Tuesday, December 17, 2013

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.

Thursday, December 12, 2013

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.

Monday, December 2, 2013

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.

Thursday, November 28, 2013

Feeling Thankful

Dear Heart Friends:

On this Thanksgiving Day I have so much to be thankful for. I am thankful that my "heart" son is alive and well. I am thankful that my heart-healthy son is also doing well and coming home for Thanksgiving. I am thankful to be married to the most wonderful man in the world. I am very thankful that my family is getting together for the holiday, even though we will miss Alex.

Regarding Baby Hearts Press . . . I am thankful that I met Mary Black at a marketing workshop put on by the Writers' League of Texas a little over a year ago. She has changed my life. We came together to learn about marketing but what we learned was that there was too much to learn in a one-day class so we decided to meet on a weekly basis to help each other toward our goals. Mary has written the first draft of her book Peyote Fire and I have made a website and started a weekly talk radio show!

I am thankful for my heart friends -- old and new. This year in our travels Frank and I had the great pleasure of meeting with a number of heart friends in cities around North America. It was fun to share food, thoughts, memories and sometimes a few tears. Best of all it was fun sharing hugs and the knowledge that our deep friendships stand the test of time.

I am thankful for science and technology that has allowed so many of my family members to live longer and have a better quality of life. Cancer reared its ugly head in two of our family members but thanks to great treatments available, we'll be spending Thanksgiving with both of them. It is obvious that many of my dear heart friends wouldn't be with me today, or wouldn't have their loved ones with them, without the medical care available in today's day and age.

I am thankful for my country. I live in the United States and feel so thankful to be a citizen of the greatest country in the world. We have our problems, but dreams can still come true here. It is still the land of opportunity and I can't imagine living anywhere else. Of course I also feel blessed to be a Texan. My state is full of beauty and wonder but best of all, my state is full of sunshine and some of the kindest people anywhere.

I hope all of you have a lovely Thanksgiving today and for all of my heart friends who won't be celebrating Thanksgiving Day, like we Americans will, I hope you'll take just a moment to think about how many things you have to be thankful for.

Namaste.

Anna Jaworski




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

Monday, November 18, 2013

The Generosity of the Heart World


Sometimes you read a story and it touches your heart so deeply that you simply have to applaud the author and thank the publisher for letting the story come to light. That is certainly the case with Nick Malawskey's beautifully told story that features the Samaritan's Purse®. 4-Year Old Ugandan Boy Spared Death Thanks to Samaritan's Purse®. The most amazing thing is that the title of the piece is misleading because Samaritan's Purse® didn't just save one boy in this story -- they saved two.

I love articles which demonstrate the generosity of the Heart World. The community I belong to, simply because my son was born with a congenital heart defect, is like no other I know. The Heart World knows no boundaries. Doctors, nurses, physicians, survivors, angels, parents, grandparents, siblings, neighbors, authors, friends . . . the members of the Heart World are practically limitless, especially when you come to realize that heart defects are the Number One birth defect and that 1 in 100 children are affected by this birth defect around the globe.


Today I am going to highlight yet another special organization that helps children who would be lost if it weren't for the generosity of members of the Heart World. International Children's Heart Foundation is another organization that should be applauded for the amazing work they do. Charity Navigator gives this organization a remarkable overall score of 64.84 out of 70 -- making it one of the best charities I've seen regarding transparency and fiduciary care of contributions.

Perhaps one of the best parts of the ICHF, from the reading I have done, is their desire to train others in their own communities -- essentially putting the ICHF out of a job! But seriously, with the long waiting list of children needing help across the globe, there is scant chance this charity is going to disappear overnight. Still, I like the fact that they are training others to care for children with congenital heart defects and that they recognize that the Heart World spans the globe.

Interested in helping out? Medical Mission Trips are listed here. Of course the organization can use financial donations, too. Do you have the heart to help this organization?




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

Monday, November 11, 2013

Baby Hearts Press Sponsors New CHD Radio Show!



Dear Heart Friends:

Tomorrow marks an historic day for Baby Hearts Press. For years Baby Hearts Press has prided itself on providing books and materials specifically for the congenital heart defect (CHD) community. When Baby Hearts Press first launched, back in 1997, the main way people got their information was from books and magazines. Shortly after that we started getting information via computers and then from the Internet!


At the time Baby Hearts Press was the only publishing company specifically for the congenital heart defect community. We wanted to provide messages of hope to others who had children or grandchildren with congenital heart defects. To our delight, it didn't take long before we also saw an increase in the number of children being born with congenital heart defects living to adulthood! Baby Hearts Press sought to serve this group of people, too, especially with books like The Heart of a Mother and The Heart of a Father.



Everything has changed today.  No longer do people rush to the library when they need information. Now people look on their computers, their tablets or their smart phones. More and more people are choosing to read "books" on their Kindle, Nook or other e-reading device. Audiobooks are more common than ever before and many people also choose to get their information from audiobooks or other sources that use audio as a platform.

