Wednesday, December 31, 2014

Happy New Year!

Dear Heart Friends:

Happy New Year! It's out with the old and in with the new, but before we go, I have so many things to be thankful for and I'm going to share some of those things here.

Hearts Unite the Globe

Hearts Unite the Globe: A Nonprofit Organization for the Congenital Heart Defect Community finally received 501(c)(3) status! That was the best news of 2014 for Baby Hearts Press. Baby Hearts Press has been the key sponsor of Hearts Unite the Globe (or HUG) but it was really starting to drain our small publishing company to continue to fund HUG.

Hearts Unite the Globe has had a rebirth with its new status. The Board is excited by what the new status means for what it can do regarding applying for grants and furthering the mission and vision of the organization.

"Heart to Heart with Anna" was born in late 2013 -- the first radio show completely devoted to the congenital heart defect community. The radio show allowed HUG to move forward with its vision and mission of empowering the congenital heart defect community. While Baby Hearts Press sponsored the first season of the show, a pair of amazing sisters created a fundraiser so the show could continue.

Jessica and Amy Cowin created the fundraiser to continue "Heart to Heart with Anna." Thanks to the generosity of many listeners and donors enough money was raised for the show to continue for another year, if we moved to BlogTalkRadio. 

In the first week of 2015 we will complete the third season of "Heart to Heart with Anna" and take a brief hiatus. Then we'll be back to start Season Four: Stories from the Trenches. It should be an interesting season with stories about many different aspects of living with congenital heart defects.

Baby Hearts Press is hoping to put out at least one new book this year. We'll keep you apprised of how that is going. Thanks for being a follower. Please share this blog with others!

We wish all of you a very Happy New Year!

Friday, September 12, 2014

Baby Hearts Press News

Dear Heart Friends:

Keeping up with social media on the internet is quite a job! I have just created a storefront for Baby Hearts Press on Google+. I still have things I'll need to do to spruce it up, but at least I've started!
I've also learned how to use Buffer to disseminate short messages that I can send to people who are linked to me on Twitter, Facebook, LinkedIn and Google+ and the most exciting part was that I was able to schedule these messages to go out when I want to. This means that I could sit down and come up with my messages today and schedule them for the next week and a half -- all for free! I highly recommend everyone check out Buffer App. It's terrific!

Image courtesy of KiddaiKiddeeStudio at

The last thing I've done this week that is very exciting is that I've created 4 internship positions for the radio show "Heart to Heart with Anna." If you go to the "Heart to Heart with Anna" and look at the Volunteers tab, you can see the 4 job positions that are now open. Now that we are entering our 3rd Season of "Heart to Heart with Anna" we are ready to expand the reach we have established in the congenital heart defect community. Let us know if you'd like to be part of the team!

Saturday, September 6, 2014

Celebrating New Writers!

Dear Heart Friends:

I usually write blogs about topics of interest in the heart world or about what's happening with Baby Hearts Press but today I have to write about 2 authors who play very important roles in my life.

My son, Alexander, who was born with a number of congenital heart defects which culminated in him having the Fontan procedure (and then a revision of that Fontan 16 years later) has written his first book. I am so excited for him! It's still in the editing stages, but it's complete! In fact, it's to be the first in a series of books and he's in the process right now of mapping out the plot for the other books. I'm so honored he allowed me to help with the editing process. We'll attend a Writers' League of Texas workshop later this month that should help him make some decisions regarding what he wants to do with his book regarding publishing.

The other author I'd like to talk about is Mary Black. Mary and I met at a Writers' League of Texas event and we became each others' accountability coaches shortly after that time. Mary is the person who helped me create a whole new website and it was while I was at her house working that I got the phone call that changed the course of my life and turned me into a talk radio show host.

Mary has completed her book, Peyote Fire, and has even set a publication date for later this fall. I'm so excited for her! I'm excited to have been part of the birthing of her book and now she has honored me with one of two proofs she had printed so I can help her with the line editing.

I think one of the most exciting things about being an author and a publisher is that I really know how Alex and Mary feels about completing their manuscripts and preparing for the next step to accomplish their dreams. Once the covers of the books are complete and the books are actually available, I'll let you know!

Friday, August 29, 2014

A Change in Media

My friend, Mary Black, is writing a prehistoric fiction book about a tribe in the Pecos Valley. To me the one thing I've been most fascinated with is the true archeological information that Mary has been privy to (being married to an archeologist has its advantages!) and how Mary has woven that information into her story. Being a lover of stories of all kinds, I especially have found intriguing is the rock art found in that location and the stories that have lasted for generations.

Image courtesy of foto76 at

Over time we've seen the way people transmit information has changed dramatically. In the ancient days communication was through song, dancing and oral language. Then we found evidence of a written word or codes, sculpture, art, architecture and carvings.

Music, art and different global languages have made communication across generations and throughout our world easier to understand and access. Sadly, some languages have died and some will simply never be used again.
Image courtesy of akeeris at

I'm seeing the same thing happening in how communication in just the last 70 years has changed. My father enjoyed telling the family stories about how he and his grandfather used to listen to baseball games on the radio. As a young man he was witness to the first televisions being mass produced. I still remember, as a little girl, when our television would "break" and my father would take the back off of the television set and take some fuses or bulbs out and we'd go to a hardware store or electronics store and Dad would get replacement parts to fix our television. Even though I'm only 51 years old, I actually remember our family getting a color television set! That was so exciting!

