The Pulse

Children Dying Preventable Deaths from Congenital Heart Disease


Minneapolis, MN, USA – Over one million children are born with congenital heart disease (CHD) each year. When children with CHD receive timely treatment, 85% can survive into adulthood to live healthy, productive lives. Sadly, 90% of the children with CHD live in poor regions with little or no access to care. Congenital heart disease and other serious birth defects are among the top five causes of death of children worldwide. 

In its new report, A Voice for the Invisible Child, and echoed in this week’s The Lancet,
Children’s HeartLink calls for the needs of children with heart disease to be included in efforts to strengthen health systems around the word. Specifically, priorities must be made to build a pediatric cardiac workforce, collect data on CHD in national health surveys and cause of child death statistics, and finance health coverage in a way that protects families from impoverishment when they seek care.

Brian Atwood, former Administrator of USAID, urges leaders in global health and development: “Increasing access to pediatric cardiac care is a lofty but not insurmountable goal. It is an achievable goal, grounded in health system sustainability and equity. It will save children’s lives.”

Since the turn of the millennium, child deaths have been cut in half thanks to improved public health and poverty reduction efforts. It is predicted that the number will halve again by 2030. That is the year that the UN Sustainable Development Goals call for the world to end preventable child deaths. This target will not be met without addressing congenital heart disease. As the overall rate of child deaths decreases, the burden of children born with heart disease will become more apparent. 

Established in 1969, Children’s HeartLink is a Minnesota, USA-based nonprofit humanitarian organization currently working in Brazil, China, India, Malaysia, Ukraine and Vietnam. We partner with local institutions to strengthen health systems in order to develop pediatric cardiac centers of excellence. Children HeartLink’s strategic vision includes developing 50 Centers of Excellence and reaching one million children with heart disease by 2030.

HeartLink Gala Presented by Cargill a Huge Success!

Thanks to our many generous sponsors and donors, we raised over $900,000 at HeartLink Gala Presented by Cargill! This is a record for our organization and will help us expand our work and save thousands more children with heart disease next year. We are grateful for your support! You can find photos from the event on Children's HeartLink's Facebook page. We hope you can join us at 2017 HeartLink Gala Presented by McKinsey & Company. Mark your calendars for Friday, November 3, 2017, at the Hilton Minneapolis. 

Macalester Fellows Study Sustainability in Pediatric Cardiac Care

by Ryn Wiebe, Communications and Grants Specialist

Anyone who has been to the Children’s HeartLink headquarters in Minneapolis knows that it is not as  grand as it might sound. Our 11 Minnesota-based staff occupy a small brick building in the parking lot of a funeral home. Our building used to serve as their administrative offices, and we take up as much space as the structure allows us. But this summer we managed to squeeze in an extra three people when we had the pleasure of hosting students from Macalester College’s Sustainability Fellowship Program. 

Funding for the students’ activities and travel this summer was generously covered by a grant from Macalester’s Educating Sustainability Ambassadors (ESA) initiative, which aims to give students a multifaceted, real-world perspective on the framework of sustainability. At Children’s HeartLink, Farah AlHaddad, Milliecia Lacy and Chris Pieper seized the opportunity to study sustainable pediatric cardiac programs in low-resource settings. 

Farah, Milliecia and Chris got the chance to travel overseas to two of our partner hospitals in June. They participated in an International Quality Improvement Collaboration (IQIC) conference at Children’s HeartLink Center of Excellence, Amrita Institute of Medical Sciences, in Kochi, India, before continuing on to Children’s HeartLink Center of Excellence, Institut Jantung Negara (IJN), in Kuala Lumpur, Malaysia. The three Macalester students attended lectures and meetings, observed hospital proceedings, and interviewed patients and families, medical teams and hospital administrators for their project. 

Showing no signs of jet leg, Farah, Milliecia and Chris have now returned to Children’s HeartLink to compile the data into a report detailing their findings for the last weeks of their practicum.
“We know that 10 weeks was a short amount of time and our work is only a small addition to the huge collection of projects, research, initiatives, plans, strategies, knowledge and visions of Children’s HeartLink, but we hope it is useful and will be utilized to create programs that are not only stronger, but also more sustainable, “ says AlHaddad. 

The three students will present their findings to the fellowship program at Macalester, and will also share the final recommendations with IJN. 

“On a personal level,” Lacy reflects, “working with such dedicated people from around the world, working hard to make differences and ultimately change people’s lives has been truly inspirational. Dr. Siva, a surgeon at IJN said that ‘our marriage with Children’s HeartLink was the best thing to ever happen to our organization.’ This quote really showed us firsthand the far-reaching impact that small, dedicated teams can have on the lives of real people around the world.” 

“Most of us didn’t really think seriously about starting careers in NGO work after college,” Pieper adds, “but what this experience showed us was how powerful the impact of small organizations like Children’s HeartLink can be.”

Farah, Millecia (center, back row), and Chris (center, front row) with staff at IJN

Five Generations

by Ryn Wiebe, Development and Communications Associate

Just before heading to Kolkata, India, for my first full-team training visit to a Children’s HeartLink partner hospital, I got one last email from my dad. He wished me safe travels and “a little bit of adventure” and ended with “You are the fifth generation of your family to work in India. We are as proud as can be.” 

My ancestors Tina and Daniel F. Bergthold

In 1904, the first of my family traveled to India by steamer ship, and finally arrived in Hyderabad in a matter of time better framed in months than weeks. In the moments I found my own trip to be arduous or uncomfortable, I reminded myself that I was in an airplane seat for a few hours--with  movies and anti-malaria pills and a plentiful supply of clean water. It might take an adventurous streak to make such a long journey now, but back then it took an indomitable spirit to make an almost inconceivable journey.