With all of these changes in technology, it only seemed logical that Baby Hearts Press would change, too. Our latest venture is to move into radio! Not just any radio, but Internet radio with VoiceAmerica!


Consequently, tomorrow -- 11-12-13 -- Baby Hearts Press' new radio show -- Heart to Heart with Anna debuts! The topic of the first show is "You Are Not Alone" and features the following Guests:  Nancy and Jesse McCain [grandparents to Samantha McCain (HLHS)], Callie Rickard [mom to DJ (HLHS)] and adult survivor Carl Wolford (TAPVR).

If you would like to receive an eCard to the radio show, please go to this link:  http://eepurl.com/Ietez and fill in your name and email address.

We hope our readers will tune in to the show and enjoy hearing from others in the CHD community. You are Not Alone and through this radio show, we can all come closer together, share our stories and become empowered advocates in the CHD community.



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

Monday, November 4, 2013

Raising Awareness: Horseback Riding for a Reason



Dear Heart Friends:

Imagine 1200 horses and riders all coming together for a cause -- heart disease. Imagine you are amongst those 1200 riders, but you are only 12 months old and the reason you are there is not to support Grandpa, but rather yourself. You are there because twelve months prior you were in a surgical operating room and your parents and grandparents were waiting for a miracle to happen. They were waiting for a surgeon to operate on your walnut-sized heart to save your life.

This was the case for little Noah (Riding Horses to Support Heart Disease). The title of the article I read was a bit misleading:  Riding Horse to Support Heart Disease -- they aren't really supporting heart disease, but rather riding horses to raise money for the American Heart Association which does a great deal to fund research related to heart disease.

What surprised me a good deal about this article was that it was the 32nd Annual American Heart Association Beach Ride. This ride probably started out to help people with acquired heart disease, but I found it heartwarming to read about how a family with congenital heart disease took part (and over a dozen of their friends) to raise awareness of how heart disease does not only affect the elderly -- but even tiny, newborn infants.


There are some members of the congenital heart defect community who don't support the American Heart Association because only pennies of every dollar they raise actually goes toward congenital heart defect research; however, they raise so much money per year (the fundraiser described above raised more than $250,000 alone!) that the amount of money they contribute to research regarding congenital heart defects is significant and shouldn't be taken for granted. In an article in the monthly publication Circulation (Circulation October 29, 2013) the new President of the AHA, Jan Breslow, MD, addresses why everyone should support the AHA.

He talks about the underfunding by the United States government of research related to heart disease and stroke. He also specifically addresses congenital heart disease because the AHA is addressing the development, biologically, of the heart. While that research may not help people like my son, who is a young adult with congenital heart disease, they are right to try to determine the cause of congenital heart defects so we can prevent people from being born with defective hearts. If we could prevent hearts from developing problems in utero, or discover means to help a developing heart to grow correctly, many of us "heart parents" would be relieved of ever having to hand our babies, like Noah, off to a surgeon just days after birth.

I encourage all of us in the heart world to work together to raise awareness of heart disease -- whether it's acquired or congenital, to fund research for answers to the many questions we have to be united. We will gain so much more by being united!




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

Monday, October 28, 2013

Human Guinea Pigs OR Helpful Pioneers?





I never have liked the term "guinea pig" when referring to human beings. To make matters worse, it is usually used in a negative way and has a negative connotation. Whether we like the term or not, the term "guinea pig" simply means "somebody or something experimented on: somebody or something used as the subject of an experiment, test, or trial" according to the Bing dictionary. It really doesn't have to be considered something negative; however, I would like to recommend that instead of using the term "guinea pig" instead we use the term "helpful pioneers"!



Pioneers paved the way for others to live a better life. They endured hardships to prevent future generations from having to do likewise. Pioneers were brave and faced uncertain futures. Don't you think that is a more fitting description of the good-hearted souls who take part in clinical studies to progress our current knowledge of whatever subject is being studied?

Today I'd like to discuss how our children and/or teens and/or adults born with congenital heart defects can become helpful pioneers and help the medical profession learn more about what it means to have a congenital heart defect. Since so many babies and children died before reaching the teenage years (much less adulthood!) there is little normative data on individuals growing up with congenital heart defects. 

I found a terrific site that lists the different research projects that are going on by state (for those of you readers who live in the United States)! Here is the link: Clinical Trials Involving Congenital Heart Defects

We have an aging congenital heart defect population. In order for current and future generations to know what to anticipate, we must have research conducted to determine what is "normal" and what the range of "normal" might be. Gaining this knowledge is one way we can better prepare for the future and try to prevent the anxiety that accompanies not knowing what we are facing. It is not knowing and wondering if what is happening to your child is commonly happening to other children that makes parents so anxious. The same is true once our children grow up and start experiencing certain symptoms. Knowing that others with their same diagnosis commonly share their experiences makes people feel less alone and afraid. Learning what to do when certain symptoms appear, empowers our CHD survivors to be better advocates for themselves and helps them make better choices for optimal care. 

