s after her cardiac catheterization. While her heart-a-versary (May 16) never evades me, this date had slipped my mind. It was a blip,  a near miss in one way (as she wouldn’t need open heart surgery for another 2 years) and a reminder in another (it had been five years since her last heart intervention). Today, being reminded of Charlotte’s medical complexity on a day when all we had to deal with was typical adolescent anxiety was a gift.

hero garden 1

Charlotte is blessed with a mild version of truncus arteriosus, if a heart defect can be mild. She has no genetic syndrome (like Down Syndrome or DiGeorges, both closely associated with heart defects). She has no neurological, cognitive, or developmental complexities despite the strong correlation between congenital heart defects and ADHD, and between heart defects and learning disabilities.

But, while she has not had any surgical or heart complications (knock wood), she has not gotten off scot free. She is among the estimated 44% of CHD patients who develop scoliosis. So far, so good. her curve is at 5% or so and should not require surgery or a brace. (I did have her read Judy Blume’s Deenie this summer, just in case.)

We learned at her orthopedic appointment last spring, however, that she also has leg length discrepancy. That’s a fancy way of saying that one leg is significantly shorter than the other., the initial assessment indicated that there was as much as 2cm difference between the legs. Dr. King recommends surgical intervention for discrepancies +2cm.  The surgery requires two small incisions near the knee cap through which the doctor manipulates the growth ligaments on the longer leg to stop its growth. The surgery is timed so that the child will grow roughly as much as the discrepancy after surgery, letting the shorter leg catch up. There’s about a month on crutches and discomfort.

In October, Dr. King took special x-rays to measure each bone in the leg and determine just how big a discrepancy we’re facing. Special x-ray = laying a yardstick down next to the leg and then studying and measuring the resulting image. Not nearly as high-tech as I’d expcected!

The initial assessment indicated that there was as much as 2cm difference between her legs. Dr. King recommends surgical intervention for discrepancies +2cm.  The surgery requires two small incisions near the knee cap through which the doctor manipulates the growth ligaments on the longer leg to stop its growth. The surgery is timed so that the child will grow roughly as much as the discrepancy after surgery, letting the shorter leg catch up. There’s about a month on crutches and discomfort. They figure out the timing based on a hand x-ray that allows the doctors to determine the child’s bone age.

Charlotte and I had the same reaction to the news. We felt like we’d been punched in the stomach and resisted the urge to cry. As soon as we got home, I locked myself in the bathroom and wept like a baby. I couldn’t imagine my poor baby being surgically prevented from growing. And, based on her initial reaction, I knew that if she needed surgery we would be facing a different, and deeper, kind of anxiety than with her last heart surgery. The difference betwen 9 and 11 years old is significant in that regard.

About a week later, Dr. King called with the official results of Charlotte’s bone age study and leg measurement. The bottom line: the in-depth measurement shows only a 1cm discrepancy. So, for now, NO SURGERY FOR CHARLOTTE. Just six month check-ins until she finishes her growth spurt.

We  were all so relieved. A reminder of Charlotte’s forever status as a CHD patient, and a near miss in terms of another, new kind of surgery. And a chance to see just how like a giraffe she will naturally become. She’s topped 5’3″ already and towers over her friends, a cousin, and lots of adults.

With our gratitude to whatever powers continue to let Charlotte lead a regular life, our hearts go out tonight to Rosie Rose, a 12 year old who has been living with brain cancer since she was three. Today she had her tenth brain surgery (23rd surgery over all). She, her mom, and sister are the true warriors–living on their faith in G-d and using their spare time to raise money for Lurie Children’s and pediatric cancer. Please keep Rosie in your prayers.