Annabel Lavielle and the Global Heart Network

Please address any questions or commentary to:
Mary Krendel
marykrendel@gmail.com

Abstract

The Global Heart Network (GHN) Platform, a project designed and implemented by Annabel Lavielle, began in 2011. As requested by international nonprofit organizations in the field of pediatric cardiology, the Network will function as an online network, connecting individuals and groups concerned with global humanitarian medicine. Although the preliminary initiative focuses on cardiology, Annabel's model is widely applicable, perhaps even beyond medicine. Annabel holds extensive previous experience as a collaborative liaison for international cardiology efforts and as a parent of children with congenital heart defects.

In Cameroon, a boy climbs aboard an airplane, bound for Charles DeGaulle Airport. His lips and fingernails are completely blue, and his family sent him off today with a piece of French cheese, a family photograph, and a plastic watch. When Mohammed tires, he crouches down, then stands. A casual observer might imagine blood rushing through his heart, allowing fresh oxygen through his vasculature, but he soon stands again and runs off.

Mohammed is limited by the Tetralogy of Fallot, which carries many of the marks of problematic heart development. The causes of Tetralogy of Fallot includes ventricular septal defect, in which a hole between his right and left ventricles failed to close before birth; narrowed pulmonary valve, which should bring deoxygenated blood into his heart; a thicker right ventricular wall; and a displacement of the aorta over the same ventricular septal defect (PubMed, 2011).

In Russia, Sergey, age five, shares the abnormal skin coloration. His mother brings him to the clinic in his hometown. A nurse checks him over, and within a month, a surgeon repairs his heart, leaving him with carnation-colored lips. After another month, Sergey returns home, or rather, he skips the whole way. His mother cannot convince him to slow down. He stops only to glance into the mirror at his own blushing cheeks. Neither Mohammed nor Sergey can pay for their surgeries.

According to the American Heart Association (2007), 'heart defects are among the most common birth defects;' they are also 'the leading cause of birth defect-related deaths.' Even in the United States, more children die from congenital heart defects (CHDs) than from all types of childhood cancers combined. CHD programs receive funds equivalent to ⅕ those devoted to pediatric cancer research (March of Dimes, as cited by Lavielle, 2011).

When the mammalian heart develops in an embryo, it begins as two parallel tubes, which fuse together. Channels open and close between the tubes and their fused structures, and then the tubes twist into shape to allow the heart to pump freshly oxygenated blood through the body. Just before birth, more channels close, forcing the neonate's blood to gain oxygen from the lungs, rather than the placenta. All forms of organ development, but especially heart development, require very specific and extensive cell-to-cell signalling. If a signalling pathway during early development is altered, even slightly, subsequent pathways can be drastically thrown off course (Forristall, 2011). A plethora of abnormalities during heart development, such as a single aberration in the reactions that lead to protein production, can lead to any of the 40 classified CHDs. Research and treatment strategies progress rapidly, allowing more and more children to survive their CHDs, but over half of children with CHDs require at least one invasive surgery (Lavielle, 2011).

Pediatric nonprofit organizations try to catch CHDs in childhood, before the defects can wreak havoc on kids' developing bodies, which require plentiful oxygen supply. Children with more efficient hearts have preferable oxygen-delivery systems. A functional circulatory system delivers blood to other developing organs and supports the work of other systems, such as the endocrine system, which plays an essential role in healthy child, adolescent, and adult development. Inadequate circulation can also impair brain development. If the heart is saved, the rest of the body is rescued.

Every year, over a million babies are born with CHDs, and 90% of these infants will not receive optimal care (Neirotti, 2004 as cited by Lavielle, 2011). In the battle against the CHDs in developing countries, where affordable pediatric cardiac care is often unavailable and/or families cannot afford it, a slew of organizations work to open clinics and transport children, often internationally, to hospitals in the first world. The children return to their families with a few stitches, pink lips, and the youthful energy they have all missed.

For every event leading up to the joyous return, a functional nongovernmental organization (NGO) relies on the efforts of a diverse team, which usually includes: 1) the medical core, including doctors and nurses; 2) logistical coordinators, which usually include everyone from managers to travel agents; and certainly not least, 3) support staff, including web designers, marketing representatives, project assistants, and a plethora of other individuals. None of the humanitarian work would occur without donors, who fuel every effort and are truly, in Annabel's words, 'The driving force behind the Platform.' With regards to humanitarian medical nonprofit work, 'It really takes all [kinds of people],' Annabel says. Although these organizations pursue the same goal (to provide better cardiac care to more children), function in many of the same areas (often within the same hospitals), and face the same challenges, they lack a webbased platform for communication and collaboration.

