JOURNEY OF A
Parents and family members often notice telling signs of a congenital heart disease at a young age of their children. When acted upon at notice, children have much many more chances of survival.
Challenges: There are many challenges at this step. First, traveling from one region to central Kigali, where the hospital and cardiologists are located, can be financially demanding. Second, the survival of a child depends on how fast symptoms are acted upon. Third, the discrepancy in healthcare coverage may dissuade some families from requiring several medical consultations.
How Vivo Cuore helps: Vivo Cuore actively works with its partners in Kigali to ensure that families who are in need for traveling costs are supported.
Once families travel to the offices of a cardiologist, the next step is the diagnosis. Within this step, the cardiologist takes the time to cover several tests and examinations in order to confirm a set diagnosis.
Challenges: In this step, there are also many potential challenges. First, cardiologists often have to use machines and other materials that do not present sufficient reliability to guaranty accurate diagnosis. Second, due to the lengthy list of children with various heart diseases, including congenital heart diseases, families may have to wait a significant amount of time before getting to the diagnosis phase.
In this step, children who are diagnosed with a congenital heart disease that requires cardiac surgeries are referred to international programs that welcome children from around the world for surgery. Rwandan cardiologist put their patients under a waiting list in the hop of securing a spot for their most urgent patients.
Challenges: At this stage there are many challenges. First, when children diagnosed with a CHD (“congenital heart disease”) are put on their cardiologist waiting list, it does not guaranty that they will be automatically be transferred in appropriate international programs. The waiting period may take several months. Third, some children with complicated cases of CHD can simply not wait for months to obtain cardiac surgery as their cases requires immediate assistance.
Once the case of a CHD is accepted for referral, the next step is to prepare the child and the accompanying member of the family for the travel towards the host country of the referral program.
Challenges: This steps requires many formalities and costs. First, the family of the referred child must obtain all the necessary traveling documents. It is often financially demanding, and many families require help. Second, at this stage, international partners must coordinate to ensure that there are accommodations and transportation for the child and its accompanying member once they arrive at destination. In effect, children must stay in the operating country for at least two weeks, in order for cardiac surgeons and other specialists to ensure that the surgery was completely successful. Third, international partners must also find a third party that welcomes the child and their accompanying member in the host country and guides them through the entire process. For most families, this is the first trip outside of Rwanda. Thus, a guide is an essential component once they arrive at destination.
How Vivo Cuore helps: Vivo Cuore’s core mission has been to support the referred child and his or her parent in all of their needs for traveling documents.
After the successful cardiac surgery and necessary post-operation check-ups in the referral country, the family can effectively go back home. Once they are back at home, the operated child must undergo regular check-ups with their cardiologist, to ensure that his or her heart has fully recovered.
Challenges: In some cases, the families may miss some check-up appointments. This creates potential risks for the resurgence of the congenital heart disease in the operated child. In this step, there may still be some financial challenges for lengthy travels from one region, all the way to Kigali.
How Vivo Cuore helps: Vivo Cuore is working with its partners in Rwanda to create a support program for families in need of financial support for traveling purposes, in order to guaranty that children do not miss their critical check-up appointments.