Heart Month

February is considered Heart Month, or as we Heart Parents like to say, 'Congenital Heart Defect (CHD) Awareness Month!'

What happens in CHD Awareness month? There are so many activities in February! Of course the one thing that united our community many years ago was when we decided to start asking our State Governors to make a proclamation asserting that February 14th is Congenital Heart Defect Awareness DAY. Here's a photo of one signed by Texas Governor Rick Perry in 2010.

It's not uncommon for members of the CHD community to come together to celebrate these proclamations and even have a photo taken with the Governor. Below is a great photo of Children's Sibley Heart Center patients, families and staff at the Georgia State Capitol with Governor Deal for their signing of the proclamation in 2013.

While this is important, what is most important is sharing information, spreading knowledge and, quite possibly, saving a life. Here's a beautiful reminder about how many children are born with heart defects everyday -- from an organization created to help spread awareness of the need for newborn pulse oximetry before babies leave the hospital.

I've written about the importance of newborn screening in another blog, but here is a chance for us to mention it again -- and to possibly save a life.

As much as we Heart Parents like to focus on our children in February, it's really heart month -- and it's for everyone for good reason. When you see how heart problems affect so many Americans, you have to open your heart to doing what you can to raise awareness about ALL heart problems. So that means that we may need to wear red, celebrate someone jumping rope for heart and above all, we need to care about our hearts and stay healthy so we can be here again next year to do it all over again. Happy Heart Month, my Heart Friends!

Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.

Chili's Gives Back

Chili's in Round Rock (near the outlet mall) and Temple, Texas will have a Give Back Night for the Children's Heart Foundation on Tuesday, February 4, 2014. What a great way to start off Congenital Heart Defect Awareness Month!

You must have the flyer with you and give it to your server. You can print it straight from your computer here OR if you send me an email at Anna@babyheartspress.com I can send you a PDF of the flyer.

Notice the time! The Giving Back program begins in time for lunch! From 10:45 a.m. to 11 p.m. Chili's will be giving back by giving the Children's Heart Foundation 15% of the event day sales.

What is The Children's Heart Foundation?  The Children’s Heart Foundation is a 501(c)(3) tax-exempt charitable organization that does not receive any government funding. The goal of the foundation is to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects in children. It was founded in 1996 by Betsy Peterson, who recognized the need for an organization whose sole purpose is to fund this type of research after her 8-year-old son, Sam, died from multiple organ failure brought upon by a sudden heart related collapse.

I believe in The Children's Heart Foundation's mission. I am The Children's Heart Foundation Texas Chapter Vice President. I'll be eating at Chili's on February 4, 2014 -- perhaps for lunch and dinner! Will you join me?

Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.

What's New For Baby Hearts Press in 2014?

Dear Heart Friends:

We are well into January already and 2014 has been a very busy year indeed! What's new for Baby Hearts Press in 2014? So many things!

First of all -- please take a look at our totally revamped and refreshed website! Baby Hearts Press Heart Mom and "Heart to Heart with Anna" Guest, Callie Rickard has become Baby Hearts Press' newest Webmaster and Graphic Designer. It is with a heavy heart that we said "good-bye" to Sue Dove. Sue was our webmaster for over 15 years! Now with both children grown and out of the house, Sue is off on new adventures!

Callie isn't only our webmaster! Callie has set up a CafePress Boutique for "Heart to Heart with Anna" which has so many fun items! You'll want to check it out for fun Congenital Heart Defect Awareness items. The more we can get people to talk about congenital heart defects, the more likely we are to raise awareness and possibly save a life!  Heart to Heart Boutique

And Callie hasn't stopped there, either! Callie is also the Editor of the Heart to Heart with Anna Newsletter! Click the link to read the January Newsletter. If you go to the Heart to Heart with Anna website, you can also read the December Newsletter.

But we not stopping there! If a new website is good, and a CafePress makes everything even better then how about a YouTube presence, too! Wouldn't that be BEST?!  Yes! Now Baby Hearts Press has its own YouTube channel and we currently have TWO Book Trailers on You tube.

