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!

Orthopedic Follow Up

When we last left Charlotte on her medical odyssey, she had had “scoliosis” added to her already extensive and impressive list of diagnoses. Fortunately it is not life-threatening, nor even (at this point) life-altering.

We met with Dr. King, the orthopedist, in August and, based on his findings, he suggested a six-month check up so that he could ascertain if the curve in her lower spine is increasing quickly or not.


A refresher–the original diagnosis noted a 15% curvature, just enough above average (10%–we all have some curvature in our spines) to elicit a diagnosis.

This week’s follow up shows the curvature holding steady at 15%. So we are officially on a yearly rotation for follow up unless we notice something or the doctor does. At this point, he doesn’t expect to see much change until she hits her growth spurt in about 3 years.

On the growth spurt front: Dr. King mentioned the “growth spurt” just after I learned that Charlotte has grown 1.3 inches since her August visit. At 4 ft. 8 ins. she is officially less than one foot shorter than I am, and perhaps more interesting, less than 4 inches shorter than her cousin Jamie (Jamie is none to pleased about this, by the way).