If you don't see a clinical trial you would like to participate in, why not share the information with others you know who could be helpful pioneers?




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

Monday, October 21, 2013

A New Direction for Baby Hearts Press



Dear Heart Friends:

What has Baby Hearts Press (a.k.a. Anna and Frank Jaworski) been doing for the last decade and a half? We've been publishing books and resources for the congenital heart defect (CHD) community. When the Internet was young in the early 1990s, almost everything we found online about children with congenital heart defects were created by bereaved parents. There were many tributes to heart warriors taken too soon. There wasn't much information online that provided hope to the CHD community.

What was worse was that publishers considered our community "too small" or "niche market" and thus they weren't interested in publishing books to help our community, although they wished us luck and directed us to other publishers who also turned us down. That's how Baby Hearts Press was born. We found a book on self-publishing, started Baby Hearts Press and haven't looked back since. For a long time our books were among the few books that gave parents information on a level just about anyone with a high school education could read and understand, but more importantly, the books provided real stories that hadn't been "Hollywood-ized" and instead were told by real people affected by CHDs in their own words -- the words of grandparents, parents and adult survivors.

Now everything has changed. The world is much faster paced. There are many, many pages of hope on the Internet for CHD families, supporters and survivors. Hospitals provide all kinds of information for the CHD community, some even provide videos or beautiful 3-D graphics which help to explain heart defects which seemed incomprehensible before. Big publishers have started taking notice of our growing community and there are textbooks and other books that are now available which paint a picture of hope for everyone.

Our son, Alexander, has also grown up. So we found ourselves at a crossroads and then we received a phone call that would change our lives. The call was from Josh Bernstein, an Executive Producer with VoiceAmerica. After having seen Anna's websites on the Internet, he called to offer Anna her own radio show -- a show specifically for the CHD community. This would be a chance for us to continue our community outreach and it would also be an opportunity to share our books with the CHD community.

Anna just got back from Phoenix, Arizona where she met her VoiceAmerica team! Here is a photo of her with Josh and Brandy Jackson, General Manager of Voice America.


Unfortunately, Anna didn't get photos with all of the members of her team, but here is her Trainer and Sound Engineer for Episode 2 and 3. The Trainer was Randy Jackman and his brother, Justin was Anna's Sound Engineer.
Justin, Anna and Randy

Perhaps the most exciting part of the trip, aside from meeting all of the wonderful people who make VoiceAmerica what it is, was the fact that Anna actually taped the first 3 Episodes of Heart to Heart with Anna. Here is a photo of Anna in the studio after her first Episode was complete.


Thanks to the generous support of the CHD community, Anna had 12 Guests on the first 3 shows which will begin airing on Tuesday, November 12, 2013 at 2:00 p.m. Central Time. The first three Episodes and Guests are:

Episode #1: You Are Not Alone with Guests: Nancy and Jesse McCain, Callie Rickard and Carl Wolford

Episode #2: Post Traumatic Stress Disorder, Anxiety and Survivor's Guilt in the CHD Community with Guests:  Lauren Bednarz, Yasmin Southwood and Bryce Bagwill

Episode #3: Organ Donation and Transplantation with Guests: Eileen Pearlman, Jessica Cowin, Emily Wiebke, Kathy Keller and Anthony Pugliese

All of the Guests did an excellent job of providing information and sharing their experiences with the listening audience. Here's how powerful their stories were -- after Episode #1 was completed one of the VoiceAmerica employees found Anna eating some soup in the kitchen and proceeded to tell her that he'd heard about the show we'd just completed. He went on to share that his niece was born with a serious heart defect and needed surgery in her first days of life. He couldn't wait to tell his brother about the show because he wanted him to know that he was not alone.

We haven't even aired but we have already touched someone's life. Now you see the new direction Baby Hearts Press is taking. We hope you'll join us! Please LIKE us on Facebook!  Heart to Heart with Anna  If you'd like to receive an eCard about the show, please send Anna an email at Anna@BabyHeartsPress.com and give her your preferred email address.

We are looking forward to hearing from you all soon!

(The front door of VoiceAmerica, a.k.a. World Talk Radio)




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

Wednesday, October 9, 2013

Who Needs Prophylaxis Antibiotics Anyway?


When a mother and father are given the news that their baby has a severe, congenital heart defect (CHD), they are given a lot of information that needs to be discussed again and again as the child ages. One of the areas that my son's cardiologists have been good at reviewing with us has been the need for taking medication in anticipation of dental procedures -- which is known as prophylaxis antibiotics by the doctors.

