Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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

 

 


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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.

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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.


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Happy Heart-a-versary to My Heart Warrior

Charlotte’s eleventh birthday was last Monday, though the celebrations began on April 30. By the actual birthday, Charlotte had had a slumber party (with cupcakes), a special date with Dad to see her Red Sox beat the White Sox (with ice cream), and fancy sushi with both of us (with ice cream x 2). On Monday, she had, as she has for at least 6 years, fried cod with chipotle mayonnaise and a homemade chocolate cake. The only thing she didn’t get was her annual birthday letter on the blog and a present from me.Today was a regular Monday. So regular, in fact, that I nearly forgot that it was Charlotte’s heart-aversary.

 

Eleven years ago today, Charlotte had her first open-heart surgery.  As I wrote in 2011:

“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 all day.”
Last year, just three months after her third open-heart surgery, the significance of her heart-a-versary was not lost on me:

“As I made my coffee a few minutes ago, I was struck by the date. Ten years ago today, I clutched my coffee in a paper cup as Philippe and I awaited hourly updates from Julie about our tiny baby daughter’s first open heart surgery.  Goldman-R1-048-22AThe day had begun excruciatingly early for a mom recovering from a C-section. We arrived at dawn at the hospital and, shortly thereafter, handed our bundle of seven-day-old love to a very tall anesthesiology fellow who promised to care for her as if she was his own. We turned to walk down the stark white hall of the surgery suite towards the waiting room and Philippe nearly collapsed in my arms, overwrought with concern and fear.

Today, Philippe was, as usual, up with the sun. I’m savoring my coffee on the front porch in my favorite kitty mug waiting for him to come home from doing some early morning errands. Charlotte is upstairs, sleeping or reading. I don’t know, I haven’t seen her yet. I do know that she is safe, sound, and healthy thanks to the doctors that cared for her on May 16, 2005–Drs. Carl Backer, Gus Mavroudis, and Bob Stewart.”

We will never stop being grateful to the doctors and staff at Lurie Children’s. And we’ll never cease to be amazed when we hear another parent’s gratitude–as we did tonight when an acquaintance told us that her son (who has an 18-year old daughter) had his CHD repaired at Lurie Children’s. Every now and then, the enormity of what might have been washes over me. More than once I have been reduced to sobs–the tears that never came on May 16, 2005. The tears I couldn’t cry because I wouldn’t let myself think about what was really happening in that surgical suite. The tears Philippe shed, in full knowledge that the outcome might have been completely other.

We are so blessed to have this magnificent facility in our backyard. It was with this gratitude that Philippe, Charlotte and I, along with Charlotte’s first babysitter, Karley, and her Chicago grandmother, Jenny, and a host of other friends and friends of friends participated yesterday in Move for the Kids. Team Charlotte has raised $2,787 towards our $5,000 goal. In honor of Charlotte’s 11th heart-a-versary, please join us in supporting Lurie Children’s by supporting our walk. You can still donate to Team Charlotte (just click the link).

No birthday letter this year, but as always, we love you, Charlotte. May you continue to grow from strength to strength.

 

 


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Short (or Tall) and Sweet, An Orthopedic Update

If heart surgery didn’t stop Charlotte from running Move for the Kids 5K for Lurie Children’s last year, scoliosis sure won’t slow her down this year. And, since she’ll miss the Girls on the Run 5K for a school trip, she’s bound and determined to run the whole thing.

Last month Charlotte and I saw Dr. King for her annual scoliosis check up. We visited him at Lurie Children’s satellite office on Clark and Deming.

She measured a full 5’2″ tall. We weren’t surprised by that because she had been taller than Dr. Young at her cardiology check up the previous week.

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Charlotte in paradise. Maui, 2016

Charlotte’s x-ray showed no appreciable increase in her curvature. It remains about 5-7% curved, which Dr. King says many of us have without ever knowing it. He believes that if her curve stays where it is no intervention will be necessary. No surgery. No brace. I couldn’t have been more grateful to hear that as I had visions of Judy Blume’s Deenie swirling in my head. Yep, I know braces have changed a lot, but I still had those visions.

 

But, given that girls hit their growth spurts between 11 and 14 (don’t tell Charlotte that, she thinks that two inches a year is a “spurt”), he asked to see her again in 6 months.