The first book trailer was produced by Esther Johnson and Joey Jaworski and is available here:  My Brother Needs an Operation but just today, January 20, 2014, Heart Mom and The Heart of a Mother contributor, Brenda Vignaroli, has created a book trailer for The Heart of a Mother, too.

Of course, perhaps the biggest news is that the pilot season of "Heart to Heart with Anna" is about to come to a close. This radio show especially for the Congenital Heart Defect Community has been a lot of fun to put together. We've covered a wide range of topics (from discovering that we are not alone to talking about the genetics involved in congenital heart defects to organ donation and transplantation to surviving the teen years with a complex CHD and had Guests who are parents, grandparents, siblings, doctors, nurses and a State Senator on the show. The next season should be even better! Please consider patronizing Baby Hearts Press so we can continue to fund this remarkable, one-of-a-kind radio show.

We hope you're enjoying all of the shows. Now you can join in the discussion by taking part in our open forum. Heart to Heart with Anna has a Forum under the Heart to Heart with Anna tab. Go there to leave your comments or questions regarding the shows you've heard.

We have other plans in store for Baby Hearts Press for 2014. Check back with us regularly to see what's new in 2014 for Baby Hearts Press!

Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.

The Evolution of Pacemakers

For over 100 years doctors have been conducting experiments using electricity to stimulate the heart, with various levels of "success." The first pacemaker was implanted in a human in 1958 and although the recipient had to have it replaced many times over the course of his life, the recipient, Arne Larsson (viewed above), outlived both the inventor of the device and the surgeon who implanted the device(s) in his heart!

As many people know, the first company to make an implantable pacemaker was Medtronics. Initially the device was rather large (see photo of the implantable device above in Arne's hand) and it included wires (leads) plus a box that contained controls for the device. I am amazed by the history of the artificial pacemaker and the fact that Medtronics has not rested on its laurels. Constantly revising and improving their devices, they have now come up with something so remarkable, it seems like science fiction!

What is science fact, though, is that Medtronics has recently unveiled the world's smallest pacemaker yet! At one-tenth the size of a regular pacemaker, this device is tiny but its size is not the only feature that sets this pacemaker apart from the pacemakers of yesteryear. What makes this device so unique is that it doesn't require any wires (or leads)! This means there is one less potential complication for pacemaker recipients to have to worry about! The device is introduced directly into the heart via a catheter inserted through the femoral artery, which should reduce the opportunity for infections and result in a shorter, less complicated hospital stay.

This device is known as the Micra and in the photo above, you can see what it would look like inside a human heart. This is totally amazing! It is currently being tested in Austria.

For more information, read Medtronic's press release: Medtronic's Smallest Pacemaker

Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.

Ghost Body Parts?

Dear Heart Friends:

When I saw the film that talked about developing ghost body parts, but most specifically, ghost hearts, I became very excited! What the scientific community can now do to strip the cells away from an organ and then implant cells from an organ recipient, in order to "grow" them a fully functional organ with their own native tissue so the organ will be completely accepted by the body without the need for immunosuppressant drugs is something out of the annals of science fiction -- and yet it's not. It is actually happening today.

Please go to this link:
http://www.cleveland.com/healthfit/index.ssf/2012/08/ghost_heart_a_framework_for_gr.html
to read more about the research being done. On this page there is also a short PBS video (less than 15 minutes) which shows how the scientist created the method of cleaning the donated organ and then implanting the cells from the organ recipient. It is unbelievable. Perhaps the most amazing thing was watching a beating heart in a jar. Amazing.

It is science like this that needs support because with advances like this in science, we could save scores of lives. There are so many people waiting for organs every day who die waiting. If we could use this kind of science -- replication of single organs instead of cloning entire bodies -- then people need not die awaiting a heart. As if that news isn't good enough, it gets even better. In addition to not dying while waiting for a heart, the recipients won't need the strong drugs that are currently needed by organ recipients and there will not be a need for re-transplantation.

The hope that science like this provides is immeasurable. It isn't science fiction. It's science fact and it's magnificent!

Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.

One Month Anniversary

December 12, 2013 is the one month anniversary of Heart to Heart with Anna: An Internet Talk Radio Show for the Congenital Heart Defect Community! It hard to believe we've broadcast five shows already! What's even more amazing is that we have such fabulous Guests lined up for next month's shows!

