Too Young To Die

The Burden of Children’s Heart Disease in Ethiopia

Many sub-Saharan African countries have high rates of heart diseases in children and young adults, including congenital heart disease and rheumatic heart disease. This is especially true in countries where primary prevention and post treatment has often been neglected as a large scale strategy. In Ethiopia, only one NGO is working on children’s heart disease showing the massive work the country needs to accomplish in the future. However, officials argue that the government is working to improve the situation. EBR’s Surafel Dereje spoke with stakeholders to discover the extent of the problem and efforts undertaken to ease the situation.

Nahomi Tesfaye, 6, was born in Addis Ababa with heart disease, which was discovered when she was 10 months old. Her mother, Alem Alemu, immediately took her to Yekatit 12 Hospital where the doctors discovered an opening in Nahomi’s heart. She was then referred to Cardiac Centre of Ethiopia (CCE), a heart hospital opened in 2009 inside Tikur Anbessa Hospital in Addis Ababa by the Children’s Fund of Ethiopia (CFE), the only NGO working in the area across the country.

In November 2013 Nahomi had a surgical operation at CCE although the first surgical operation was not fully successful. After two weeks she underwent a second operation, which was victorious. “Now she is fully recovered and attending her Kindergarten education,” Alem told EBR filled with excitement. “The cardiac centre and the Children’s Heart Fund have done everything at their capacity to save my daughter’s life.”

But many children in Ethiopia born with heart diseases are not as lucky as Nahomi. In fact, most children with heart diseases in sub-Saharan Africa have little or no access to treatment of any kind and cardiac surgical services..

Although there is little reliable data available concerning the prevalence of congenital or acquired heart diseases in developing countries, information obtained from Children’s Fund of Ethiopia reveals that an estimated 30,000 children are born in Ethiopia with heart defects and heart damage annually.

Such heart disease that affects children like Nahomi is also known as a congenital heart defect (CHD), which is a problem in the structure of the heart that is present at birth. In addition, 1-3Pct of school age children has symptoms of heart damage from Rheumatic Heart Disease (RHD), which is the most common acquired heart disease in children.

Studies conducted on the subject state that without proper treatment, about half of those born with significant CHD will die in infancy or early childhood, a third of them within the first month of life. For instance, according to a study entitled ‘Children’s heart disease in Sub-Saharan Africa’ out of the 50 million live babies born every year in Africa, as many as 500,000 will have significant CHD that will require expert care. Otherwise, about half will die within a few years of birth.

On the other hand, there are heart diseases that are acquired after birth, like RHD, which is entirely preventable. Currently, there are about 32 million children suffering from RHD, primarily in developing countries, resulting in 275,000 premature deaths each year, according to the World Health Organisation’s HRD Global Status Report.

The childhood experience of Habtamu Ayenew, now 28, demonstrates the dreadfulness of HRD. When he was an 11th grade student in Bahir Dar, he suddenly endured a heart attack. “When I return from school, I felt thirsty and began to drink water; suddenly I lost control of myself and passed out,” Habtamu explains. “I was then diagnosed with heart disease after a treatment at a hospital for about a month.”

Prior to being admitted to the cardiac centre, Habtamu followed up his case at Tikur Anbessa Hospital for six years. “In 2015, I underwent successful surgery that repairs the narrowness of my heart valve, and now I am fully recovered from my illness,” Habtamu told EBR recalling the kind of treatment he got from the cardiac centre.

“RHD is widely prevalent in Ethiopia. It is seen between five and fifteen year-old children who acquire it after birth due to poor living conditions,” Azene Dessie (PhD), medical director of the CCE, told EBR. Referring the booklet he prepared entitled ‘Cardiac Diseases of Children and Their Solutions’, Azene states that though there are no exact figures showing the status of the disease at national level, it is estimated that out of one thousand children in Addis Ababa six have RHD.

