Because fewer than 3 percent of toddlers, children and infants around the world who were hospitalized for a congenital heart disease such as myocarditis received heart surgery, patients in need often died or survived only a short time. Even more agonizing for parents of sick children, there was no option to save those children’s lives unless they were quite old, as no heart-transplant organ for an 8-month-old child was available.
More than 140,000 children worldwide are diagnosed with myocarditis each year, but only about 1,000 receive an organ transplant. Until recently, doctors in the Netherlands devised ways to save these children’s lives that could only be seen in movies, even as an organ bank for other children ran out of donors and organ transplants became rarer.
A strategy pioneered in the Netherlands from the 1940s to 1960s allowed doctors to put children on bypass if there was not enough donor heart available for other patients. Doctors put these children on bypass if there was a large left ventricle defect in the heart, or a right ventricle defect that did not match with a donated organ.
In the past, two or three children could be saved every year through this strategy. But, in the past 30 years, as life expectancy in the Netherlands rose, and more and more children entered the care of doctors, there was not enough donor heart to keep up with the growth of the children.
The overall number of children who had bypass surgery fell from 3,650 in 1981 to 2,140 in 2012, according to the Netherlands Heart Foundation.
So, in 2014, doctors in the Netherlands and South Africa established the world’s first children’s heart transplant program that specializes in myocarditis, using all new transplants and trying to increase the number of donors.
The program began with four children, but in its first year the doctors transplanted 21 hearts and saved 14 children. It soon became a national priority. This year, only one other country, Spain, has set up similar programs in children.
Treatment and care has improved, and many children receive important life-saving treatment, as great progress has been made in the last three years. The Dutch initiative has also been copied by the U.S. and Argentina. The pioneering research and careful protocols are now in place, and all children in need have a chance to have a chance of being saved.
But this progress has not been enough to save nearly all of the children suffering from myocarditis. The average age of children who die is 14. Now, the Dutch Heart Foundation and other European organizations, which may have benefited most from the first children’s heart transplant program in the world, have recommended that doctors consider other options as well, such as new heart valves.
One in four people who have survived myocarditis die of heart disease in adulthood, so waiting for a donor heart on demand for children born with congenital heart disease may not be enough to save every child. This leaves a number of children in need — roughly 3,200 worldwide — who deserve a solution now, and a new option for their care in the future.
The children who survived myocarditis did not survive, however, with myocarditis. Most have died from cardiovascular disease. Their loss hurts more than the death of a 13-year-old can.
But they were treated in the Netherlands. Their lives, by some measures, were saved because of the nation’s pioneering work. Their children can be taken care of in a beautiful hospital, complete with gleaming water pipes and chandeliers, and stories of happy days and wonderful people, as well as stories of unbearable heart attacks and horrible hours.
That is why this essential work now is being curtailed. It’s time to invest in this community, to bring more people to join the national transplant list in the Netherlands, where there are now four heart transplant centers, and to give children around the world a second chance at life. Children are our future and their lives depend on us.