What are doctors worried about? A horrible, possibly life-threatening condition known as "infective endocarditis" is an infection of the endocardium (heart muscle) that usually involves the valves and adjacent structures and is caused by a wide variety of bacteria and fungi. Although infectious disease clinicians may be familiar with this disease, general internists may not have much exposure to this condition, therefore it behooves parents of children with congenital heart defects to understand and prevent this condition if at all possible. (See http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/infectious-disease/infective-endocarditis/ for more information, but be prepared; some of the photos are pretty graphic.)

Since infants aren't receiving dental cleanings, taking antibiotics before cleanings doesn't become an issue for many of us until our children have recovered from at least one open-heart surgery and in my son's case, it wasn't necessary until after his fenestrated Fontan (since his surgery was done at 9 months of age). The good news regarding that situation is that our CHD babies have time to heal from their cardiac surgery before worrying that something as mundane as a dental cleaning could cause an infection that could cause a hospitalization, or worse -- more surgery or even death.


Why should parents worry about whether or not their children need antibiotics before dental cleanings? The simple answer is because parents of babies with severe, congenital heart defects are dealing with a medical condition which transcends their hearts and has the chance to affect them in other non-cardiac areas as well. A prudent parent is always on watch against potential problems that could be prevented with something as benign as a dose of penicillin before a dental cleaning or some other procedure.

The American Heart Association has been very good at providing wallet cards for patients (or parents) which outlines the people who need to be aware of the guidelines to prevent infective endocarditis (http://www.heart.org/idc/groups/heart-public/@wcm/@hcm/documents/downloadable/ucm_307684.pdf)  My son's cardiologist frequently asked Alex if he needed a new card for his wallet whenever he had his regular visit (every 6 months). What should perhaps cause us concern is that these guidelines are based on logic and not on quantifiable research. That is why I was so interested to read a study actually looking at cumulative incidence and predictors in CHILDREN with congenital heart disease (http://circ.ahajournals.org/content/128/13/1412.full.pdf+html). The reason there haven't been more studies like this is because of the enormity of the task in gathering the information needed to make statistics meaningful. Thankfully, the incidence of infective endocarditis is relatively small (between 2 and 6 cases per 100,000 person-years), but the incidence in patients with underlying valvular heart diseases is greater.

The study referenced above fascinated me because it looked at all of the patients in the Quebec CHD Database who were children 0-18 years of age between January 1, 1988 and March 31, 2010. The authors did a good job of explaining how the data was gathered and analyzed and even detailing possible flaws with the study. What was most interesting were the results:

They found that children most at risk for infective endocarditis were the following:

• children with cyanotic CHD lesions
• children with left-sided lesions
• children with endocardial cushion defects
• children recovering from open-heart surgery, especial during the 6-month postoperative period and in children 3 years of age and younger

This study confirmed the AHA guidelines for giving antibiotics before dental procedures or other surgical procedures but it found that the relaxed AHA guidelines (from 2008) may have left out children who suffered from some of the conditions above who had not had surgery, and especially the patients with left-sided lesions or endocardial cushion defects. My son suffers from left-sided heart lesions (hypoplastic left heart syndrome), and even though the AHA relaxed its guidelines in 2008, my son's cardiologists always insisted that Alex continue to take antibiotics prophylactically and I'm thankfully they did! This study shows that people like Alex are more at risk for developing infective endocarditis than other CHD children who don't have the conditions listed above.

We need more studies like the one done in Quebec. If we can get funding for the Congenital Hearts Future Act, then we will start to develop a database of information like the one that the Canadians can refer to and we will be able to gather information like that in this study here in the United States. The fact that this study questions some of the AHA Guidelines for prevention of infective endocarditis is indicative of the need for more research. Research like this is much easier to do if we have the data in a national database. Let's keep pushing for the United States Congress to provide funding for the Congenital Heart Futures Act so we can continue to modify the AHA guidelines when needed so our children, and aging population of adults with CHDs, won't be at risk for infective endocarditis.




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

Monday, September 30, 2013

World Heart Day



Dear Heart Friends:

Since 2000, the World Heart Federation has instituted September 29th as World Heart Day which is a day around the globe to inform people that heart disease and stroke are the leading cause of death. This year the theme for World Heart Day is Take the Road to a Healthy Heart.  http://www.world-heart-federation.org/what-we-do/awareness/world-heart-day/about-world-heart-day/

Although this effort does not necessarily highlight congenital heart defects, it still brings awareness to a very important issue -- we only have one heart and we have to keep it healthy! This is even more important for those of us who have children who were born with less-than-perfect hearts. In addition to having congenital heart disease, our children can also develop acquired heart disease. It's our job as advocates of the heart, to encourage people to take a road to a healthier heart -- walking, exercising, eating right and just generally reducing stress in our lives. All of these actions taken together will ensure that everyone has a healthier, happier heart.


