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.

http://www.world-heart-federation.org/what-we-do/awareness/world-heart-day/infographic/

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.

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.

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.

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.

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.