Although my family has historically been drawn to India for missionary work, my purpose in Kolkata was to learn about our partner hospital Rabindranath Tagore International Institute of Cardiac Sciences (RTIICS). Children’s HeartLink is a catalyst organization that improves access to quality care for kids with heart defects. Along with an excellent (and fun!) team of doctors and nurses from Children’s Hospitals and Clinics of Minnesota, I got the chance to see what our work looks like as it’s happening, instead of my usual view--from my desk in Minneapolis, Minnesota. RTIICS is an advanced hospital in India, with a surgical caseload maybe three times larger than what our best hospitals here handle, but RTIICS inevitably runs into problems of space, resources and time.

We all share a common driving force: helping more kids survive and thrive. It only makes sense that we find ways to collaborate to achieve that goal. 

On a previous trip to India when I was 9 years old, I found myself in need of an emergency appendectomy. At the time, my grandparents lived in the mountain town of Kodaikanal in Tamil Nadu, and I was driven to the small hospital where, incidentally, my great aunt was born quite a few years earlier. When the hospital team brought me in for surgery, I remember looking around through the fog of my very high fever and thinking: “This does not look like an operating room. This just looks like a regular room.” Clearly my surgery was successful and I lived to travel another day, but I experienced firsthand how essential quality surgical care is no matter where, or who, you are. Like heart defects, you can’t prevent emergency appendectomies, you can only hope that you’ll have access to the care you need when you need it. 

From left: Dr. Anand, cousin Hannah, me (post-surgery), cousin Matt

I don’t take care of patients, and I do not perform open heart surgery, but my experiences help me broaden the audience for, and understanding of what we call: The Need. The Need for quality surgical care, for pediatric cardiac specialists, for sharing with others around the world what we have and what we’ve learned using our resources and opportunities. This past year access to surgery was included in the United Nations Sustainable Development Goals. I consider myself extremely fortunate to have the chance to work with so many knowledgeable and passionate people who are on the frontlines making that goal become a reality. I am as proud as can be of the work we are doing together.

In Kolkata with the medical volunteer team from Children's Hospitals and Clinics of Minnesota. 

Susan Bordson: Telling Children’s HeartLink’s Stories Through Film

Filmmaker Susan Bordson has shared her time and talents with Children’s HeartLink for more than a decade. In a recent interview she talked about her experiences working with us, and her approach to telling stories through film.

Why did you first decide to volunteer at Children’s HeartLink, and what keeps you coming back after all of these years?
I started volunteering in 2004. My youngest child was born in 1996 with complex congenital heart disease, and I’d been a full-time parent. My son had received excellent care at Children’s Hospitals and Clinics of Minnesota and was doing miraculously well. I was looking for opportunities where I could "dust off" career skills and do work with real impact. When I discovered Children’s HeartLink, it was a perfect alignment for me. The quality of the staff members, who have become my longtime friends, and the value of the work keep me committed to Children’s HeartLink.

Do you have any stories to share about your trip last May to Chengdu, China, to film footage?
I have one especially poignant story from that trip. We were filming a family in a hallway outside the operating room as they waited to hand their young son to a member of the medical team. Only one parent was allowed to carry the child through the doors to the operating room. I found myself standing with the mother, who was standing alone when her husband left with their son. I  immediately flashed back to when we’d handed our child over to his surgical team many years ago. The mother spoke no English, so I flagged down a random person, who also spoke little English, and asked him to explain that I was also a "heart mom." Once I saw recognition on her face, I took a chance and hugged her. She grabbed me tightly, shaking and crying, finally letting go of her stoicism. We stood there for a long time. This moment illustrates to me a message we often include in our films: A parent’s love and concern for their children is universal.

Filming Saving Children in China: Team to Team Cardiac Training

Your films about Children’s HeartLink have received two awards this year. What is it about your films that make such a powerful connection to the viewer?
Children’s HeartLink’s stories are truly remarkable, so it is not difficult to produce compelling films. However, the wonderful skills of partner cinematographers Ben Niles and Nate Maydole are key, because quality footage is a requirement for a high-quality film. Both of these cinematographers have captured amazing, intimate visuals while working in unpredictable and challenging environments. Their work, combined with my experience with the organization, has allowed us to create some film productions of which I’m very proud and honored to be part of.

How did your professional background prepare you for the film projects you do for Children’s HeartLink?
I’m grateful for my varied career positions in broadcasting, meetings and events, and video production. I gained useful skills from each industry: I learned how to write succinct copy for TV spots, how to holistically design an audience experience for live events, and how to produce documentary-style short films through the voices of authentic characters. To help nonprofits and businesses share their stories in meaningful ways, I rely on all of these skills.

Why do you believe that short films and videos are important to Children’s HeartLink and its efforts to share the stories of its work with friends and supporters?
A nonprofit organization’s ability to share the stories of its impact is critical for gaining new supporters and new funding. In today’s "noisy" world, this is more difficult than ever. Good storytelling makes messages engaging and more compelling. The most efficient way to move hearts and minds simultaneously is through strategic filmmaking. If done well, it can give audiences an intimate, "inside peek" at an organization’s work like no other medium can. The absolute key for success, however, is authenticity.  I’m deeply grateful to Children’s HeartLink for the opportunities I’ve had to witness and share the work of its medical teams around the world.