It's almost CHD Awareness Month!

What are you doing to spread the word about CHD, its warning signs, its long term effects and the little known facts about its frequency? We'd love to hear!


Traci Lisa's daughter, Cassidy, was born with Tetralogy of Fallot w/ Pulmonary Atresia. This heart mom is spreading the word about CHD through her talent... making awareness jewelry. Check it out!

Share your efforts with us and spread the word. February is National CHD month. What can you do to save a life?!

Health care system holds heart patients hostage

Check out ABC News' Hostages Dying for Healthcare Reform article... it sounds just like my family, does it sound like yours?

Some takeaways from the article:

• Many of us are captive to our big company insurance plans - no other companies will take us, and if we lapse in our policies, we're out of luck due to pre-existing conditions.
• In 2005, 60% of all bankruptcies were related to medical expenses. Wonder what it is now that the recession is in full swing...
  
• Heart conditions account for $123 billion in health expenses a year.

We may not agree within our community of heart warriors what the best solution is for health care reform, but we have all, likely, lived first-hand the need for change. Take a moment to write your congressional representative and share your story with them.

Treatments Hard to Come By...

Take a peak at this entry on the Wall Street Journal blog... it doesn't come as a surprise to patients and families of CHD patients, but it's news all the same:

There is not enough research into CHDs.

What's wrong, however, is the statement that this problem is too small for companies to invest research in. With 1 in 120 (approximately) kids born with heart defects, and a large percentage of those kids needing intervention, you can bet it's big enough to pay attention to.

The article does highlight, though, that there is hope in terms of new research. According to WSJ, the NIH is studying treatments in children with certain heart conditions and the American College of Cardiology is launching a catheter registry that aims to help inform doctors who treat kids. And at least one heart device for kids appears to be on the way: Medtronic’s experimental heart valve for both children and adults who had heart defects at birth.

Baby steps, but we can get there!

Never Give Up

An article published by Associated Press today left me dumbfounded. It reminded me to never, ever give up hope. You've GOT to read this article in its entirety (see summary below). See if you feel the same...

British girl's heart heals itself after transplant

Excerpted from Maria Cheng, Ap Medical Writer – Tue Jul 14, 12:40 am ET

In 1994, when Hannah Clark was eight months old, she developed severe heart failure and doctors put her on a waiting list to get a new heart. But Clark's heart difficulties caused problems with her lungs as well. To avoid a risky heart/lung transplant, doctors took a chance at a new and novel idea.

Sir Magdi Yacoub of Imperial College London thought that said that if Clark's heart was given a time-out, it might be able to recover on its own. So in 1995, Yacoub and others grafted a donor heart from a 5-month-old directly onto Clark's own heart. After four and a half years, both hearts were working fine, so Yacoub and colleagues decided not to take out the extra heart.

However, the powerful anti-rejection drugs Clark was taking caused cancer, which led to chemotherapy. Even when doctors lowered the doses of drugs to suppress Clark's immune system, the cancer spread, and Clark's body eventually rejected the donor heart.

In February 2006, doctors removed Clark's donor heart. Luckily, by that time, Clark's own heart seemed to have fully recovered. Since then, Clark — now 16 years old — has started playing sports, gotten a part-time job, and plans to go back to school in September.

At the moment, doctors aren't sure how that regeneration happens. Some think there are a small number of stem cells in the heart, which may somehow be triggered in crisis situations to heal damaged tissue.

Granted, Hannah's case is a rare and miraculous one, but it does give us a window of hope for the future!

Side note - even if this were to become an option for treatment in the future, there is a serious shortage of donor organs available for such transplants. Consider becoming an organ donor today, and asking your loved ones to do the same!

Great News: Scientists ID'd Heart Stem Cells!

Source: Constance Holden, ScienceNOW Daily News
2 July 2009

I was thrilled to read today that scientists have finally identified the cardiac stem cells that create all of the major cell types in the human heart. In recent years, scientists identified these cells in embryotic mice, but now a team at the Massachusetts General Hospital in Boston have found these same cells (that express the protein Islet 1) in humans. The team reports its work in Nature.

What does this mean? That researchers are one step closer to creating new cardiac stem cells in the heart's major cell types: heart muscle (cardiomyocytes), smooth muscle, and blood vessel lining (endothelium).

Chien, the researcher who made this astounding discovery, cautions that these primordial stem cells could not be used for therapy because they could develop into undesired cell types, but they could be used for disease modeling and drug screening and - most importantly to those of us affected by CHD - further research on congenital heart malformations. Chien speculates that CHD's "may be a stem cell disease" because Islet 1 cells are clustered in areas that are "hot spots" for heart defects.

The future I hope it holds for us? The possibility of growing human "heart parts" (such as strips of muscle or a valve) to assist CHD survivors.

Physical Restriction after Fontan: How do You Know?

A recent article in the American Heart Journal from researchers at the Hospital for Sick Children in Toronto questions the use of physical activity restrictions for children after undergoing the Fontan operation. In the abstract online, the researchers studied how the information regarding restrictions are conveyed from the cardiologist, parent and in the medical charts - often these three sources disagree. Regardless of the cardiologist reported restrictions, 70% of parents reported that their child's activity was restricted. Parents and cardiologists report the same body contact restrictions, but differ for exertion and competition restrictions. Medical charts reflect competitive sport, but not body contact or exertion restrictions. So, what to do if you're a parent?

This study suggests that parents are left with uncertainty about physical activity, and rightly so, given the significant variance in the sources of information they receive.Primary care doctors are often not included in the loop (medical records don't reflect the restrictions for exertion and body contact).

Cardiologists need to work to ensure that activity restrictions are accurately conveyed, which will enable parents and primary care providers to confidently encourage the active lifestyles. And parents, talk to your cardiologists - don't take the advice of the primary doctor (though he or she may be correct). While your primary care physician is likely a wonderful, well rounded person, the specialist is better able to answer the questions specific to your child's condition.

Charities Recognized for CHD Efforts

This past month, two outstanding CHD-related charities were selected by IntelliClear as its 2008 Clarity Trust recipients. Congratulations to Its My Heart and HeartGift Foundation!

As the Congenital Heart Futures Act is being introduced to both houses of the United States Congress this spring, IntelliClear recognizes this year the outstanding efforts of It's My Heart and HeartGift as leading the charge on children's CHD.

"According to the American Association of Thoracic Surgery, an astonishing 93% of the world's population has no access to cardiac surgery. With the assistance of generous corporate citizens like IntelliClear -- by combining our resources, our skills and our compassion -- HeartGift's all volunteer team of pediatric physicians will continue to save the lives of children born with CHD," says Lisa Rodman, Executive Director of The
HeartGift Foundation.

"Since CHD is America's #1 birth defect, it is vital that we bring awareness to the nation via community outreach, hospital programs and other support services that bring families and resources together. It's My Heart, Inc. relies heavily on the compassion of corporations like IntelliClear Inc., allowing us to further our advocacy and awareness programs for those affected by CHD," says Corrie Stassen, Executive Director of It's My Heart, Inc.

If you haven't taken a chance to check out these two fantastic charities, take a look today!