Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.

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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?