Monday, June 14, 2010

What I Know for Sure

Alyssa and I have known each other since 2002, long before we had our second babies -- our heart babies. In June 2006, when my son had open-heart surgery, Alyssa organized meals, collected baskets of goodies, and took care of our house and critters while we were gone. Her support, as well as support she rallied from others, got us through. She did it for no other reason than she cared. She had no way of knowing that 2-1/2 years later, she would face a similar crisis. When Alyssa learned her unborn daughter had complex CHD, Broken Hearts of the Big Bend rallied for her. For no other reasons than because we cared and we understood.

What I Know for Sure

On Aug. 21, 2008, when I was five months pregnant, during what we believed to be a simple follow-up ultrasound, my husband Shevie and I learned that our unborn daughter had multiple complex congenital heart defects (CHD). Devastated does not begin to describe how we felt.

When you learn something is wrong with your unborn baby’s heart – her heart – it is hard not to think the worst. It’s even harder to imagine you somehow will emerge from the harrowing experience you now know is ahead of you better than you were when you entered it. When you don’t know the direction of the tunnel you are in, or where its end is, is it really possible to see the light?

For me, it was impossible to see the light during that critical time, but it was impossible for me not to believe in it. After all, since 2006, I had been a volunteer with Broken Hearts of the Big Bend. I worked with Karen Thurston Chavez when she started the group in June 2006, the same month her son, William, had open-heart surgery at Shands Children’s Hospital.

I had no idea at that time the work Karen was doing to educate and unite families in the Big Bend area who were faced with CHD would be so relevant to me. I had no idea when I was volunteering, I was helping to make a better life for a baby I then had no idea I was going to have.

What I do remember is wondering how the parents in the group managed to be so brave. I remember looking at the kids and thinking many of them looked so healthy that if I didn’t know they had heart defects, I wouldn’t have suspected it at all.

What I learned from Karen and others in the group through volunteering and just talking to them prevented Shevie and me from having to blindly navigate our way through Tallahassee’s medical community, which, for the record, does not include a board-certified pediatric cardiologist. We knew that to give McKenna the best chance at not only a good outcome but mere survival, she needed to be born at Shands at the University of Florida under the care of its Congenital Heart Center’s pediatric cardiologists.

To make this happen, Shevie and I traveled back and forth to Gainesville multiple times after the fateful ultrasound. Two weeks before my due date, we left home and checked into a hotel in Gainesville. Leaving Victoria in Tallahassee with her father (my ex-husband), and his family was hard because I did not know when I would be able to come home to her. I was thankful, though, that she got to stay with family and I wondered what other families, who didn’t have anywhere to leave their other children, did in such circumstances.

While in Gainesville, we spent 15 days walking the mall and other places trying to get my labor going, but were unsuccessful. On Nov. 25, we went in for an induction. McKenna was born the next morning at a healthy 7 lbs. 1 oz. After her birth, doctors confirmed she had double-outlet right ventricle, hypoplastic left ventricle (not full-blown hypoplastic left heart syndrome) and atrial and ventricular septal defects. We were so relieved because that was so much better than her original diagnoses of hypoplastic left heart syndrome, double-outlet right ventricle, transposition of the great arteries and atrial and ventricular septal defects. The plan for McKenna’s CHDs included the three-stage repair – the Blalock-Taussig Shunt, the bi-directional Glenn and the Fontan. She did so well after birth, she did not need the BT shunt, but did require a heart catheterization to widen her ASD to help her heart work more efficiently. She had her Glenn done in March 2009 and will have her Fontan in the next year or two.

The next five months were simultaneously sweet and filled with anxiety. In addition to the typical trials of having a new baby – sleep deprivation being the hardest to tolerate – we had numerous, constant doctors’ visits and an emergency hospital stay. When we were lucky enough to be at home, I feared that anything – too much crying or excitement – could be harmful to McKenna.

I wish I could say I endured these struggles with grace. Truth is, I spent so much time and energy trying to do everything I could to keep McKenna well and to not neglect Victoria in all the chaos, I spent what little time I had remaining praying, crying or cursing, depending on the circumstances.

I’ve had some pretty dark times in my life, but none as dark and complex as this. On one hand, I had a beautiful, new baby girl and relished watching her thrive. Yet on the other, I spent every moment in conflict, afraid I would lose her and unsure how I would go on if I did.

Those who know me well, know that above all things, I treasure feeling secure. In retrospect, I realize the intense conflict and despair I felt during those dark times were the beginnings of my coming full circle and learning to accept what felt like a hard, bitter truth: anything can happen to any one of us at any time. We really only imagine we have any security at all. Though accepting this truth blows a hole in the adage, “ignorance is bliss,” it truly gives new meaning to understanding the light at the end of the tunnel, and making a conscious choice every day to live in it.

And so now, just after the 18-month-mark, as I find myself sitting here, writing about it all, I know for sure I am a changed woman. In some ways, I’ve changed for the better: I usually take pleasure in activities that used to feel like drudgery: driving home, tackling tough homework assignments with Victoria, cooking. I know my worst day at work is better than the best day when my baby was in the hospital.

In others, I’ve changed for the worse: My temper is horrible. It has been all along, but I’ve lost the ability to control it when I most need to. I also probably border on obsessive-compulsive disorder when it comes to worrying about germs. I think about having enough Lysol® wipes and hand sanitizer in the house more than I think about having enough food. Sad, but true.

McKenna is thriving. She loves to eat and weighs a healthy 22 lbs. She takes medicine three times a day and we go to Shands for check-ups once every few months. Victoria is an awesome big sister. We know McKenna needs one more surgery, the Fontan, but we’ve had a lot longer to prepare for it than we did the first one and we are not doing so under duress. Shevie and I have both been fortunate enough to keep our jobs and have excellent insurance. I think very often about parents we met at Shands who were losing their jobs or being evicted from their homes while they sat by their child’s bedside. When I think of them, I know our trials are hardly the worst or most heartbreaking.

My mind often wanders back to the days, the years, before McKenna was conceived or even thought of. The days when I was just a volunteer, asking myself how the parents in Broken Hearts of the Big Bend managed to be so brave when their children’s hearts weren’t anatomically perfect. Now that I’m one of them, I can answer the question.

My answer is…I don’t know. In the thick of it, it didn’t feel like bravery, it only felt like doing what I had to do to save my daughter’s life. If it happened to you, you also would have done the only things you could: prayed to God, trusted your doctors and loved your baby.

Here’s what I know: In the end, it all has been worth it, and my new normal is pretty sweet. McKenna is beginning to use words now and I’m sure, if she knew how, she’d tell you the same.


  1. Beautifully written, Alyssa. :) I have always believed in the unseen interconnectedness of all the things we do and everyone we know. It was no accident that you got involved with BHBB.

  2. Great post, and a great example of what a CHD Support group does.

    The Funky Heart