I love how they created a flyer to encourage children to exercise. I especially love how the hero has a cape and a costume depicting the heart. It's very cute. The flyer/poster also has the character telling fast food to "beat it"! It encourages playing soccer instead of being a couch potato. These are all images children need to see and hold dear.


Go to the link above for an excellent infographic on congenital and acquired heart disease. They really did a good job of showing, in a pictorial way, how your heart can be affected from birth and throughout one's lifetime. It gives statistics on many heart issues, including that 1,000,000 babies are born annually with congenital heart defects worldwide. This is too large a number to ignore!

I hope all of you had a wonderful World Heart Day and that you all treat each and every day as a chance to celebrate the heart you have and follow the road to a healthy heart.



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

Monday, September 23, 2013

Can One Person Make a Difference?

When we are young, many of us dream of making a difference in the world. Whether this difference is due to the career path we choose or the hobbies we are passionate about, we feel that our efforts can change the world, or at least our little corner of the world. As we age, it's not uncommon to get so busy with the business of dealing with life, especially once we marry and have children, that it's not uncommon for that dream of making a difference to be relegated to the back burner and seldom, but wistfully, thought of.

Can one person make a difference? Of course he or she can! The Internet is full of speeches about people who have done so (check out TED Talks for some great ones!), libraries have books full of stories about people making a difference and it is the fodder for many great sermons given on any given day in any given house of worship. So why is it that most people might believe that someone else can make a difference but certainly, not them? What is it that makes some people make the extra effort to actually do the work that makes a difference?

I believe the ingredient that is necessary for a person to really make a difference is passion.  If people are passionate about their beliefs and steadfast in their efforts to really do something to make a difference, they will make a difference.

Let's look at three women in the congenital heart defect community who have made a difference, what they did and how you can be part of their movement to help others!

Deb Hilton 

Deb Hilton is the mother of a child with a severe, congenital heart defect. She has made it her mission to help doctors understand the importance of their communication with parents when they are diagnosing severe, congenital heart defects and making suggestions for treatment. In order to help doctors understand, not only her story but the story of many others, Deb conducted a survey of parents in the congenital heart defect community. She then took her information, analyzed it and has written two different articles that have been published in Pediatric Cardiology -- a journal for doctors!
The titles of the articles are:  How Not to Tell Parents About Their Child's New Diagnosis of Congenital Heart Disease: An Internet Survey of 841 Parents and  Prenatal diagnosis of hypoplastic left heart syndrome: impact of counseling patterns on parental perceptions and decisions regarding termination of pregnancy(for links to the full articles, go here: http://chdresources.homestead.com/PublishedArticles.html)

Kristine McCormick


After the loss of her precious baby, Cora, Kristine McCormick became a mother on a mission. Cora died in Kristine's arms due to an undetected congenital heart defect. Kristine started raising awareness about congenital heart defects and the importance of screening newborns before leaving the hospital. There is an inexpensive test that can be given to babies, it's non-invasive and very quick, called pulse oximetry. Kristine has been advocating for this test to be required before newborns can leave the hospital. Had Cora been given this test, she might still be alive today.  Cora's story so influenced her U.S. Congressman, Senator Brent Waltz, that he proposed a law be passed in Indiana requiring newborns to have pulse oximetry performed on them before they are discharged and he called it Cora's Law. You can read more about it here:  http://corasstory.com/coras-law/



Michelle Rintamaki 

Usually Michelle likes staying in the background helping others and not drawing attention to herself, but I'm going to use her as yet another example of a mom on a mission and making a difference. For almost two decades Michelle and I have been working hard to bring resources to the CHD community. Michelle has amassed the most comprehensive clearinghouse of resources of interest to the CHD community on the Internet. Her support group, Kids with Heart, has done parent matching and holds annual events for those in the Wisconsin area. Michelle is another example of a person who has made a difference, albeit quietly and without the fanfare that Kristine and Deb have garnered. Considering the thousands of people Kids with Heart (with Michelle at the helm) has helped, her contribution is significant.  To purchase resources from Kids with Heart, go here:  http://kidswithheart.org/


Whether you want to create a survey to develop a database of information worthy of writing articles for medical journals or whether you're willing to share your story and possibly influence lawmakers to create laws that could save lives or whether you're willing to gather resources to help others, these are just three ways an ordinary person (with an extraordinary passion) can help members of the CHD community. Any one of us can make a difference in our world. It just takes passion, a mission and determination to see a project from start to finish. You, too, can make a difference, or you can contact one of these ladies to find out what you can do to help them with their mission.



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

Monday, September 16, 2013

Connections

Have you ever met anyone you've communicated with only over the Internet? Were you afraid? Excited? Nervous?

When the Internet became a phenomenon in the 1990s, people worried that the Internet wouldn't be good for social interactions and that people would just sit in front of their computers choosing not to even talk to people in the same room. People worried (in some cases rightfully so) about meeting people who were not who they appeared to be online. There were a lot of warnings against meeting Internet friends or at least precautions that should be taken.