Image courtesy of koratmember at

Another huge change in communication was from the written word going from being hand-lettered, to produced with movable type (the first printing presses) -- which were both labor intensive and very expensive -- to the first typewriters (manual), then electric typewriters (I had a Brother typewriter given to me as a high school graduation gift which was the envy of most of the girls in my dorm because it had a little strip of white-out which could be used when we typed mistakes!) to the first personal computers (I actually had Apple computers first and then got one of the first Macintosh computers -- which seemed so sophisticated!

When I wrote my first book, I typed it on a Macintosh computer. In fact, all of my books have been produced on Apple products. Aside from the huge change in the size of the computers, the memory and storage capacity, the power of the computers and the portability of the computers, I think the change I have most witnessed is the software that can be used on the computers.

When I wrote my first book, Hypoplastic Left Heart Syndrome: A Handbook for Parents, I produced the book with a word processing program called Appleworks. By the time I put together My Brother Needs an Operation and The Heart of a Mother, I was required to submit the books as PageMaker files. When I did my last book, The Heart of a Father, I sent a PDF file to the printer. I never would have guessed that things would change so quickly!

Image courtesy of stockimages at

Now I'm getting ready to take all of my books into the electronic realm. Just having a PDF isn't good enough. Your book has to be able to be accessed on smart phones, tablets and computers. This requires yet something else -- and that's what I'll be learning about in the coming weeks. I don't expect it to be too difficult, but it will be another thing I have to learn. I'll be using my old Macintosh G4 and its Zip Drive to create a Word Document -- if that's at all possible given the operating system on my Mac and the requirements for CreateSpace and SmashWords.

I'm excited to see how things have changed over time. I can't wait to see what's next! I only hope I'm around long enough to jump in at the beginning and that my grandchildren won't think I'm a dinosaur!

I hope all of my readers have a wonderful Labor Day weekend!

Friday, August 22, 2014

Book News!

Dear Heart Friends:

Season Two of "Heart to Heart with Anna" is about to come to a close. Callie Rickard, my webmaster, radio show newsletter editor and dear friend, and I chose the shows that will be featured as encore presentations while I take a short hiatus from recording the radio show and get geared up for next season and do something I've been wanting to do for a long time.

Image courtesy of ddpavumba at

During the break between Season Two and Season Three I will be converting all of my books to true eBooks. While they are currently available on the website, they are all in PDF format, which isn't easy to read on all e-readers. So my goal during the hiatus is to figure out how to convert all of the books to the true eBook format so they can be read on all e-readers. I've already tried using some programs that take PDFs and convert them to Word documents, but the result was a disaster.

Image thanks to

Instead I will be using my trusty Macintosh G4 to take my Zip disks and convert my Appleworks files to Word files. I will also use that time to totally edit the books. I have correction copies of all of my books, but if any of you have noted mistakes that you've discovered in any of my books, now is the time to let me know!

Another exciting task before me is to finish reading my son's first book! Alexander Jaworski, my son who was born with a single ventricle heart, has completed his first novel. He has selected me to be one of his beta readers. I'm already into chapter 3 and I can't wait to finish the whole book. It's over 200 pages so it might take me a while but I know during my hiatus I'll have some time to work on it.

Lastly, but just as importantly, I'll be line editing my dear friend, Mary Black's, first fiction book! You can read more about Mary's experience with creating her book, Peyote Fire, on her blog. It's a prehistoric fiction novel about a real tribe that was located in the Pecos Valley. I met Mary in November 2012 at a Writer's League of Texas workshop and it wasn't long before we were friends. We are actually much more than friends. We became accountability coaches for one another. We met on a weekly basis and assigned each other "homework" to help us reach our goals. Mary's goal was to finish her book. At the time, my major goal was to revamp the Baby Hearts Press website but in August 2013 I received a phone call, while at Mary's house, that changed my life -- the call from Josh Bernstein suggesting I start  my own talk radio show. I don't know how I would have done as much as I did without Mary.

So as you can see, the next two months should be very interesting. We'll be wrapping up Season Two of "Heart to Heart with Anna" where our theme was "There is Hope!" and we'll be taking a short hiatus to complete some really important projects. I hope you'll check out some of the websites I noted in this blog. Don't forget to send me any corrections to my books for the digital version coming soon!

Friday, August 15, 2014

Lessons Learned in Season Two

Dear Heart Friends:

It's hard to believe that Season Two of "Heart to Heart with Anna" is coming to a close. There are only 3 weeks left in Season Two and then we'll take a little hiatus to do some behind-the-scenes work in preparation for Season Three.

There have been so many lessons learned this season! First of all came the big decision and subsequent move from VoiceAmerica to BlogTalkRadio. This was a difficult decision because I really enjoyed the team I worked with at VoiceAmerica and they really seemed to believe in the show. Jessica and Amy Cowin set up a fund raiser to keep "Heart to Heart with Anna" on VoiceAmerica, but sadly, not enough money was raised to keep the show on VoiceAmerica so we had to say "good-bye."

