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

4 thoughts on “The Ripple Effects of Living with Congenital Heart Defect

  1. Pingback: #CHD Aware Parenting | Charlotte's Journey Home

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