My experience has perhaps been a bit extraordinary. To be fair, most of the friends I meet in person are from the congenital heart defect (CHD) community. We have shared very intimate experiences with each other regarding the life and possible death of our children. We often share photos of our children in the hospital. We cry with each other over our frustrations and celebrate with one another over our little triumphs. We are like family. So is it any wonder that meeting these friends face-to-face has been nothing but joyful?

Here is a photo of my heart-healthy son Joey with me in Washington, D.C. I was so excited to finally meet a mother who called me about my first book, Hypoplastic Left Heart Syndrome: A Handbook for Parents, about 16 or 17 years ago. Barbara McFadden and I had talked on the phone for quite a while about our children with HLHS. It was so exciting to meet Tara -- all grown up and doing great! -- and to give Barbara a hug. All of us were in D.C. to be advocates for the CHD community along with the Adult Congenital Heart Association and Mended Little Hearts.

I will be doing a bit of traveling the latter part of this year so I once again let my heart friends know where I would be and asked if any of them wanted to get together. I am overjoyed that it appears I will finally have a chance to meet the mother of a daughter with HLHS who I have communicate with for a good while. The daughter is an adult and is taking part in the Hypoplastic Hearts book that I hope to eventually get back to (after I finish updating/retooling my website and preparing for my Internet talk radio show!). I am eager to work on the book project because I want to know what kind of situations adults with single ventricle hearts face as they age. Knowledge is power and the more we understand about what happens as a single ventricle heart ages, the more prepared we'll be to deal with whatever happens.

One of the most active Facebook groups I belong to is Heart Mamas. I love that group! We have so much fun sharing, advising, praying for one another, encouraging one another -- it's like being part of a community of mothers, sisters and aunts who all love and care for each other. It's probably the most nurturing group I belong to and I'm so excited that I'll have a chance to meet some of my Heart Mama friends when I go to Chicago in November.

One of the worst parts about finding out your child has a life-threatening, congenital heart defect (CHD) is feeling alone. One of the amazing outcomes, after you reach out to others, is realizing that far from being alone, instead you belong to an surprisingly special community. The CHD community is full of wonderful people who reach out to strangers and help each other through our darkest times. No one understands us like we understand each other. By helping each other, we end up helping ourselves and, most importantly, we realize that we are not alone.



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

Monday, September 9, 2013

Changes


Accepting change is one of the most difficult tasks we face as adults. As children we can't wait for change! To be a year older or a head taller in order to do things like ride on a roller coaster or play certain games are goals of the young child. The funny thing is that once we age or become taller there is no stopping the changes that occur. As adults mature they may not grow taller, but they may become rounder or at least physically different than before. As adults we realize it's not the changes that occur on the outside that are most important. Instead, the changes that help us to grow on the inside to become better people are what's most important.



Over the years I've watched many changes occur in the congenital heart defect (CHD) community. When I first got dial-up Internet in the 1990s there were few pages by CHD parents. Most of them were tributes to CHD angels -- children taken from this earth way too soon. Back then there was no MySpace, no Facebook no YahooGroups. The way we CHD parents connected was by chance a lot of times until we found a way to get better organized. Back then, AOL ruled the Internet as a form of communication. I remember actually being excited when I heard the familiar voice come from my computer saying, "You've Got Mail!"

AOL had chatrooms and we CHD members, mostly parents and grandparents, would frequently set up chats with each other. We even got organized enough to have a Friday Night Chat where we talked about the challenges we faced, the questions we had but had forgotten or didn't have the courage to ask our children's doctors and where we celebrated small triumphs that other family members and even friends couldn't possibly understand. We talked about the "forbidden topics" like spanking, whether we should let our babies sleep in bed with us and breastfeeding the baby with a CHD (how do you measure how much milk they got?). As our children aged, the needs of our core group changed and we had other duties on Friday nights so our chat just faded away.


Many of us changed from being the parents of toddlers or young children to the parents of elementary-aged children or the parents of angels. The angel parents went off and formed their own group. Those of us with older children sometimes found ourselves so busy that we actually didn't need the intense support we had needed when our children were between surgeries or just recovering from an open-heart surgery. Some parents believed that their children had finally been "fixed" and they no longer needed our group. Others had other children to attend to and so our group dynamic changed over time just as our needs changed over time.

In the 1990s and early 2000s there was a great need for books. There was so little written on CHDs for the non-medical person that I received many letters from people thanking me for what I had written and published. Finally they read stories like their own. They had heart brothers and sisters -- other people who understood the challenges they faced. They were not alone!


