How I Became an Advocate for Families Affected by Congenital Heart Defects

By Hannah Almira Amora, Congenital Heart Defect Advocate & Former President of Let it Echo, Inc.

My Story

When my second son, Maven, was born in 2011, he was diagnosed with a congenital heart defect (CHD). His CHD included an atrial septal defect (ASD), a ventricular septal defect (VSD), pulmonary stenosis, and a right-sided aortic arch. Out of those conditions, we were informed that although his ASD and VSD may resolve on their own, his pulmonary stenosis would need to be corrected by surgery when he was older. And that correction would cost us around $20,000 USD – a significant amount for a young, working-class family living in Cebu City, Philippines.

When Maven was 4-months-old, he started developing deep blue skin, nails, and lips – symptoms that prompted us to revisit his cardiologist. These tet spells, which are caused by a lack of oxygen, indicated that he would need the surgery sooner – either when he turned one-year-old, or the latest, at age 2. However, two months later, another echocardiogram (his second since diagnosis) revealed that he had Tetralogy of Fallot or TOF since he developed a new defect, right ventricular hypertrophy, and consequently, he needed surgery as soon as possible.

Maven recovering from his surgery back in July 2012. Photo Credit: Hannah Almira Amora

As that reality set in, we began to prepare for the surgery. Based on our research, we needed to have 77% of our projected cost in hand in order for our son to be admitted for surgery. This amount doesn’t include the cost of flying our family to Manila, the country’s capital, where there were skilled surgeons who could address Maven’s case at his young age. To address this obstacle, we turned to our online friends and created a Facebook page, Maven’s Heart Fund, to see if we could raise sufficient funds. We also applied to a couple of foundations during this period; however, we were not considered poor enough (both my husband and I worked) to be qualified. Finally, we checked if our health care insurance would cover the surgery, but it would only cover 13% of the projected cost. As a result, we focused on our fundraising campaign. We were thankful enough to be blessed with a community who responded and supported us, and at the end of our 3-month campaign we had generated the amount we needed, and then some. 

 

Despite our family’s struggles, Maven was fortunate enough to get the care he needed. However, I recognize that not everyone can overcome the barriers we encountered. That is why, together with other CHD affected families we met during our fundraising campaign, we started Let it Echo, Inc., a community of warriors, survivors, and storytellers who provide hope and support to ailing CHD-stricken Filipino families through empowerment, education, and counseling.

13% of the projected cost. As a result, we focused on our fundraising campaign. We were thankful enough to be blessed with a community who responded and supported us, and at the end of our 3-month campaign we had generated the amount we needed, and then some. 

Speaking Up

Besides supporting each other as patient advocates, we need to collectively call upon policymakers and medical providers to do more to ensure that children and their families receive timely and quality care for CHD.

Below are my top three recommendations:

  1. Make CHD Treatment Broad and Inclusive: For the past five years of serving other CHD families, I have observed that the existing government programs for CHD patients are quite limited and exclusive. Limited because they only cater to children with certain conditions (specifically VSD and TOF), and exclusive because if a child has other congenital defects or if that child is beyond 10-years-old (for TOF correction) and 5-years-old (for VSD closure), he or she is ineligible for the program. As a result, these subgroups of children within the CHD community, along with those who have had previous surgeries and those who have RHD (and have similar problems and the same medical resources), are left to fend for themselves to get the essential surgery.

  2. Increase Access to Qualified CHD Medical Providers: During my son’s ordeal, I also observed that for a country with over 7,000 islands and 100 million people, only a handful private and government hospitals cater to pediatric cardiac surgery, and most of these providers are located within the country’s capital. As my family experienced, it is very expensive to travel to the capital and difficult to adjust to an unfamiliar setting without key family support present. Moreover, for emergency medical cases, there is inadequate transportation in place to move patients to the capital for more qualified help. I strongly urge the Philippine government to look into developing a transport system for medical emergencies for our archipelago of 7,000+ islands with limited CHD centers.

  3. Invest in CHD Health Workers and Research: Besides limited CHD health facilities, there is also a lack of qualified surgeons for a common birth defect. Perhaps this is a result of many healthcare workers – social workers, nurses and resident doctors – in the Philippines being overworked and underpaid. These dismal working conditions often lead to a lack of empathy of health care providers towards patients and families. Again, I urge the Philippine government to revisit its compensation packages of healthcare workers, encourage young medical students to venture further into pediatric cardiology, and invest in developing more centers of excellence that can treat pediatric cardiac cases. It is also important that medical providers and governments invest more in research and data gathering in order to get a better picture of the actual status of CHD (and RHD) patients and families and effectively match the right resources to the needs of patients.

Pushing Boundaries

At the end of September, I plan to attend the High-Level Meeting on Non-communicable Diseases (HLM on NCDs) taking place on the heels of the United Nations General Assembly at UN Headquarters in New York City. By participating in the HLM on NCDs as a civil society representative on Global Health Council’s delegation, I hope to learn best practices from other advocates in advancing the NCD agenda, network with individuals and organizations who can help me amplify our stories, and encourage more people to be part of a sustainable CHD ecosystem in the Philippines.

Hannah and Maven in June 2018. Photo Credit: Hannah Almira Amora