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!

The Care Behind the Kids!

Mark O'Shea and the Staff of the Pediatric Heart Institute at Vanderbilt Children's Hospital (Nashville, Tennessee) are back! But this is not a music video... it's a nine minute look at the Doctors, Nurses, and Staff of the Heart Institute and what they do. We present this to you on Valentine's Day with love and best wishes from both Kim and Steve!

Online Discussion on Adult CHD to be held October 2

Next Thursday, October 2, 2008 at 12 noon (EST) Cleveland Clinic will host an online health chat on Adult Congenital Heart Disease.

During this chat, Dr. Richard Krasuski, Director of Adult Congenital Heart Disease Services and a staff cardiologist in the Section of Clinical Cardiology, Department of Cardiovascular Medicine at Cleveland Clinic Heart and Vascular Institute, explores the treatment options available for adults living with a congenital heart disease. More information on this chat can be found at http://www.clevelandclinic.org/health/ChatReg/Krasuski.html.

Dr. Krasuski's specialty interests include adult congenital heart disease including atrial septal defects, patent foramen ovale, ventricular septal defects, coarctation of the aorta, Ebstein anomaly, Eisenmenger syndrome, transposition of the great arteries, Tetralogy of Fallot and patent ductus arteriosus. He also specializes in pulmonary hypertension, mitral valve disease, cardiac catheterization, transesophageal echocardiography and mitral, aortic and pulmonic valvuloplasty.

$1 Million Gift to Support Earlier CHD Detection

Washington, DC (PRWEB ) May 15, 2008 -- The Elsie & Marvin Dekelboum Family Foundation has announced a gift of $1 million to Children’s National Medical Center. The gift will allow the Children’s National Heart Institute to launch a Congenital Heart Defect Screening Study. Children’s National will name a three-bed bay in the new Cardiac Intensive Care Unit in honor of the Elsie & Marvin Dekelboum Family Foundation.

The heart defect screening study will focus on the effectiveness of an inexpensive device called a pulse oxymeter that could help identify more than 80 percent of life-threatening congenital heart defects. If initial findings are validated, the Dekelboum gift will enable Children’s National to promote its use in hospitals across the country and around the world – improving early detection and health outcomes for children everywhere.

World's First Non-Surgical Tricuspid Valve Replacement!!

Nurses at Miami Children’s Hospital’s Congenital Heart Institute helped ensure a good outcome for the recipient of the world’s first non-surgical tricuspid valve replacement, placed in January in the facility’s cardiac catheterization lab.

Click here for the complete story from Nurse.Com.