There were many people who still believed in the show, however, and enough donations were garnered for us to move to BlogTalkRadio. This was a huge undertaking and couldn't have been done without a lot of help from Callie Rickard and many of our Season One Guests.

The move required that I learn something new -- how to use Audacity in order to edit my shows. I had to take out all references to VoiceAmerica and all VoiceAmerica ads. Then I had to learn how to export the show as an MP3 and upload it to my studio. I also had to modify my commercials and my closing music. It sounds simple when I type it out here, but it was anything but simple!

The next requirement was for Callie and me to learn how to use the BlogTalkRadio studio. BlogTalkRadio has some really good tutorials and we were able to learn what to do fairly quickly. Because all of this happened well after the time I had made plans to accompany my husband to a professional conference in Vienna, Callie came to my rescue and aired the first 4 shows for me. She learned how to take callers, open the chat room and she did a great job!

In order to try to get all of Season One moved to BlogTalkRadio as quickly as possible, we aired shows on Tuesdays and Thursdays until all 15 shows were in the Archives. Then it was time to start Season Two.

The theme for Season One was "You are Not Alone" and the theme for Season Two has been "There is Hope!" We've really enjoyed putting together shows that demonstrate how much hope there is for babies born today with a congenital heart defect. There have been some challenges with Guests being unable to make it on the show at the last minute, but our angels have been ever at our side and amazing Guests seemed to always be waiting in the wings.

Callie created a brand new logo for Season Two -- which involved the entire heart community! She came up with a lot of logos and I picked my favorites and then we posted them on Facebook. Members of the heart community voted and talked about why they liked certain logos more than others. It was interesting to see how some logos affected people. I loved them all so I was happy to let my Listeners choose the logo!

I'm not sure if we're going to change the logo again. I'd like to know what my Listeners and Guests think about having a new logo for each Season. The theme for Season Three is "Finding Your Voice" and I'm really excited about what kind of shows we can have based on that theme. Please write to me at if you would like to suggest a show or offer to be a Guest. You can also fill out the form on the website (go to the tab "Be on the Show"). Right now we are looking at having some authors, a music therapist and parents of adults with CHDs talking about how they had to find their voices again after their children grew up. Those are just a few of the topics we'll be covering!

Did you know that you could "find your voice" with "Heart to Heart with Anna" in a variety of ways? First of all, you can request being a Guest on our show! The second way you can find your voice is by submitting an article for our newsletter. The third way to find your voice is to offer to be a Guest Blogger or by writing a comment on our blog. There are so many ways you can find your voice with "Heart to Heart with Anna"!

Image courtesy of adamr at

Friday, August 8, 2014

Back to School?

Usually the end of summer -- with Labor Day looming in the distance -- signifies one thing to parents and children -- it's back to school time!

While many children look forward to being back in school, getting new school supplies and some new clothes, there are some children who are not so excited. These are the children who have been bullied and who fear the bullying will begin all over again when they go back to school.

Many parents of children with congenital heart defects have had the heartbreaking occurrence of bullying of their heart children. Sometimes the bullying occurs because the child looks small, can't keep up with the other children, requires extra equipment or extra time to do things, get special treatment (like not having to run laps with the rest of the class or a key to the elevator) and these things can be fodder for bullies. What is a parent to do?

On "Heart to Heart with Anna" we will be discussing bullying and how to make our school environments safe for our congenital heart defect (CHD) survivors. There are things parents can do, and should do, to make sure their children are safe in school and to help prevent teasing or bullying.

There are other considerations heart families must make when it comes to sending a CHD survivor back to school. Is the child current on his/her immunizations? Has an individualized education plan (IEP) been established for the child if the child is behind his/her peers? If the child is 0-3, does he/she qualify for early childhood education? Who should know about the child's heart defect? What kind of information should be provided to the school? Should the child wear some kind of identification that alerts people to the CHD condition? Should the parents plan to meet with their survivor's classmates to talk to them about their child? At what age is that appropriate? When should those kind of parent advocacy events stop? When should the CHD survivor be his/her own advocate? How do parents teach their children to be advocates for themselves?

These are just a few of the considerations that families of CHD survivors should consider when preparing to go back to school. Go to Heart to Heart with Anna to hear the radio show about this topic.
A great article with tips for teachers, parents and students can be found here.

Education is empowering. When parents, teachers and CHD survivors work together to ensure everyone understands the needs of the CHD survivor, everyone wins. That's a cause for celebration!

Back-to-School Image courtesy of nuttakit /
Cheerful School Boy Showing His Thumbs Up Image courtesy of photostock /

Thursday, July 31, 2014

Toastmasters Petition

Dear Heart Friends:

I'm about to let you in on a secret. I'm an introvert. Shhh!

It's true. I was a painfully shy person until I was in my 30s. What brought me out of my shell? Two things: having children and becoming a writer. What made me feel confident that I could speak in front of others and that I had a message worth sharing? Toastmasters.

Toastmasters has been a vital part of my life for the last 13 years. For most of that time I was raising a young family and I was also a homeschool mom. That meant that once a week I took my two sons with me (we started when they were 6 and 9 years old) and they sat quietly while I learned the intricacies of public speaking. They were little sponges who soaked up everything I was learning and then some! They were my first evaluators as they listened to me practicing my speeches. They were my audience. They were my encouragers.

