5 Myths About Telling Your Story

Your story can be a very useful tool when working with others to make a difference.

Move past the myths and share your story on our website!

1) No one wants to hear my personal story.

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What you tell your friends is one thing.  But, it’s different when you are telling your story to a person with the power to make a change. Whether it’s a lawmaker, a physician, researcher, or insurer, they need to hear your story.  You see, all the numbers in the world are not nearly as powerful as your personal story, your experience.

2) You have to be a social person to tell your story.

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There are lots of ways to tell your story that don’t even involve talking!  Start by getting your story in writing.

There is no one exact way to do it. After nine years of rewriting my story, I now have a short version, a long version, a funny version, and tucked inside for special occasions, I have that very emotional version that still takes my breath away.

Once you have your story down on paper – submit it to our website!  We are building a collection of stories to help inspire others and we look forward to adding yours.

3) Telling your story takes a lot of time.

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It might the first few times.  It took me several hours to get my thoughts on paper, several days until I was finally happy with it, and it has changed many times over the years.  Now, I can write it in a quick email or share it in a passing conversation.  I’ve even hammered out a 30 second version I can tell someone on the elevator!

4) You have to be a heart defect expert for anyone to listen.

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You are the expert – you, or someone you love, has been impacted by heart defects and you know more about your experience than anyone else.  You don’t need to know the medical details or the latest research.  It is your story that matters.

5) Telling your story doesn’t make a difference.

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Oh, yes, it does.  I have heard countless times how someone’s story has changed minds, tipped the scales, and moved mountains.  Mine has, and yours can, too. Try it and see what happens.

The Pediatric Congenital Heart Association firmly believes in the power of our stories and is committed to bringing them together to be the resounding voice of the CHD Community.

We are building a collection of stories that can be found on our website.  A few stories will be featured on our home page.  Others can be found using the links on our blog page. These stories can be used to inspire others to take action, too.  Be a part of something bigger – share your story today, because together, we will make a difference.

 Amy Basken – President, Pediatric Congenital Heart Association

 

Mirabel Atkinson

Nine-year-old twins, Mirabel and Sofia, share a special bond.  Born at 32-weeks, they were more exceptional than most identical twins in that they shared a placenta and an amniotic sac.  But one significant difference they have is that Mirabel was born with a congenital heart defect, or several to be more precise, including hypoplastic right heart, transposition of the great arteries and a couple others.  We were fortunate to know about all of these complications before our girls were born, but that didn’t change how challenging the pregnancy and early years have been.

Being born early, they both required time in the NICU.  Sofia mostly just needed to grow and was discharged at about one month.  Mirabel’s case was different and the doctors anticipated her needing the first of three staged surgeries (the Norwood, the Glenn and the Fontan) within days of birth.  But because she was so small, we all waited and watched—through many good and bad days.  And then at two months, when the doctors finally determined that she could hold off on the Norwood procedure and have any necessary changes to her heart combined with her Glenn, they discharged her.  We frequented the cardiology clinic from that point on, often with several visits a week.

Mirabel had her first heart catheterization at about 6 months.  I thought it was the end of the world when we handed her over to the anesthesiologist and I watched her terrified eyes silently asking me what was happening.  But I learned that wasn’t anything compared to surgery; she had her first open heart, the Glenn, at 8 ½ months.  Mirabel’s strength and tenacity had already been proven and she did remarkably well during her Glenn and was discharged after only 6 days.  We maintained regular weekly and then monthly visits to her cardiologists.  She had a second catheterization, mostly for diagnostic purposes in preparation for her next surgery, at about 15 months old and then the Fontan surgery at age two.  Once again, she responded well and was discharged after only 8 days.

We knew Mirabel wasn’t “cured” at that point.  The regular cardiology check-ups, her slower growth (compared to her identical sister), daily medications, how quickly she caught colds and the flu, and her general lack of energy all served as reminders to us that she was different.  But we tried to act and live as normally as we could.

And then at age 5 she needed another heart catheterization to close a fenestration (vent hole) in the hope of improving her oxygen saturation levels.  We had always been open about her heart condition and frequently looked at photos, but she didn’t remember any of the previous interventions, and so when we told her she needed to have the cath, she didn’t take the news well.  It was really hard listening to her ask questions like, “how big of a knife are they going to use to cut me open…will it be like the ones in the kitchen?”  But, guided by an excellent social worker, we made it through with only a few minor complications.  Her kindergarten class made a giant heart card with well wishes and all of their signatures.   And we thought we were done for a LONG time.

Then during the summer when she was 6, we visited the cardiologist for a regular follow-up and he told us that she needed another “surgical intervention” right away.  Eleven days later she was in surgery to enlarge a hole (VSD)—a “minor” open-heart surgery, as they go.  Mirabel was the calmest of anyone in the family; Sofia struggled the most.  Sofia didn’t like the attention Mirabel was getting and was scared about what she was hearing.  We all had to work through this together as a family.  She healed a little slower than the previous two open-hearts, but was still only in the hospital 8 days.  And she started first grade four weeks to the day after her surgery.   But it takes time for everyone to recover from something like this.

Two and a half years later, Mirabel is doing well and we are relatively “normal” again.  Her last surgery granted her more strength and energy than we had ever seen.  She has been well enough to play soccer with her sister in a neighborhood league, a far distance from when eating or crying too hard would wear her out and she would turn blue.

While Mirabel’s road hasn’t been easy, and her journey to keep her heart working as best as possible isn’t over, we have met many exceptional people and made some wonderful friendships with those having similar experiences.  We know what a courageous little girl she is and when we see fits of stubbornness we are quickly reminded that her stubborn attitude is what has kept her going through rough times.  Sofia has been her constant cheerleader and their bond and love they share will remain strong forever.