In Paris or San Francisco, Annabel Lavielle answers her cellular phone. The clinic in Russia checks in. Annabel allows her eyes to linger on a photo. Mohammed stands, grinning, beside his bicycle in the woods near her house. Annabel's family, including three daughters, cared for Mohammed in France, where he travelled for life-changing surgery. Annabel discusses her family's experience

For [Mohammed and another boy, Cheikhou], we did a homemade photograph and writing album about their stay with us. The mission was such that we were not in contact with the parents or their families, so we all wrote a page, so that the memory would be with his family forever. Lucy, who was fourteen at the time, wrote, 'Mommy says I won't see you again, because that's the situation, but I know I will see you again someday, even if it's in Heaven.' It was a really wonderful lesson for the girls.

The photograph has stared back at her for years. Annabel pushes her eyes back to the computer screen. She will connect the necessary individuals to fix other kids' hearts.

Annabel connects health care providers to individuals in dire need. Doctors, coordinators, and volunteers strive to bring health care to those in need. The worseoff patients often lack the connections to reach the care they require. Even without the Platform, Annabel has long served as a liaison between doctors and potential patients.

'I'm in a unique position,' Annabel says. 'As a parent, I've seen cardiologists in London, Paris, and San Francisco.' This 'unique position' graces Annabel's life at a disproportionately high cost. 'Congenital heart defects run in my family,' Annabel continues. Her firstborn son, Oscar, was taken at birth by hypoplastic, or underdeveloped, left heart syndrome. She tries to smile. 'Thankfully, medicine has progressed to allow children with his condition to survive.' Annabel's experience with CHDs in her family is not limited to Oscar's death. Her daughter, Elise, underwent lifesaving surgery only six months after her birth. Today, Elise is 16 and very healthy.

Annabel holds a global, yet intimate understanding of cardiac care practices. This could make her especially suitable to lead a movement toward greater collaboration. 'I have contacts all over the world,' she says, 'and the Platform could allow many of them to connect with one another.' Her travels and involvement in cardiac care may make her especially suitable as a collaborative leader, able to connect with both doctors and, perhaps more delicately, families plagued by cardiac problems.

Improved collaboration would increase the efficiency of humanitarian organizations (Lavielle, 2011; King, 2005; Mills, 2005; Zhang et al., 2002). Many organizations share causes and goals, but work toward them independently. If humanitarian organizations share their experiences and plans with one another, they might arrive at new conclusions about how to maximize their efficiency. King (2005) summarizes the importance of collaboration for humanitarian initiatives

The sharing of information is critical for humanitarian emergencies because no single entity can be the source of all of the necessary information. Making critical information widely available not only reduces duplication of effort, but also enhances coordination and provides a common knowledge base so that critical information can be pooled, analyzed, compared, contrasted, validated and reconciled. Collaboration networks should be designed to dismantle institutional stovepipes, facilitate the sharing of information among organizations, capture lessons learned and best practices, and provide a common knowledge base for the community of interest. (4)

Each organization has important information to share with groups and individuals worldwide. These organizations can compare experiences and learn from one another. Association with such a collaborative network helps the otherwise independent institution to accomplish its goals.

Zhang et al. (2002) agrees, stating that insufficient communication is a problem for humanitarian efforts: 'The major challenge in current humanitarian assistance/ disaster relief (HA/DR) efforts is that diverse information and knowledge are widely distributed and owned by different organizations.' Organizations could engage in more efficient collaboration. 'One absolute necessity is a publicly accessible, searchable, and comprehensive database on humanitarian disasters and approaches to relief,' writes Mills (2005). Sharing information can allow better decision-making and prevent duplication of efforts (Mills, 2005). Lack of collaboration is a problem. Freely available collaborative resources could help provide a remedy.