There is a situation occurring right now in Toastmasters, my beloved organization, which needs to be rectified. Currently there is an outdated and inefficient means of giving officers credit for attending a mandatory training every 6 months. I am recommending a new way of giving credit to officers which also gives every officer credit, regardless where they receive (or give -- since many of us are trainers) that training. It only seems fair that if 200 Toastmasters receive credit for attending a particular training because they went to a local training, that if they are joined by someone from a different district -- who is also part of Toastmasters International, that they should get credit, too. Unfortunately, while that is usually the case, it isn't always the case.

Please look at this petition to decide if you would like to support my suggestion. I believe it could help streamline the process needed to give officers credit and it would also show equal respect for any district-sponsored Toastmasters Leadership Institute.

I have benefited greatly from Toastmasters -- it's what enables me to conduct my radio show and to speak to groups all over North America. Without the training and the practice I receive at my Toastmasters weekly meetings, I am certain I would revert back to being more introverted and self-conscious when speaking in public. Because of Toastmasters, I have developed confidence and can focus on the message I am trying to convey instead of the art of speaking itself. Thank you all for your consideration and for sharing this with others.

Friday, July 18, 2014

Revitalization of the Baby Hearts Press Website!

Dear Heart Friends:

What is one of the most difficult things to do once a website is created? 

I just thought website creation was difficult. Luckily for me, I had many kind people helping me out with the website creation -- provided I could supply them with content. It was extremely difficult to decide what to put on the website, what to leave out and how to spruce things up. As time went on we played with different kinds and colors of backgrounds, different images and even fun images that spun around or would have some kind of animation.

What was one of the most difficult things to do? Change! It took months of work to built the website in the first place. Why in the world would we want to change things?

Change is inevitable. It seems that once a website is built, it becomes obsolete. It's already time to be thinking about how to improve content, add images and move things around. Websites can become unwieldy because of this need to always change: to add, to improve and to enhance. Then the change deals with new ways to format the website. It seems that websites have a life of their own.

Baby Hearts Press has been going through a lot of changes. Our long-time webmaster and friend, Sue Dove, decided to take a break from working on the website. With her children grown and gone, it was time for her to enjoy a new chapter in her life. Callie Rickard then joined our mission to provide resources to the CHD community and with her came new ideas, new skills and . . . you guessed it -- CHANGE!

Please check out what Callie has done to the Baby Hearts Press website. It now features something new -- an ability to "Take a Peek" inside our books! Some of the books have book trailers -- short videos where you learn more about the book. You can read book reviews and even see the Table of Contents for the books.

Callie also has information about the radio show that is available to inspire and uplift the CHD community. "Heart to Heart with Anna" is hosted by the owner of Baby Hearts Press, Anna Jaworski. The Baby Hearts Press website is a place for people to discover other resources (in various modalities) for the CHD community.

We hope you like the new website! Please share it with others. Please give us feedback, too! We love to know what our readers or listeners think and what they want to know more about.

Sunday, July 13, 2014

Empowering Through Educating with Technology

Eighteen years ago, when the Internet was first delivered to my home via a dial-up connection, there was not much information available for families of children with congenital heart defects. Many of the sites were memorials to heart warriors who left earth too soon and there wasn't much hope for families or much information written for the common person to understand what was going on and how to deal with it.

I started my website and then in order to fill a need for information specifically for parents and then later for the survivors of congenital heart defects. I wanted to paint a picture of hope for members of the congenital heart defect community. With my background in education, I felt an obligation to teach and empower members of my community through the written word.

Just this last week, a fellow heart mom and friend, Callie Rickard, shared some news with me. She told me about a mobile app that is designed to help parents understand what some heart defects look like and what must be done to repair those funky hearts.

Cincinnati Children's Hospital Medical Center is making the app Heartpedia available for people who have an iPad or iPhone. They even have 3-D images available! Currently 7 congenital heart defects are mentioned:

• Tetralogy of Fallot

• Coarctation of the Aorta

• Hypoplastic Left Heart Syndrome

• Transposition of the Great Arteries

• Ventricular Septal Defect

• Patent Ductus Arteriosus

• Atrioventricular Septal Defect

You'll have the ability to toggle your way between a normal heart and the heart with the congenital heart defect, as well as having the ability to read about the heart defect, view various slides explaining the heart defect and watch video animation that describes the heart defect and the surgeries commonly used to repair or palliate (reduce the severity of) the heart defect.

The best part about this is that it's free!

Friday, June 27, 2014

A Win-Win Situation

Dear Heart Friends:

This last week "Heart to Heart with Anna" dealt with Sports and Boys with Critical Congenital Heart Defects. We had two excellent dads of sons with hypoplastic left heart syndrome (HLHS) and an adult with HLHS as our Guests. During the Q & A session at the end of the show another HLHS adult and his father called in. It was a terrific show.

It seems that the news is full of discussion about people with congenital heart defects. There was the inspiring story of Hampton goalie Cameron Raidna set to return to the ice after heart surgery, the tearful story of a mom encouraging heart screening for athletes after her son's sudden death, the joyful story of a Briarcrest athlete whosurvived a potentially deadly heart defect who just graduated but the story that has really caught my attention is about an athlete who goes to college just down the road from me at Baylor University. 

