Have You Loved Your Scar Today?

Broken Hearts of Florida is thrilled to partner with Rock Scar Love and Amy Tippins! 

An amazing woman with a big scar and a bigger heart, Amy and her RockScar Love inspire passionate lives through clothing. RSL celebrates sexy scars, the lessons they teach us and the strength they create.

When you shop from the Broken Hearts of Florida affiliate page, RSL donates 10 percent of the proceeds to Broken Hearts. We, in turn, use funding to support Broken Hearts programs and services,  such as our monthly potluck dinners for family and friends, nonperishable food for our Food from the Heart Pantry at the Shands Children's Hospital's pediatric intensive care unit, our annual May Day Picnic, and our Regional Forum on Congenital Heart Disease.

Help us help our families! Buy stuff! Plus, Amy's designs are so cool! Read more about Rock Scar Love and Amy Tippins. Then, GO SHOPPING!

A Picture That Paints a Thousand Words

Nels Matson, left, and my son, William, pull down the collars of their shirts
and show each other their scars from open-heart surgery. They both have
versions of partial anomalous pulmonary venous return. Nels' heart was
repaired when he was 4; William when he was 2.

At school tomorrow, William is supposed to bring pictures of himself and tell his class about them. Do you know what pictures he wanted to bring? The ones that tell his heart story. Wow! Lately, especially, he's been so reluctant to tell people about his heart, even hiding his scar. 

But I think the Broken Hearts' May Day Picnic helped him get past that. He got to see dozens of other kids, some with much more noticeable scars than his own, running around bare-chested, oblivious and proud of their bodies. At first, he wouldn't take off his T-shirt to go down the slide. Later, I couldn't get him to put his shirt back on.

I think one of the biggest highlights, though, was meeting Nels Matson (athletes4heart). I had tried all day to get William to talk to Nels but he was having nothing to do with it. Toward the end of the day when the crowds had thinned and William had pulled himself up to a table, munching on left over chips, Nels slyly sat at the table at William's height and started talking to him about William's three beloved bicycles. The rest, as they say, is history. 

Nels and William have similar heart defects -- different versions of partial anomalous pulmonary venous return. While heart defects aren't rare, this particular one is rare, and William's version (scimitar syndrome) is even rarer. So Nels was talking to William about his surgery and told William that he had had surgery, too, and that they both had scars. And with that ... they pulled their collars down and showed each other their scars! 

This picture paints a thousand words!
Thank you, Nels, for helping my son see he's not alone.

Those Massey Boys

I stepped away from my desk for a few minutes. When I came back to my computer, this picture was up on my screen. I LOVE this photo. I love these boys. Kyle, Kasey and Kevin are the sweetest, craziest, funniest boys. They have big, generous, loving hearts. 

They're known around these parts as "The Massey Boys." Kyle, Kasey and Kevin are almost 17. All three were born with serious, life-threatening congenital heart defects. Their parents, Keith and Elaine, did not know before their triplets were born that they had tetralogy of Fallot, a group of four congenital heart defects -- pulmonary stenosis, overriding aorta, ventricular septal defect and right ventricular hypertrophy.

The Massey Triplets were born in South Georgia and airlifted to Shands Children's Hospital in Gainesville, Florida. Shands/Children's Miracle Network keeps their story, along with an adorable picture of the triplets as toddlers. The doctors at the University of Florida have written about them; I mean, they're identical triplets with nearly identical heart defects. How often does that happen anyway?

Imagine that. Imagine raising identical triplet boys who have nearly identical heart defects. Triple the worries. Triple the anxieties. Triple the surgeries. And? Triple the victories. Triple the accomplishments. Triple the laughter. Triple the joys.

Those Massey Boys fight, they pick on each other, they joke and they play pranks. They laugh and take care of each other. They're talkative and delightfully noisy. Keith and Elaine have raised rambunctious, goofy, thoughtful, loving kids. And they've done it with amazing grace, calm and composure. The boys -- the family -- are involved in their school, their church, their local community, and the congenital heart community. They are proud, confident young men. They're so good to our younger heart heroes.

Every time I see this photo, this is what I think about. Thank you, Kyle, Kevin and Kasey, for being you. Thank you, Keith and Elaine, for sharing them with us.

Congenital Heart Disease

It’s the Most Wonderful Time of the Year!

To Raise Awareness of Congenital Heart Defects/Disease

So many great congenital-heart-defect awareness-raising things are happening here in Tallahassee this week and next week!

Tonight at 11 p.m. — immediately following Barbara Walter’s special, “A Matter of Life and Death,” at 10 p.m. on your local ABC channel — one of Broken Hearts’ very own, Ramsey Brown, will be featured on a segment our local ABC affiliate, WTXL.

Ramsey a few days post transplant.
Who looks that great after transplant?
Ramsey does!

Ramsey will share her story about growing up with congenital heart disease and her recent heart transplant at Shands at the University of Florida.