One surprising change was to see the printed book give way to electronic books. The Kindle and the Nook changed the publishing world and it will never be the same. Some changes are good changes! I remember in 1998 receiving a phone call from a gentleman in California. His best friend was in the hospital and his baby daughter had hypoplastic left heart syndrome. The man desperately wanted my book Hypoplastic Left Heart Syndrome: A Handbook for Parents so I told him I would put one in the mail first thing in the morning. That wasn't good enough for that gentleman. This was before PDFs were invented. This was in the day before Internet service like what we have today. This was when, if you wanted printed material in a hurry, you used a fax machine. This gentleman insisted I fax him the pages from my book that showed the first open-heart procedure and Alexander's Story (the first chapter in the book). I remember feeding page after page into the fax machine and feeling lucky that we had that tool as a resource! How antiquated that process seems today!

Our CHD groups have changed, too. We've become more sophisticated, more knowledgeable. There was a time when I was actually scolded by more than one doctor for wanting to understand my son's heart defect better. The doctors told me that they were the experts and that I should trust them and not question what they wanted to do to my baby. My heart friends today would be furious with those doctors! Doctors today expect parents to come to meetings with questions and pages printed from the Internet with information they want to understand regarding their children's conditions. That is definitely a change for the better!

Instead of meeting in chatrooms like we did in the olden days, now parents set up CarePages, Caring Bridge pages or Facebook Pages devoted to their children. We often use our abbreviations for our children's heart defects to help us find each other -- so it's not uncommon to see HLHS or TOF somewhere in a person's name or on their page. In fact, there are YahooGroups and Facebook Groups devoted to certain heart defects where parents can feel free to talk about issues of common concern and where they can use jargon or abbreviations that everyone understands.


Before MySpace and Facebook we used to have listservs. Yes, there was no "e" at the end of the word -- which was something that drove me crazy as an editor! But our listservs were our lifeline. They were the places we could talk about our fears, our experiences and our frustrations with a group of other people who really got it and who didn't respond with the platitudes or silence that our family members and non-heart friends did. They supported us, cried with us and offered helpful advice. They consoled us. They helped us to know that we weren't alone. 

In the future we'll have yet one more change to look forward to. Now in addition to Facebook, CarePages, Caring Bridge and other places where members of the CHD community can come together, we'll have a weekly radio show to bring us together! The radio show will also address issues of significance to the heart community. It will be a safe place where we can celebrate triumphs, overcome obstacles and rejoice in knowing that we aren't alone. I can't wait to see how the radio show will grow and change, just as I've observed these so many other changes in communication over the years.

I started with a quote and now I will end with another quote:  


I'm looking forward to reaching new heights with you, my dear heart friends! Tune into Heart to Heart With Anna Marie Jaworski: From My Heart to Yours on VoiceAmerica starting November 12th!



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

Monday, September 2, 2013

Heart Cell Regeneration

The heart is an amazing organ that is unlike any other organ in the human body. There are four chambers in the heart and while two of them are called "ventricles," they are not identical nor symmetrical. The left ventricle has the arduous task of pumping blood throughout the entire body while the right ventricle's purpose is pumping blood to the lungs for oxygen. While both chambers are ventricles (the bottom pumping chambers of the heart), they look significantly different -- the left ventricle being a bit bigger and more striated or muscular.

The heart muscle that is found in the myocardium allows the heart to pump regularly and it is this part of the heart that can experience problems when a person has a heart attack. When a person has a heart attack, part of the heart dies and mammals are unable to regenerate heart muscle, which is why heart attacks can be fatal. If only mammals could regenerate heart muscle, their hearts might not weaken and doom them to an untimely death.

What if there was a material that could be grafted onto a heart that would encourage regeneration of a person's own native tissue? That would prevent the body from rejecting the material and could actually strengthen a weakened heart. It appears just such a material has been created.

According to an article in BioSpectrum: The Business of Bioscience (http://www.biospectrumasia.com/biospectrum/news/122439/cardiocel-heals-heart-attracting-stem-cells#.UiUY4WRgZkg) an Australian company, Allied Healthcare, has created a product known as CardioCel® which promotes healing at the site of repair of heart valves. For children born with congenital heart defects involving damaged valves, this product could not only save their lives, but also prevent the children from needing additional operations in the future, since the product seems to attract endogenous stem cells thus allowing normal cell growth and development. This will also help adults whose heart valves have calcified over the years.

One of the most promising aspects of the product is that there is a significantly decreased amount of calcium development in the tissue treated with CardioCel® versus an implant of autologous tissue (tissue taken from another area of a person's body, a.k.a. autograft). The tissue treated with CardioCel® developed 40% less calcium. Calcification, over time, can require repeated surgeries so less calcium should mean that the treatment will present a better repair. In fact, the article says that the site becomes enveloped in endothelial cells and becomes invisible to the immune system thus becoming native tissue.

This is indeed an exciting development in the world of pediatric cardiovascular surgery. Without the ability to clone a human heart, regenerating heart tissue is the next best option! Now the question is, "If a mother finds out in utero that her baby's heart isn't growing properly, would it be possible to somehow operate on the baby before it is born so that it has time, while inside its mother, to let cells repair themselves allowing the baby to be born with a fully functional heart?"