Wubayew Walelign (MD), advisor of the non-communicable diseases case team at the Ministry of Health (MoH) told EBR that until recent days, the major health challenges of the country were thought to be communicable and deficiency diseases. “But, as recent researches show, since the last two decades the extent and impact of non-communicable diseases is growing. Of these non-communicable diseases, heart diseases are significant.”

According to Wubayew, the most common type of heart disease in Ethiopia is RHD. “Based on recent researches conducted by Addis Ababa and Jimma universities, from various parts of the country, it is estimated that from one thousand children and youth within the age of 5-25, 20 up to 30 are thought to live with RHD.”

“Despite being a serious health threat to children, Ethiopia has given less attention to RHD,” Azene underscores. “One showcase for this is that Children’s Heart Fund of Ethiopia is the only nongovernmental institution working on children’s heart disease.”

Established in 1989, the Children’s Heart Fund of Ethiopia (CHFE) is a charitable, non-governmental and specialised organisation committed to healing children with heart diseases. According to Hiruy Ali, the director of the CHFE, a number of donors have supported the Fund, both from inside and outside the country, and has been providing care free of charge.

The main objective of the Fund is to support the cardiac centre, the first cardiac centre in Ethiopia, which Belay Abegaz (PhD) established, in addition to being the founder and Board Chairman of CHFE. Belay studied medicine in the United States and specialised in Paediatric Cardiology before returning to Ethiopia to practice medicine.

“For the last 28 years, more than 2,800 people including children get treatment through the support of CHFE. The treatment was carried out [by medical professionals of the centre, medical missions to who come to the country by upon invitations and sometimes by sending children abroad]” Hiruy explains. “More than 2,800 patients got all kinds of treatment including operation procedures since the cardiac centre became operational.”

After nearly three decades of service, the estimated money given to the Fund so far reaches about ETB1.3 billion, despite the serious challenge remains to be financial constraints. “We couldn’t accomplish all that we have without the good will of our partners and donors,” Hiruy underscores.

Wubayew says though the RHD and its impacts are vast, it can be cured. There are three levels of preventing RHD. “The first level is to cure the infection around tonsils at its early stages. The second level is following up the recurrence of infection around tonsils and curing it immediately. The third, level includes complicated surgical procedures, intensive medication and follow-up.”

Wubayew underscores due to the continuous nature of the treatment and the complexity of the process of screening out of RHD patients, the second level of treatment is not given evenly in all parts of the country although there are efforts to make it happen. “The third level of treatment is given by different voluntary medical missions from abroad and in recent years by the cardiac centre of Ethiopia. It is addressing less than 5Pct of the total demand even at the level of Addis Ababa. Therefore, thousands of people are not entitled to get this service.”

Hiruy says the contribution of the Ministry of Health is much greater for the success of the Fundand CCE. “The Ministry has assisted us in granting scholarships for trainees, facilitating the establishment of the cardiac centre as well as the manufacturing of consumable goods.”

Ethiopian born Saudi billionaire Mohammed Hussein Ali Al-’Amoudi covered the expenses of the construction of the cardiac centre. Another major partner of the fund is the Ethiopian Airlines that gave free tickets for the children when they travel abroad for treatment with their escorts as well as trainee professionals who were going abroad for training and volunteer missions that come to Ethiopia to conduct free medical services. Others such as Chain of Hope and Healing the Children (HTC) as well as different individuals and companies have helped the fund and the cardiac centre.

In order to maintain the financial stability of the Fund as well as the Centre, the Addis Ababa City Administration gave several plots of land free from lease. The fund, so far, has constructed three buildings, two of them are completed and the third one is on finishing stage. “When the buildings are fully rented, they are expected to cover up to 90Pct of the total budget of the centre,” Hiruy anticipates.

From the government’s side, Wubayew says there are some attempts to address the problem by building hospitals in St. Paulos Referal Hospital, Addis Ababa and Ayder referral Hospital in Mekele although these are not enough. “Therefore, there are plans to build other hospitals in different parts of the country.” EBR

5th Year • April 2017 • No. 49