June 24th, 2010: A Chat With Dina Moon

Not too long ago, when I was ‘Googling’ my name (something I do from time to time to make sure I’m not connected to anything icky—these are things you have to do when your name is out there!), I came across an incredible Website called, “Chynna’s Helping Heart.”

As many of you know, my baby girl, Sophie, has a heart abnormality (part of which is a thickening in her Aorta.) Fortunately, it hasn’t impeded her growth or development and we watch her closely. I can’t express how grateful I am that specialists caught her abnormality while I was pregnant with her. Now we watch…wait…pray that she’ll be fine for the rest of her life. Dina Moon wasn’t given that chance.

Dina lost her daughter to a ‘hidden’ heart abnormality that her daughter had from birth. And now, she fights to make sure everyone knows about these congenital heart abnormalities so no other similar losses have to happen.

This interview was originally featured over at “The Gift” blog. As you all know, our blog is all about celebrating children and families with special needs and the caregivers who fight to have those needs met. I guarantee you will be enlightened and inspired by Dina, and Chynna’s, story.

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CHYNNA: Thank you for joining us over at “The Gift” blog, Dina. (And Welcome to "Lily Wolf Words!") Can you tell us a little bit about your background?

DINA: I’m a 43 year old (I like to say “30/13”) mother of 3 and stepmother of 1. I manage an office for a staffing company in Addison, TX (suburb of Dallas). I am married – 7 years – to a banker. We live in Rockwall, TX. I’ve lived in or around Dallas my entire life. I’ve been a stay-at-home mom, a librarian, and a staffing/hr manager. I’m an AVID reader who refuses to use a Kindle. I love animals, antiques, black & white movies, Lucille Ball, 70’s folk music, and just about any other sort of music. In a different life I played the piano and classical violin. I refuse to grow up. I refuse to give in. I don’t know what I want to be when I grow up.

CHYNNA: We have a lot in common, Dina. I too took piano and violin. I’ve always found comfort in music and turning to our God-given talents. You’ve created a foundation in the name of a beautiful person named Chynna. Can you tell us about her?

DINA: She’s my FAVORITE subject! Chynna was incredibly smart – upon her sudden passing she was being courted heavily by Baylor University, though she aspired to Texas A&M. She was a lifelong dancer – ballet, tap, jazz, hip-hop….tap and CLOG were her forte. She was one of only 2 junior high students to be accepted into the high school drill team. She was smart beyond smart. She was a good girl. Her mother was still her best bff – ask anyone. She was witty. She was gorgeous. She was sarcastic – my favorite quality. She had the world by the horns. There was nothing my baby girl couldn’t do! She was the incoming varsity cheerleader mascot. She had her 1st serious boyfriend.

She never made it to 17. She never went to a prom, though she was buried in her prom dress. She never graduated from high school, or got married, or had a baby……..

CHYNNA: Oh, Dina. You have me tearing up already. Let’s talk about Chynna’s condition in more detail. What is Coarctation of the Aorta? Are there any symptoms we can watch out for?

DINA: A Coarc is a pinch in the aorta, like a kink in a garden hose. It means the heart is pumping faster, harder….but not getting enough blood to the extremities (the pinch clamps down each time the heart beats). Chynna’s defect was likely so faint that it was undetectable at birth. As she grew, so did the coarc.

Symptoms: dramatically different blood pressure readings from the left arm to the right arm (also the legs! Who knew you could have your blood pressure taken in your legs!), cold feet – due to lack of blood flow, feeling faint to actually fainting, asthma type symptoms which are actually NOT related to bronchial issues…..and any other heart symptoms….murmurs, syncope, etc.

CHYNNA: I can see why it would be a little difficult to detect a Coarc at first, especially when it’s milder. Those symptoms could be hints to other issues, can’t they? And, no, I had no idea you could or should have blood pressure taken in your legs! Now, how did you discover that Chynna had this condition? What events led up to the discovery and what happened?