Research connecting scoliosis, CHD, and thorocotomy/sternotomy is inconclusive. But I can’t help but think they are connected, based on anecdote. When Charlotte was diagnosed, her friend and fellow Truncus Arteriosus patient Jessica (who is a grown up) wrote to me that she had scoliosis also and suspected it was related to the surgeries she’d had as a child. Hers was diagnosed until intervention was too late and she suffers some pain.

Please support Charlotte as she Moves for the Kids to give back to Lurie Children’s and doctors like Eric King. Just click on one of the links above or on the photos below and make a donation, or register to walk/run with us.

 

 


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Won’t You Join Team Charlotte on May 15, 2016 and MOVE FOR THE KIDS?

You’ve been with us from the beginning, from the first emails we sent in early 2005. So, you’ve heard me ask this a lot—please help us support Lurie Children’s. Specifically: Philippe, Charlotte and I would like to invite local Team Charlotte members to join us at Soldiers Field on Sunday, May 15 for Move for the Kids 5K, a fun family outing that supports Lurie Children’s  and long-distance team members to support us as “virtual participants” (yes, that’s a thing!)MFTK 2015

We know that we are not the only family on this list who has experienced first hand the extraordinary care given by the doctors and staff at Lurie Children’s or had their child comforted by the patient-friendly surroundings of the new hospital. In fact, some of you have probably spent more time there than we have. Whether it has been a visit to the ER for an injury or illness, a tonsillectomy, asthma, allergies, or surgery, if your child has been a patient at Lurie Children’s, we’re pretty sure you understand why we are so committed to the hospital.

We have never been more aware of the power and importance of philanthropy than during our 5-night stay in the Regenstein Cardiac Critical Care Unit last year. The doctors and staff rely on philanthropic dollars to ensure that they can continue to care for any child, regardless of their ability to pay; to do cutting-edge research; and to recruit the finest minds in pediatric medicine. The hospital is truly a gift to our children, and to the 174,000 children from 50 states and 40 countries that it treats each year.

So…join Team Charlotte (click on the link) and walk or run with us! Strollers are welcome, but pets aren’t.

Team Charlote MFTK

Team Charlotte 2015

If you can’t walk or run on May 15, perhaps you’ll consider a donation to help us meet our Team Charlotte goal of $5,000?


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On the 366th Day We Rejoice, A Cardiology Update

For most of the year, we can ignore that Charlotte is a heart patient. She keeps up with her friends, grows so much that we forget the terrible “failure to thrive” days, and seems about as regular as the next kid.

That was different last year, of course, since she had to take a break from her regularly scheduled awesomeness to awe us with her post-heart surgery resilience. Charlotte recovered beautifully and returned to regular activities on schedule. She trained for a 5K and took tennis lessons. Once her surgical wounds had healed, she moved on. Sort of. If we didn’t talk about the scar. (That’s another story for another day. Suffice to say that a preteen girl is self-conscious about a new scar.)

Then she had her six month check up and the scar began to fade. In the past few months, the surgery has become an anecdote. “Remember when I was mean because I was taking Dilaudid?” “Remember what I said when they removed my breathing tube?” “I didn’t mind the hospital so much. I got to have pudding for breakfast and got lots of presents.”

Yesterday we were reminded, as we are each year, that heart surgery isn’t the stuff that normal childhood memories are made of. It’s real. It’s traumatic. It’s serious. But, it also gives us the chance to visit with the excellent Dr. Young and the incomparable Elizabeth Capella, LPN.

perfet heart_031616

I’ll spare you the thousand words–what you see here is a perfect heart. Or at least as perfect as Charlotte’s mended heart will get. Her bloodflow velocity holds steady at 2.5 (normal is around 1.8; this elevation is to be expected given her conduit). She has no evidence of stenosis or other complications And best of all, while Charlotte was terribly uncomfortable with the idea of a male sonographer, she took a deep breath, focused on the Harry Potter movie and let Mr. Peng take her pictures.

We’re back to annual check ups.

Team Charlotte, gear up for Move for the Kids 2016. So much to celebrate. Charlotte dares you to RUN it with her. Click to join Team Charlotte, or donate if you can’t participate.

MFTK 2015

 


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

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 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)

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