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Sharing the cure: Developing regional self-sustaining centers

Despite the fact that heart defects (also known as congenital heart disease or CHD) are the most common human birth defect worldwide, most people do not understand much about their prevalence and treatability. Today in the United States, everyone has access to cardiac care; the media sees no point in covering CHD. Just decades ago however, open heart surgery was thought of a miracle cure in the U.S. Today in most countries around the world, open heart surgery continues to be thought of as a miracle cure. This is because at least 85% of children on our planet still do not have access to life-saving cardiac care. Twenty-five years ago Heart to Heart began spreading this cure by developing regional pediatric cardiac centers of excellence in Russia. Our goal in Russia is nationwide access – to ensure all children, regardless of what part of the country they are born in, have access to life-saving heart care.

Every year in the Russian Federation, over 19,000 babies are born with congenital heart defects. Over one-third of them require cardiac intervention within their first year of life to reach their first birthday. What is the best way to spread this cure so that all children have access to timely treatment?

Russia is vast: it encompasses eight geopolitical districts spanning nine time zones, and is home to a population of 144 million. Our Into the Heartland Campaign (20022019) is a strategic plan to give every child in Russia access to timely life-saving heart care by developing a network of seven advanced pediatric cardiac regional centers of excellence strategically located throughout the nation.

“Heart to Heart has become the model that all other organizations emulate for delivering cardiac surgery to needy children in the world. Heart to Heart’s efforts and accomplishments are to be admired and applauded by the global community.”

James L. Cox, MD President Emeritus, American Association for Thoracic Surgery

Leaders in the delivery of cardiac surgery for children in need

Heart to Heart has long been recognized as a leader in developing regional self-sustaining children’s heart programs where advanced cardiac treatment can be provided to babies and children of any age.

Our success in developing self-sustaining regional pediatric cardiac centers in three of Russia’s Federal Districts (total population 63 million) demonstrates that, in a relatively short period of time, modern heart care can be made accessible to millions of families in a cost-effective and replicable manner. Through our collaborative partnerships Heart to Heart continues to capitalize on Russia’s evolving nationwide cardiac care infrastructure to give millions more families access to care now.

At each site, we tailor our education-based program model to address the evolving needs of all pediatric cardiac team members – cardiology, cath lab, surgery, and ICU – as they develop the skills and teamwork required to treat children born with heart defects.

2016: Into the Heartland Campaign on track for success

In Russia, there is still a backlog of children with CHD waiting for life-saving heart surgery. Thousands of these children are still operable; but sadly, many others will not live to reach adulthood. At centers where Heart to Heart has worked to build capacity, new pediatric cardiac teams have already been able to treat all the children on their regions’ “backlog list.” And these new teams now operate in real-time: as soon as babies are born with CHD, they are diagnosed and treated in a timely manner. This is a major accomplishment and one Heart to Heart is working to replicate throughout Russia’s heartland.

As we approach the homestretch of our Into the Heartland Campaign, we have already finalized our work at four pediatric heart centers in major metropolitan areas throughout Russia and are on track to finalize our Campaign to ensure every child has access to timely cardiac care. In the process, we have trained hundreds of Russia’s first generation of specialists exclusively dedicated to pediatric cardiology and cardiac surgery – including many of its current and future national leaders – and our work continues to save thousands of children’s lives.

Global impact – in and beyond Russia

The legacy of our pioneering work – teams of highly trained specialists at seven advanced self-sustaining children’s heart programs – will ensure that babies and children throughout Russia will have access to life-saving heart care. By the end of our Campaign, specialists trained by Heart to Heart will have saved the lives of more than 30,000 babies and children in Russia, and will continue to save the lives of over 3,000 children each year in perpetuity. We will have helped establish a nationwide system for delivering heart care to all children in the world’s largest country. And we will have trained a critical mass of specialists who in turn train others in Russia for generations to come.

In fact, surgeons we have trained have already reached out to save children with CHD in Uzbekistan, Kazakhstan, Georgia, Kuwait, and other countries. We are so close to saying, “Mission Accomplished!” in Russia, that Heart to Heart is now in a position to take our program model, volunteers, and highly-trained Russian colleagues to other parts of the globe – bringing hope and healing to families of children waiting for life-saving surgery.

What does “self-sustaining” mean?
A Heart to Heart program-in-development graduates to self-sustainability when:

(1) annual volume of cardiac surgical procedures is > 250 cases with excellent surgical results;

(2) local physicians have demonstrated their ability to treat (diagnose, surgically repair, and provide post-operative care) CHD patients, including newborns, with defects in RACHS* 1-4 categories;

(3) the local team is able to maintain excellent surgical outcomes on the case-mix described above for three consecutive years. Self-sustaining programs continue to function at a high level once Heart to Heart medical volunteers have transferred their knowledge and experience and guided them to achieve self-sustainability status.

*The Risk Adjustment for Congenital Heart Surgery (RACHS-1) method is an internationally recognized metric which assigns a level of risk to each type of operation performed in pediatric cardiac surgery.

How can CHD be managed in resource-poor areas?
The key to managing CHD in resource-poor areas is to develop regional self-sustaining centers of excellence.

The optimal medical infrastructure to save children born with heart defects provides readily-accessible expert pediatric cardiac care to all children, including newborns to age 3 (when most children with CHD need to be treated and are still operable). The ability to perform the right cardiac procedure on the right patient at the right time leads to a high success rate (success rate > 95%).

A comprehensive approach to treating children with heart defects requires regional access and regional expertise. Pediatric cardiac patients require regional pediatric cardiac specialists before, during, and after surgery. Transportation of these sick babies and children is difficult, high-risk, and expensive. Having regional children’s heart centers minimizes risks and expenses associated with long distance transport to hospital.

Developing comprehensive regional pediatric cardiac surgery programs able to provide medical and surgical treatment to complex patients, including newborns, significantly improves overall regional medical care for all children. Heart to Heart’s regional approach leads to an enhanced overall pediatric medical infrastructure: a rising tide raising all boats.  

Read our founder’s perspective
“We focus on teaching life-saving surgical technology to treat all children with congenital heart defects, from the most complex newborns to the most complex adolescents. The program model Heart to Heart employs reflects the evolution of contemporary congenital heart surgery. We believe this program model is the most effective way of teaching how to save the lives of children born with heart disease in areas of need around the world.

We emphasize the critical necessity of a coordinated team approach that engages the whole spectrum of medical, administrative, and civic partners needed to ensure self-sustainability.

Our teaching methodology is geared towards utilizing every surgical case as a teaching opportunity, in addition to saving a child’s life. We teach teams – expanding their abilities – so that they can save thousands more children.”
 
Dr. Nilas Young, Heart to Heart Founder & Medical Director
Professor & Chief, Cardiothoracic Surgery
UC Davis Medical Center