I believe we are moving closer to the day when heart defects can be eradicated. This will only happen with more and more research and with companies like Allied Healthcare leading the way to solutions through the development of bioscience. Reports like the one cited above gives hope to mothers like me, who have children born with less-than-perfect hearts.

Monday, August 26, 2013

Life After Death

When you lose a child to a heart defect, do you dare to try again to have another child? What are the odds of having a second child with the same heart defect? With 35 different identified heart defects, what is the possibility of a sibling contracting one of the other kinds of heart defects? Is it worth the risk?

These are the questions that families must ask themselves when they have a child born with a congenital heart defect. My husband and I decided, before we married, that we wanted two children. Joey was born in 1991 with a healthy heart; Alex was born in 1994 with hypoplastic left heart syndrome (HLHS). The doctors told us to take Alex home to love him for what little time he had left. We said that wasn't an option for us. Instead, the doctors performed lifesaving surgery on Alex. After Alex's first open-heart surgery our son's surgeon recommended we have another child. We told the doctor we only wanted two children. His advice didn't change. We chose not to get pregnant again. Alex just turned 19 years old on August 11, 2013.

What if we had decided to have another child?

That is the situation Jayson and Crystal Darak found themselves facing after their first child died of HLHS. What is the recurrence rate of having another child with a congenital heart defect? How does a couple prepare themselves for possibly having another child with the same or a different kind of heart defect?

Over the last 19 years I've talked to parents about this very issue over and over again. Some choose to have genetic counseling to try to determine if there is a genetic component involved with the heart defect their child had. Some have thrown caution to the wind and have told me that if they had another child with a heart defect, they knew they could handle it; they had survived it before. I've even known families who have intentionally adopted a baby or child with a heart defect. The reactions have been varied and have had various results.

I've had people ask me if I know of any families who have had more than one child with a congenital heart defect. I've had people ask me if I've ever known of a family having more than one child with HLHS. The answer to both questions is "yes." I've even known of one mother who lost a child to HLHS and then over a decade later gave birth to another child with HLHS. The second child survived. The mother couldn't believe it could happen a second time.

It can happen a second time, but the odds are very small. With about 1 in 100 children being born with a heart defect, while they (CHDs as a group) are considered THE most common birth defect, it's still uncommon to have a baby born with a heart defect. So what are the odds of having a second child with a heart defect?

According to an article in the Journal of Pregnancy in 2011, the odds of having a child with a heart defect, if you've already had one child with a heart defect, are higher than professionals previously thought. According to that article "Total recurrence rate of CHD was 3.98%, 4.06% in single familial risk, 2.9% in double, and 5% in multiple risk. It was 3.5% in case of one previously affected child; 4.5% with 2 children; 5.2% with the mother alone affected and 7.5% with father alone affected and 3.5% with a single distant relative." (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184425/). One has to be careful when looking at the literature and overgeneralizing. I found one article in Circulation, a journal published by the American Heart Association, but the study was conducted entirely in Denmark. It's relatively easier for researchers to gather data like this from countries who keep medical records on all of their citizens due to socialized medicine, but can we necessarily rest assured that those data correspond to citizens in the United States? Oddly enough, the statistics described in the Danish article (http://circ.ahajournals.org/content/120/4/295.full) actually corresponded to another article I found published by British doctors who investigated recurrence rates based on referral rates for fetal echocardiography after a family had one child with a CHD (http://www.ncbi.nlm.nih.gov/pubmed/12957444).

What about HLHS specifically? I found one article specifically addressing this issue. It reported an 8% recurrence rate (http://www.ncbi.nlm.nih.gov/pubmed/17936159), which oddly enough, actually relates perfectly to the Danish and British studies. But while this number is scary, it also means that there is a 92% chance that a family with a child with HLHS will have a heart-healthy second child.

Is it worth the risk? For the Darak family, it appears it was. The news article about the Daraks (http://www.wilsontimes.com/News/Feature/Story/24391504----HEART-LOOKS-BEAUTIFUL-) was a joyful one for me to read. Fetal echocardiography reported that their second child had a beautiful, perfect heart. This actually corresponds to my own experience. While I haven't actually gathered data and done a scientific analysis, of the heart families I have met in person, at the hospital, over the Internet (thanks to Facebook, AOL chatrooms and Yahoo groups), most families have only one child with a congenital heart defect.

Each family has to decide for itself whether or not risking having a second child with a congenital heart defect is a good idea. Each family knows its support systems, what medical assistance is available, the quality of the insurance available to the family and whether or not a family can emotionally handle whatever the result may be. For the family in the news article cited above, getting pregnant a second time meant having a second chance at parenthood. It meant being the parents of two children. It means valuing life over death.