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
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.
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.
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.
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.
–3 open-heart surgeries,
–one diagnostic catheterization
–G-tube placement surgery.
Complications* (more than likely) related to her CHD include:
–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;
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.)
*Complications that we know about to date and that Charlotte is okay with us talking about
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.
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.
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.”
“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. The 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.