Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.