On Sunday, WTXL will interview Broken Hearts about its upcoming Open House on Tuesday, Feb. 8. Join us for our Open House and learn more about congenital heart disease, available resources for families and about Broken Hearts! Since its inception in June 2006, Broken Hearts has grown from its two founding families to more than 150 families across Florida, South Georgia and a few spots across North America. (Come over to Facebook and LIKE us!)

What events do you have going on during this Most Wonderful Time of the Year?! Tell us about them in the comments section below.

You know, as excited as we are about all that’s going on, we are missing more than ever one of our most influential congenital heart advocates, Steve Catoe — our Funky Heart. In Steve’s spirit and in his honor, we’ve taken the popular Christmas song, “It’s the Most Wonderful Time of the Year,” (I’m sending you to a neat video, featuring the original song.) and done something Steve used to love doing — rewriting the lyrics to make them CHD/heart-related!

Here’s to you, Steve!

(To the tune of “It’s the Most Wonderful Time of the Year” by Andy Williams)

It’s the most wonderful week of the year.

With our kids boist’risly yelling,

And everyone telling you,

“Just be a dear,

“And spread CHD stories all the year.”

It’s the most – most vital week of them all

With those CHD messages and advocate meetings

When friends are on call

It’s the most-most vital week of them all.

There’ll be parties for vic’tries,

Lighting candles for memories, and

Telling our stories on shows

There’ll be scary heart stories

And tales of our glories of

Triumphs we’ve made as we go.

It's the most wonderful week of the year

There’ll be reasons for sharing

Our hearts we’ll be baring

For our loved ones so dear

It's the most – most heard week of the year!

It’s the most wonderful week of the year.

With our kids boist’risly yelling,

And everyone telling you,

“Just be a dear,

“And spread CHD stories all the year.”

Surviving a Congenital Heart Defect

We are thrilled and honored to feature a guest blog by Steve Catoe, author of Adventures of a Funky Heart, one of the most informative and enlightening blogs out there, highlighting congenital heart disease. Thank you so much, Steve, not only for a great post, but for all that you do for the congenital heart community.

My name is Steve Catoe. I am hopeful that some of you remember me; last February I spoke at the Broken Hearts of the Big Bend Regional Forum on Congenital Heart Disease. 

I am 43 years old and I have a congenital heart defect -- tricuspid atresia, to be specific. In tricuspid atresia, the tricuspid valve inside of the heart never formed. There is a wall in the spot it is supposed to occupy, and because of that my right ventricle is very small and practically useless. A heart defect strikes 1 in every 125 live births, but tricuspid atresia is one of the rarer defects. Experts say that 1 person out of every 10,000 people have what I have.

A few years ago my cardiologist told me that as far as he knew, I was the oldest living tricuspid atresia patient living. A few weeks later I met a fellow tricuspid, a woman who is a couple of years older than I am. Personally, I’d rather be No. 2; people expect the leader to dress nice, act dignified, and be the spokesman for the entire group. I’m just a simple country boy, and I don’t do any of that very well!

My “secret” to living so long with a congenital heart defect could very well surprise you. To live with a heart defect, you have to first make peace with the fact that your defective heart will one day give out.

That may seem like a harsh statement, especially to a young CHDer or a heart parent. But odds are, that is what will happen. Accidents do occur, but most people succumb to natural causes. We will, too -- but our weak hearts usually mean that we are granted fewer days.

And once you understand and can live with that fact, then you can ask the real question: What can I do to push that Final Day further into the future?

The short answer is “Take care of yourself!” Taking care of yourself encompasses everything from watching your diet, starting an exercise program, and even includes simple things like fastening your seat belt.

A proper exercise program can strengthen your heart and give it the energy it needs to fight off infection and illness. The stronger you can make your heart, the better - especially if you are starting with a weak heart. Be sure to ask your doctor what exercises work best for you, but for me, the answer is walking. With a walking program, you can move at your best pace and go as far as you are able -- and the next day, attempt to go just a little further! As you pick up the pace, your heart rate goes up and you really start to exercise your lungs. Over time, what began as a gentle stroll can turn into an intense exercise routine. And all you need is a good pair of shoes.

Watch your diet, especially if your doctor has given you a diet to follow. Try to reduce the amount of salt you consume. Your heart has to pump blood to all parts of your body, and the more you weigh, the harder it has to work. Losing as few as 5 pounds helps, but if you could lose more, it is usually a good idea. A heart that is used to pushing blood through a 175-pound body will have an easier job if you could lose 10 pounds!

Don’t let dumb luck ruin your life. Fasten that seat belt and don’t drive like a maniac. Don’t smoke, don’t drink to excess, and don’t do illegal drugs. Too many people fought to keep you alive and you have survived too much. Don’t waste your life by giving it away.

Something else you can do -- and it would be a major factor in surviving a heart defect -- is that even though you understand that your heart will eventually let you down, don’t run and hide. Don’t be scared, and never say “I can’t do that, I have a bad heart.” 

There is more than one way to skin a cat, and probably more than one way to accomplish any task you face. Don’t just live your life...embrace it, enjoy it, and make the most of it. Inspire others.

And remember that every heart -- especially yours -- deserves to live a lifetime!

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

By Alyssa Brown

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.