For her Master's in Nonprofit Administration capstone project at USF, Annabel investigated the need for collaboration in a medical setting. More specifically, she surveyed organizations providing pediatric cardiac care in developing states. She asked, 'Is there a need for a web-based [collaborative] platform to serve the pediatric cardiac community working in developing countries?' She received overwhelmingly positive responses. NGO representatives noted that their organizations would benefit from not only the knowledge of other organizations' presences at any given time and location, but also from the sharing of experiences and expertise with similarlydirected organizations. Furthermore, the NGO representatives voiced a common desire to collaborate, which might help them to determine preferential methods of service delivery. Although organizations' competition for funding might still pose a challenge for collaboration, most organizations surveyed expressed enthusiastic interest in the development of a web-based platform for communication (Lavielle, 2011).

An online network could pull more all-nighters and multitask even more efficiently than Annabel. In response to the deficit in collaboration, Annabel is developing the Global Heart Network Platform (GHNP), a website to facilitate information-sharing between nonprofits and concerned individuals and groups. Organizations can log on to connect with one another or share information. Likeminded individuals and groups can log on to join the conversation and perhaps even contribute to their efforts, whether through information-sharing or financial support. The GHNP will serve as a hybrid of Idealist.org and Facebook, with a target audience of anyone concerned with pediatric cardiac care in the developing world.

International nonprofit organizations are often isolated by their competition for funding. This competition does not apply to Annabel's project: the Network automatically supports the efforts of medical nonprofits. She insists on maintaining her noncompetitive approach, even in terms of controlling the Network's development: 'I'm ready to hand this over to another organization, if they've got the money and skills, though I'd be sad.' The symbiotic relationship allows Annabel to work alongside other organizations and keeps the communication lines open (Lavielle, 2011).

'I'm not putting this away on the shelves,' Annabel says. Her thesis is not merely academic: she graduated in December of 2010 and immediately set to work. She estimates that the Network's development will cost, at a minimum, $300,00 and 8 months of work. On April 1-3, 2011, Annabel presented her platform at the Global Health and Humanitarian Summit at Emory University in Atlanta, Georgia. This summer (2011) lands Annabel in Geneva, presenting the GHN Platform at the 7th Global Forum on Humanitarian Medicine in Cardiology and Cardiac Surgery. This conference takes place at the University Hospital of Geneva in Geneva, Switzerland on June 20-22, 2011.

Save the hearts, and rescue the bodies. Log on at home, and connect doctors with patients worldwide. These are the missions of Annabel Lavielle and the Global Heart Network.

References

Forristall, Caryl. 'Heart Development.' Developmental Biology. University of Redlands. Gregory Hall, Redlands, CA. 1 Apr. 2011. Class lecture.

Lavielle, Annabel. The GLobal Heart Network Platform: Cultivating Global Collaboration to Bring Cardiac Care to All Children in Need. Global Heart Network: 2011. Not yet published.

King, Dennis . 'Humanitarian Knowledge Management.'Proceedings of the Second International ISCRAM Conference 1.1 (2005): 1-6. Print.

Mills, Edward J.. 'Sharing evidence on humanitarian relief Needs a publicly accessible, searchable, and comprehensive database.'BioMedical Journal 331.7531 (2005): 1485– 1486. PubMed Central: BMJ: Helping Doctors Make Better Decisions. Web. 19 June 2011.

Neirotti, R., 2004. 'Paediatric cardiac surgery in less privileged parts of the world.' Cardiology in the Young,14, 341-346. As cited by Lavielle, 2011. Zhang, Dingsong, Lina Zhou, and Jay F. Nunamaker, Jr.. 'A Knowledge and Management Framework for the Support of Decision Making in Humanitarian Assistance/Disaster Relief.'Knowledge and Information Systems 4.1 (2002): 370- 385.ACM Digital Library. Web. 19 June 2011.

Congenital Cardiovascular Defects: Current Knowledge: A Scientific Statement From the American Heart Association Council on Cardiovascular Disease in the Young. Vol. 115. (2007): 2995-3014.

'Hypoplastic left heart syndrome - PubMed Health.'National Center for Biotechnology Information. N.p., n.d. Web. 6 June 2011. *lt; http://www.ncbi.nlm.nih.gov/ pubmedhealth/PMH0002096/.

'Tetralogy of Fallot - PubMed Health.' National Center for Biotechnology Information. N.p., n.d. Web. 6 June 2011. http://www.ncbi.nlm.nih.gov/pubmedhealth/ PMH0002534/#adam_001567.disease.causes.

Please note that the stories at the beginning are fictional, but realistic anecdotes.