Agreement signed for quality, affordable treatment of congenital heart defect

The Patients’ Behbud Society for the Aga Khan University Hospital (AKUH) and the Pakistan Children’s Heart Foundation (PCHF) signed an agreement on Sunday to make quality and affordable health care available to kids with congenital heart disease.

Through this partnership, the PCHF will identify children in need of this specialised surgery and care and will help bear the cost of treatment along with the Behbud Society so that more kids from low-income families can access this life-saving treatment.

Hundreds of children are born with congenital heart disease in Pakistan every year, but few of them are fortunate enough to have their defect treated in the country or abroad. Pakistan has been facing a serious shortage of paediatric cardiac surgeons, which also results in a high mortality rate of children with congenital heart disease.

Former Pakistan national cricket team captain Misbah-ul-Haq, who is an ambassador for congenital heart disease, and cricket maestro Saeed Anwar were present at the signing ceremony.

“I am very happy that we are all joining hands for this cause that is so important and will save many precious lives,” Haq said at the ceremony at the AKUH. After the signing ceremony, Haq visited the paediatric wards, surprising and delighting the children undergoing treatment at the hospital.

AKUH Children’s Hospital Service Line Chief Dr Babar Hasan said: “Through this partnership, we will set up camps all over the country, do research and advocate for this cause on a national level. This is not a Western disease. The disease burden is the highest in developing countries like ours.”

PCHF Director Farhan Ahmed said that this partnership will bring life-saving treatment at the best health care facility in Pakistan to families across the country. “It is a matter of real prestige for our work to be recognised by the AKUH. We want poor children to be treated at a [proper] facility and be given the best care that a kid from an affluent family gets, and through this we are making this possible.”

One in every 100 babies born has congenital heart disease (CHD), and 60,000 babies in Pakistan are born each year with CHD, or what is commonly known as having a hole in their hearts. Of these, about 20,000 die within the first month if nothing is done to treat them.

CHD is one of the most common birth defects. Seventy-five per cent of all CHD problems can be corrected through surgery, and babies with heart defects can go on to become adults leading active, productive lives.

If it goes untreated, however, the survival rate of such babies is low, and if children with CHD are not treated, they remain unwell, underdeveloped and have to make repeated hospital visits.

AKUH has a dedicated unit for congenital heart disease that includes paediatric cardiac anaesthetists, cardiologists, intensivists, surgeons, cardiac perfusionists and physiotherapists, as well as specially trained nurses.

Early CHD patients have very subtle symptoms, such as irregular breathing patterns or immature growth, said Dr Babar, adding that children with these conditions might appear smaller than others of their age and not as strong.

However, because of limited awareness and access to quality health care, many patients are not diagnosed until they are older, making CHD complicated to treat. Each year the congenital cardiac programme team at the AKUH performs over 400 paediatric cardiac procedures. Seventy per cent of the CHD patients at the hospital come from families without financial means to afford the cost of outstanding surgical and medical care.