Thanks to Callie Rickard, Heart to Heart with Anna radio show will now have a newsletter to accompany the show! We will be posting the newsletter at the www.hearttoheartwithanna.com website. The newsletter will feature a book review, teasers for upcoming shows and other pertinent news for Heart to Heart with Anna Listeners.

The radio show is Baby Hearts Press' community outreach program. We have worked very hard to make the topics pertinent to the Congenital Heart Defect Community. Please feel free to leave comments on this blog about topics you've enjoyed, would like to hear more of or new topics we haven't discussed yet. We love getting feedback from all of you. It helps us make our show even better.

Happy Holidays, my dear heart friends.

Sincerely,

Anna Jaworski

Owner of Baby Hearts Press (www.babyheartspress.com)

Children's Heart Foundation-Texas Chapter Vice President

Adult Congenital Heart Association - Member

Heart to Heart with Anna -- VoiceAmerica Internet Talk Radio show:  http://www.voiceamerica.com/show/2259/heart-to-heart-with-anna

To receive an eCard for Anna's new radio show, go here:  http://eepurl.com/Ietez

Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.

Prevalence of CHD is Higher than You Think!

Dear Heart Friends:

I am learning a great deal from hosting "Heart to Heart with Anna." I am doing research such as I haven't done since trying to find answers for a friend or doing research for a book. Now the research is to help me ask intelligent questions of my Guests, especially my Expert Guests and to make sure that I am providing the best show possible for my listeners.

So imagine my surprise when I discovered that something that has been taken for granted for almost a decade is wrong, wrong, wrong. It felt like a betrayal, but worse than that, it makes me wonder "why?" and if maybe I can shed some light on a situation that might help the scientific community get more funding for congenital heart defects.

For years we've been saying that 1 in 100 children are born with a congenital heart defect. Oh, there was some dispute but for the most part people believed that heart defects, the most common birth defect, occurred in 1 in 100 babies.

Now I know that's not true.

Dr. D. Woodrow Benson, an Expert Guest on "Heart to Heart with Anna," was one of the key investigators in a study published in 2007 in Circulation that discussed the Genetic Basis for Congenital Heart Defects: Current Knowledge. Circulation 2007; 115 3015-3038. The amazing thing about this article is that on the very first page of the paper the authors stated that ". . . the genetic contribution to CHD has been significantly underestimated in the past." Under Prevalence of CHD I was shocked to discover that ". . . it is estimated that 4 to 10 liveborn infants per 1000 have a cardiac malformation, 40% of which are diagnosed in the first year of life. The true prevalence, however, may be much higher."

Here's what surprised me most, my friends. The article continues with, ". . . For example, bicuspid aortic valve, the most common cardiac malformation, is usually excluded from this estimate. Bicuspid aortic valve is associated with considerable morbidity and mortality later in life and by itself occurs in 10 to 20 per 1000 in the general population. . . " (Bold-facing added in this blog for emphasis by me.)

What?!? The article was published in Circulation -- a scientific journal published by the American Heart Association but the American Heart Association doesn't count bicuspid aortic valve? That article was published in 2007 and yet even today, December 2013, the American Heart Association still doesn't even mention bicuspid aortic valve on the list of common congenital heart defects. American Heart Association: About Congenital Heart Defects

Here's the weird thing -- I belong to a group on Facebook called Heart Mamas and we recently decided to take part in a special project. One mama said she wanted to make ornaments for her Christmas tree and she wanted the ornaments to have our children's name, heart defects, birth dates and locations. I was stunned to see how many mothers listed BAV (bicuspid aortic valve). These mothers knew that bicuspid aortic valves were congenital heart defects . . . why aren't these defects counted in with all of the other congenital heart defects? This would make the percentage of congenital heart defects in the general population FIVE TIMES HIGHER than what we believe the percentage is.

Heart friends, it's time for us to stand up and ask the AHA why they aren't counting BAV and why more dollars aren't being spent to combat congenital heart defects. Heart defects are the number one birth defect. Let's do something to eradicate congenital heart defects - including bicuspid aortic valves!

Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.