DINA: Chynna was a perfectly healthy high school junior (or so we thought). In late March, 2008, I received a call at work that my daughter had fainted in AP English class – but was coherent and lively. Still, the nurse needed me to see our family DR before Chynna could return to class (fine with me, of course!) – the nurse also discovered, upon further examination, drastically different blood pressure readings in each of her arms. This discovery and the visit to our family Dr. led to a referral to a pediatric cardiologist, which led to a discovery of the coarc, which led to a consultation with a pediatric heart surgeon, which led to an open heart surgery, which led to her death. In less than 2 weeks from her diagnosis, she went from a supposedly healthy teenager……to dead. Sad…but totally true.

CHYNNA: How frustrating and devastating, Dina. I cannot even imagine the pain you must have felt. What can be done to raise awareness for CA? Can we test for it after birth? Can they see it on a sonogram?

DINA: Here’s the deal – there is no apparent reason to test a seemingly healthy baby for a heart defect. Most of the time, CHD’s (congenital heart defects) are SEVERE AND QUITE OBVIOUS at birth, if not in utero. In some cases (as in Chynna’s), the defect is quite minor at birth. When you have an infant who seems healthy, it becomes increasingly difficult to back-track the problem, leading to misdiagnosing the ailments in an older child. Chynna was diagnosed with: exercise induced asthma, potential ACL issues in her knees, and even Osgood-Schlatter Disease & syncopathy. In retrospect, we think those were all symptoms of decreased blood flow to her extremities related to her Coarc, but we have no proof.

This defect CAN be detected on a 3 dimensional test (sonogram). Unfortunately, without a diagnosis, normal insurance will not pay for this testing on a seemingly healthy child! Thankfully, we’ve aligned ourselves with another charity, Living 4 Zac….as a parent, you can take your child to the cardiac unit at Plano’s (TEXAS) Baylor Hospital facility on any given Saturday and mention Living 4 Zac…..the tests (normally thousands of dollars) will cost the parent of a healthy child only about $100!!!!

CHYNNA: As a mom with a child who has a known heart abnormality (even if they can’t tell us whether or not it will ever turn into anything more serious!), I can completely appreciate your efforts in having parents have access to these tests. That’s incredible. Please tell us all about your Website and the resources you offer there.

DINA: We offer a story. When we learned of our daughter’s diagnosis, there were no resources for parent’s of an older child (puhleeze! She was practically an adult!!!) All we found were stories of infants, or even fetuses. Granted – ALL OF THOSE ARE IMPORTANT – we truly believe that, still…..what do you do if your child is on top of the world, good at practically everything, gorgeous, smart, hilariously funny…….you don’t automatically think of a birth defect, right? Here’s what we have to say to the world: Don’t think your almost college age child has a birth defect? Guess what, folks…neither did we.

CHYNNA: I believe you’re offering a much needed resource, Dina. Do you have any upcoming events, fundraisers or other appearances you’d like to share? How can we help you with your cause?

DINA: We will have our 2nd annual fundraiser, Fishing for Hearts, coming up this Labor Day! If you live in or near North Central Texas (Dallas)….you won’t want to miss this! We are teaming up with another charitable organization devoted to heart disease in young adults (Living 4 Zach)! More info will be available soon on our website at www.chynnashelpingheart.org.

CHYNNA: Wonderful, thank you. I hope our readers check out your amazing site and stay tuned with all that you’re doing. Before we let you go, Dina, I’d love for you to share any pearls of wisdom you may have for our readers. Parent’s you are the ONLY advocate for your child’s health!!!! It doesn’t really matter whether it’s a CHD, cancer, diabetes, WHATEVER!!!!!! What matters is: a child. Your child. Do you know what’s going on? PLEASE familiarize yourself with your child’s vital statistics. HOW WILL YOU KNOW IF YOUR CHILD HAS HIGH BLOOD PRESSURE UNLESS YOU KNOW WHAT THEIR “NORMAL” BLOOD PRESSURE IS???? Did you know that your child’s medical records belong to you? Ask for a copy! Keep a notebook! Store in your back seat/trunk. Take it with you each and every time you take your child to the doctor for a physical, a check-up, etc. Did you know that it costs you ABSOLUTELY no extra money to have the blood pressure checked in both of our child’s arms and legs?

With knowledge comes immense power. Chynna’s Helping Heart…changing the world, one informed parent at a time!!!!!

Thank you so much to Dina for all that she’s done, and continues to do, to raise awareness about ‘invisible’ congenital heart abnormalities. From one Mama of such a child to another, God Bless you and…thank you.