It all started with an article about Isaiah Austin when a medical condition ended his dream of being a draft prospect for the National Basketball Association (NBA). I was heartbroken to read that he was diagnosed with Marfan's Syndrome and that his aorta was to weak to continue his dream. He seemed so talented an he had already overcome so much already! During his last season with the Baylor Bears he revealed that he had a prosthetic right eye after multiple operations couldn't repair a detached retina. The eye had been damaged when a previous injury was aggravated doing a routine dunk before a middle school game. 

After the news of his career-ending medical condition came out, he was very forthright and encouraging of his teammates instead of wallowing in his own disappointment. What totally delighted me was this story I read last night about what the NBA did to Isaiah Austin. They honored him during the draft when Commission Adam Silver announced between the 15th and 16th draft picks that the NBA picked Isaiah Austin.  

It was a dream-come-true for Isaiah Austin and it's a win for the NBA, too. After finishing the next two years of school at Baylor, he can start working for the NBA or who knows? Maybe he'll coach for Baylor someday. What appears to be a certainty is that this young man will use his God-given talents to help others. He spoke in such an inspiring way in a recent interview that I have no doubt we'll be hearing from this young man again in the future.

It's not everyday you see a win-win situation like the one created when the NBA picked Isaiah Austin. It's not everyday that people are made aware of the danger of congenital heart defects. It's not everyday that people learn about a syndrome that affects 1 in 5000 people. This week marks some special events in one man's life but who knows who he'll inspire and whose life he just might save by making people aware of congenital heart defects and Marfan Syndrome. God Bless you, Isaiah Austin!

Friday, June 20, 2014

Skipping a Beat

What is the number one cardiac arrhythmia? What heart condition affects over 3 million people in Europe alone? What is the fastest growing technique in cardiology?

The answer may surprise you. It isn't about cloning, stem cells or any of the in utero procedures you might think it would be. The condition isn't something that people talk about, yet 5% of the population over 75 suffer from it. That's 5% of all adults. The percentage of adults with congenital heart defects (CHDs) who suffer from this condition is 15% -- three times that of the population at large.

What is it, you may wonder? It's atrial arrhythmias or atrial fibrillation. It's commonly called Afib or AF in the heart world. This arrhythmia is characterized by a rate or rhythm problem with the heart's beat. According to the National Heart, Lung and Blood Institute, "During an arrhythmia, the heart can beat too fast, too slow, or with an irregular rhythm. AF occurs if rapid, disorganized electrical signals cause the heart's two upper chambers -- called the atria -- to fibrillate. The term "fibrillate" means to contract very fast and irregularly."

Why is this important and why should people in the heart world care about this situation? The reason is that people with undiagnosed Afib are at a much greater risk for stroke and heart failure than those who know they have Afib and are under a doctor's care for treatment of Afib.

This is especially important for the aging congenital heart defect population. According to Circulation, those born with CHDs have a much greater likelihood of developing Afib as they age. In fact, certain heart defects such as: Ebstein anaomaly, transposition complex (transposition of the great vessels also known as transposition of the great arteries), univentricular heart (which include but are not limited to: hypoplastic left heart syndrome, single ventricle, double-inlet left ventricle, double-inlet right ventricle, mitral or tricuspid atresia or single ventricle heterotaxy syndrome), and atrial septal defects have an even higher percentage of Afib associated with them as survivors of these congenital heart defects age.

Last week we talked about the concern of losing adults with congenital heart defects to follow-up care and this is one of the reasons why maintaining regular cardiology visits is so important. When people are born with congenital heart defects, they may have arrhythmias for all or most of their lives. If they are like my son, they don't feel these arrhythmias as being unique, special or worrisome. It's the way their heart has always beat. Because of that, unless they are suddenly experiencing fainting, an usually fast or slow heartbeat (for them) or sudden weakness, they may not even know they are suffering from Afib at all. For many people, they have no symptoms. I have watched my son's electrocardiogram being done on him and have watched the arrhythmias being documented on paper while my son tells his cardiologist that everything is fine. This is what is the most concerning part about Afib. For many there are no symptoms. For some, that can be life-threatening.

What's really exciting is that according to News Medical, atrial fibrillation ablation is one of the fastest growing cardiology techniques. According to this article, there are two different ways to treat Afib. One way is with anti-arrhythmia drugs (AAD) and the other way to treat the problem is through catheter ablation of atrial fibrillation. However, I know of another technique that is being used -- and it's one that I hope will save my son from future problems with Afib. The other procedure I know about is called the Maze Procedure. According to WebMD, the Maze Procedure is a surgical treatment for Afib and is also known as surgical ablation. My son had this procedure while having a Fontan revision. Since his chest was open already and he had known Afib issues, the surgeon decided to do a modified Maze Procedure on his heart to stave off future arrhythmias.

I think it's exciting to note that doctors are learning ways to prevent arrhythmias through catheterization techniques because these techniques usually result in shorter hospital stays, less chance for infection and thus less complications. It's gratifying to see that many of our children with congenital heart defects are being followed into adulthood and that doctors are trying to find ways to keep our children healthy into and throughout their adulthood. Preventing life-threatening arrhythmias is one of the ways doctors can ensure our adults with CHDs continue to live quality lives.

According to the News Medical article mentioned, "It is estimated that more than 10,000 atrial fibrillation ablation procedures are performed annually in Europe and the number is increasing exponentially since over the last years availability of more sophisticated techniques and equipment has produced a marked increase in the number of centers performing atrial fibrillation ablation. Three dimensional mapping systems, robotic techniques, new energy sources and new and more reliable catheters are easing the procedure and improving efficacy and safety." Catheter ablation plus surgical ablation are two invasive ways of saving adults' lives from fatal or near-fatal arrhythmias. Parents in the heart world know that our lives can change in a heartbeat. It's nice to know that doctors can make sure that our children's heartbeats can continue to stay regular despite their funky hearts.

Sunday, June 15, 2014

Adults with Congenital Heart Defects Lost to Care?

Once upon a time, there were more babies alive with congenital heart defects than adults because babies and children often passed away before they became adults. In 2008 there was a special report published in Circulation, the journal of the American Heart Association, that stated that adults with congenital heart defects outnumbered the number of babies with congenital heart defects. Apparently, that milestone was reached as early as 2000. An article in Heart: An International Peer-Reviewed Journal for Health Professionals and Researchers in All Areas of Cardiology had an articled entitled, "Loss to Follow-up of Adults with Repaired Congenital Heart Disease" by Christopher Wren and John J O'Sullivan. It stated that by 2000 adults with CHDs outnumbered babies with CHDs for the first time ever. The article addressed the concern doctors had for the increasing population of adults with congenital heart defects and stated that the loss to follow-up care began when survivors were still children.

It is readily apparent that our infants and young children need follow-up care, especially since those children with critical congenital heart defects often have staged surgeries that last for the first years of a child's life. What happens to children after they have completed their staged surgeries? What kinds of concerns do parents have as their children with congenital heart defects age? What happens when a parent's insurance has capped out?

When parents have an infant born with a congenital heart defect they are immediately thrust into a position where it is common for them to go into shock. It is also not uncommon for parents of children to experience post traumatic stress disorder (PTSD). Some parents even find out while the mother is pregnant that the baby will be born with a less-than-perfect heart. This requires parents to make decisions that parents didn't have to make before ultrasounds helped detect problems with unborn babies' hearts. Now parents don't only have to decide where their children should have surgery and who the surgeon should be; now parents are having to decide whether or not their should abort their unborn children. In the past I've actually had fathers call me to ask how much it cost to have a child with a heart defect. With each child's care being so different, of course I couldn't give a figure but I can't help but wonder if that consideration is going to be even more prevalent now that we know that an increasing percentage of our children will make it to adulthood.

The articles I mentioned above along with the 32nd Bethesda Conference: “Care of the Adult With Congenital Heart Disease” address issues of concern from the CHD community at large about a growing population of adults -- adults with congenital heart defects. We cannot afford to lose these special individuals to follow-up care. We need doctors who are trained to deal with adults who don't suffer from acquired heart disease but rather who were born with congenital heart defects and who may appear different from their "typical" patients. There is nothing typical about our adults with CHDs, at least not the ones with critical CHDs (or CCHDs).

Many of our adults were pioneers who helped cardio-thoracic surgeons and pediatric cardiologists to develop new techniques. They were the guinea pigs who tried new medications to see if they would work well enough to allow growth and aging. Because of the brave parents who handed their children over to medical professionals and begged them to do whatever it took to give their children a chance for life, now these professionals know what works and what doesn't work. In adults with CCHDs, that might very well mean that a young surgeon will see an adult who had a surgical technique to save his/her life that was discontinued before the surgeon even entered medical school. This means that doctors today will see an even great variety of adults with CHDs who have had a number of life-savings techniques that aren't even utilized today.

What does this mean for adults with CHDs? I believe the most important thing for adults with CCHDs to know is that they must continue to see their primary care physician and cardiologist on a regular basis. It is only through doctors amassing more data on what happens to these individuals as they age that we can look for trends and patterns. It's heartbreaking to think of an adult with CHDs being brought into the emergency room with something (like a stroke or heart attack) that could have been prevented had they not been lost to follow-up care.

Heart moms and dads, it's imperative that you don't believe that your child is "fixed" if they've had open-heart surgery. Even if the child has had a simple "hole in the heart" repaired, if the operation required the surgeon to open the child's chest, complications from the open-heart surgery may not be seen until years, possibly decades later. The problem is, since so many adults with CHDs are lost to follow-up care, we simply don't know what a "normal" course is for this special population.

Parents, please work with your child's doctors to work on transitioning our children from child to adult with CHDs and from pediatric cardiologist to a cardiologist who specializes in the care of adults with CHDs. If our aging population works together, our adults with CHDs have a much better chance of living the quality of life we parents dreamed they could live when we first handed our babies over to the care of a surgeon.

Friday, June 6, 2014

Special Guests for Heart to Heart with Anna!

Dear Heart Friends:

It is with great joy that I am able to announce two very special Guests for the only talk radio show for the congenital heart defect (CHD) community available every week!

Tuesday, June 10th our topic will be: Failure to Thrive: Oral Aversions and Nutrition. Since so many of our children with CHDs suffer from the diagnosis of "Failure to Thrive" and often have oral aversions or food preferences that makes providing our CHD children with proper nutrition, this is a show you won't want to miss!

I'm pleased and excited to announce that one of our Guests for the show will be Kristi King! Thanks to Callie Rickard, I read a terrific article on the Texas Children's Blog by Kristi King. I loved how she talked about clean eating and healthy living. For our failure-to-thrive children, nutrition is even more complicated than trying to eat "clean." "Healthy living" for our families is not like it is for other families but I know that Kristi King is going to be able to share some insights with our CHD families about how to help our children to make the most out of their nutritional intake.

The other Guest I'm excited about is not currently scheduled for a particular day yet, but I hope to have him scheduled soon! Yesterday I went to a book signing at Books-a-Million for a brand new book called Special Heart by Bret Baier. Bret Baier, as many people know, is the Host of Special Report with Bret Baier on Fox News.  Bret Baier is on a book tour for this book right now and I strongly encourage my heart friends to take the time to buy this book, read it, and if you're lucky enough to be in a town Bret Baier is visiting, to go to the book signing.

"Heart to Heart with Anna" is now on Tuesdays from 11:00 to noon Central Daylight Savings Time on BlogTalkRadio. You can learn more about the show by visiting the "Heart to Heart with Anna" website. If you are interested in being a Guest, please click on "Be On The Show" and fill out the form with your information.

Friday, May 30, 2014

A New Season Brings Growth, Change and a New Home!

Dear Heart Friends:

I'm excited to announce that we have moved over all of the VoiceAmerica radio shows from Season One of "Heart to Heart with Anna" to BlogTalkRadio! :-) It was a big change and what was exciting was that in deleting all the references to VoiceAmerica, we had a little bit of extra time left over so we actually had some of our former Guests call in and add a little bit more information at the end of the show. We also took questions and callers from the Internet so even "old" shows became new again! Go to our Heart to Heart with Anna website to see a listing of all of the Season One shows with direct links to each show.

We learned a lot from Season One of the radio show. One of the things we learned in moving all of the shows over to a new network is that some people prefer a 30-minute show. To accommodate those people, we will be conducting interviews of our Guests for the first 30 minutes of our show and then the last 30 minutes will be Question and Answer time with Callers or people in our chatroom. To be able to chat, people must sign up with BlogTalkRadio. It's free and you don't have to have your own radio show, but you do have to sign up for it. Instead of taping our shows, we'll be doing them live! The great thing about this is that it's very spontaneous and fun. The down side is that sometimes we have technical trouble (like with the very first show of the 2nd Season!) BUT the good thing is that with BlogTalkRadio we have access to our studio around the clock and we can fix mistakes if we need to and then re-broadcast the show.

We have an exciting line-up of new shows and are looking for Expert Guests. Go to the Heart to Heart with Anna website and look on the Be On the Show link to see what our list of topics is for Season Two. There is a simple form to fill out if you are interested in being on the show. The show will usually feature two Guests for the first 30 minutes and then the Q & A session following the formal interview. We have a wide variety of topics that should appeal to most members of the congenital heart defect community.

Callie Rickard, our graphic designer and editor of the Heart to Heart with Anna newsletter (look under the Newsletter link to see former issues) created a new logo for the new season! I love the little boy holding the heart balloon. Special thanks to Dara Glagola for recommending the sunset background. We love the colors and the feel of the new logo for Season Two.

We are now looking for topics for Season Three. If you have any ideas for new show topics, please let us know. We haven't had trouble coming up with topics but we love to see what our Listeners want to hear. We hope that you are as excited about the growth and changes we've seen happening with the radio show as we are!

Thursday, May 1, 2014

Athlete Heart Screenings

I remember the day like it was yesterday. I had been waiting about a week for the appointment. Joey, my heart-healthy son, was having an athlete heart screening.

For years I had been worried that perhaps Joey had a heart defect, too. When I voiced concerns to Joey's pediatrician, he assured me that if Joey had a problem, we would know. He was healthy and he had no reason to recommend in-depth testing for Joey, despite the research I found that had been conducted by Children's Hospital of Philadelphia which showed that first and second degree relatives of children with left-sided heart defects (like my younger son, Alex was born with) had a much greater chance of having undiagnosed congenital heart defects. The research didn't sway him.

When I heard that there was a free athlete heart screening in Waco, I took Joey and we were the first ones there. As we entered the examination room, I explained to the technician that Joey was a state swimmer, but his brother was born with hypoplastic left heart syndrome. I asked them if we could specifically look at Joey's ascending aorta and all of his valves.

The technicians were so kind to me. It was a beautiful echocardiogram -- the most beautiful, textbook perfect echo I'd ever seen. The equipment was brand new and everything was so clear.

I was able to hold back until I reached the car before I burst into tears. Joey tried to reassure me, "Mom! It's okay. I'm fine." But his words couldn't stop the tears. I had been so worried for so long and I didn't even realize how worried I'd been!

What's really wonderful is that a friend shared with me a free young athlete heart screening going on in my home town of Temple, Texas. I even set up a Facebook Event for the screening. Now other families won't have to worry about their heart-healthy children. I only wish this had been available when Joey was younger. It would have saved me needless worry.

As if this isn't wonderful enough, a Toastmaster friend, Kevin McGrath, shared another URL with me that will benefit teens in the Central Texas region. One of Kevin's coworkers and his wife (Jim and Michelle Garcia) started the Championship Hearts Foundation which provides free heart screenings for athletes, marching band, cheer and drill team members -- and any student 14-18 years of age. Unbeknownst to me they've been around for 13 years. I strongly encourage everyone to share this URL and this information with others.

You never know when a heart screening might save a life.

Friday, April 18, 2014

Melody Valve Petition

Dear Heart Friends:

It's time for all of us to work together. Lives are at stake! Signing a simple petition could be the difference between life and death. Are you willing to add your signature?

Many of you in the Heart World know that babies born with bad mitral valves are greatly at risk. To date, many children have benefitted from a special device known as a Melody® valve. This valve has been placed in babies and children in limited numbers because the device is not FDA approved.

This petition would allow for Medtronics, the company that produces the Melody valve® to work with the FDA to create a special valve for babies and children. The original use for the Melody valve® was not for it to be used in children, but the brilliant doctors at Boston Children's Hospital and elsewhere have been modifying the valve to save children's lives.

If the changes were made under ordinary circumstances, then it would take a while for new studies to be conducted and for the valve to be available to the babies and children who need them. This petition requests that the FDA and Medtronic work together to get the device to those who can benefit from them now, and ultimately to obtain humanitarian use approval of the device.

It will only take a minute of your time, but that one minute of time-well-spent could save a life. Will you sign the petition?

Will you share this with others? If so, today you will have done a good deed that could touch countless lives. Thank you!

Tuesday, March 18, 2014

More Changes

Survivors are the people who can adapt and change. They are also the ones who recognize that sometimes when a door closes, a window opens. Sometimes it's so easy to get wrapped up in staring at the shut door that you neglect to appreciate the breeze blowing in the open window. I refuse to let that be me.

For 15 weeks I ran a radio show called "Heart to Heart with Anna" on the VoiceAmerica Health and Wellness channel. It was an hour-long talk radio show and I had Guests ranging from congenital heart defect (CHD) survivors to parents of children with CHDs to nurses and doctors who work with CHD survivors to grandparents of children with CHDs. We had an extremely informative show where we discussed topics such as the genetics of CHDs, organ donation and transplantation, losing a child to a CHD and one show devoted to our theme for Season One entitled "You are Not Alone."

As the show was coming to an end, I reached out again to the 50+ Guests I had had on the show and told them that I hadn't been able to secure sponsors or advertisers. I asked them if they knew anyone who could help us save the show.

Jessica and Amy Cowin stepped forward and set up a fundraiser to try to save the show. Keeping Heart to Heart with Anna Beating was the title they gave to the fundraiser and they explained how we needed the CHD community to pull together to save the radio show. The fundraiser is still going on if anyone would like to donate.

The problem was that I was on a tight schedule with VoiceAmerica. To give me a little more time to raise the money, VoiceAmerica allowed three Encore Presentations and Noel Cipra of VoiceAmerica was even kind enough to run an article about our very last episode in the Voice America PressPass which demonstrated extra support.

Sadly, despite our best efforts, we didn't raise enough money to stay with VoiceAmerica. I had become accustomed to having my own sound engineers, an executive producer I could call upon if I needed to or the the general manager. They were always just a phone call or an email away. I started looking for an alternative. Completely ending the show wasn't the answer.

"Heart to Heart with Anna" has found a new home! You will find Heart to Heart with Anna on BlogTalkRadio and I'm thrilled. It means that I will now be my own engineer, producer and host, but thanks to Jessica and Amy, we have enough money for another year of "Heart to Heart with Anna." 

I'm taking a brief hiatus to learn how to work my studio and to figure out how to bring over all of my shows from VoiceAmerica. Change is difficult. Change is challenging, but change is good. I think that by focusing our energy on how to make our show the best it can be on BlogTalkRadio, it will be a change for the better for everyone!

Special thanks to Callie Rickard, Baby Hearts Press' graphic artist who came up with an entire array of possible logos for our 2nd season. Extra special thanks to the CHD community who came forward and voted for their favorite logo. We had over 160 people vote in about 36 hours and the winner was this precious little boy holding onto the heart-shaped balloon during a sunset. I told everyone that our theme for Season Two is "There is Hope! and one of my heart friends, Prossy Najiuma Amal, said, "New hope as the sun sets." I couldn't have said it better.

Meanwhile, I had the pleasure of being a Guest on Marie Biancuzzo's talk radio show "Born to Be Breastfed" with fellow heart moms, Nancy Sands and Amy Gerrish Bennett. You can listen to the show by going here: Born to Be Breastfed on March 31st at 5:00 p.m. CDT.  Marie Biancuzzo, RN debunks the myths surrounding breastfeeding a CHD baby.

"Heart to Heart with Anna" will begin airing on BlogTalkRadio starting April 1st at 2 p.m. CDT -- no fooling!

Please visit Baby Hearts Press at for resources for the congenital heart defect community.