By Bismha Nayyer
In a crowded corridor of pediatric cardiology ward, a baby girl fell asleep in her mother’s arms after an episode of crying in pain. That girl was fifteen months old Noor-e-Haram who was welcomed on 20th May 2015 by old walls of her parent’s two room ancestral house in mohan pura mohalla of Rawalpindi. Jubilant on the arrival of their first born, on the account of their deprived economic conditions the thoughts of how they will feed her, cloth her and send her to school started to occupy their minds from the moment she opened her eyes.
The worry of providing to her was soon replaced by distress when initial signs of her illness started to show up.
Praying that not been able to suck milk and crying all the time is just her way of adjusting to the new world however with each passing day she was slipping from their hands.
Noor-e-Haram turned 2 months old and her nights became sleepless due to irregular heartbeats and a fever which tends to come back. For her symptoms of poor feeding, fast breathing and a tenacious fever, they were failed to get any diagnosis from local doctors. Not being able to pay a consultant for a diagnosis, they took their daughter to Pakistan Institute of Medical Sciences, a government hospital in Islamabad. From there her parents were steered to take her to Armed Forces Institute of Cardiology, Rawalpindi. Upon scrupulous physical examination and diagnostic tests, it was discovered that Noor-e-Haram was suffering from Ventricular septal defect (VSD).
Explaining the diagnosis in medical terms, ventricular septal defect is a type of congenital heart disease (CHD) which is a structural glitch in the heart present at the time of birth hence called congenital. VSD referrers to presence of a hole between the walls of left and right ventricles which causes the oxygen-rich and oxygen-poor blood to mix which is not normal.
After the diagnosis of her condition, the AFIC Cardiologist conveyed her family the estimated cost of the operation which was Rs. 375,000. Already under the debt of Rs. 30,000 and an immense emotional load, her parents could not ever contemplate to proceed for such an expensive surgery while the congenital anomaly of their daughter was a mirror of the fact that her mother was not being taken care of when she was carrying noor-e-haram as one of the leading causes of CHD is poor maternal health like exposure of gestational diabetes or not having vaccinated for infections like rubella virus which predisposes the fetus to these kinds of anomalies are enough indicators of poor income status. Earning skimpy amount of Rs 12,000 as a photocopier, his father couldn’t afford such luxury treatment alongside putting a bread on the table for his family of seven, including two ill elderly parents.
Pakistan has one of the highest rates of children with congenital heart disease in the world. Each year 40,000 -50,000 are born with this heart defects and Noor-e-haram was a needle in a haystack. It was only because of donors funding that HHF could exclude Noor-e-Haram from those children who die every year waiting in que of surgery!
Considering their financial crises and urgent nature of intervention, AFIC Cardiologist referred the case to Heartfile for health financing on 19 Oct 2016. After waiting for her conclusive test results, she was competitively assessed by HHF team on 24 Oct 2016. