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!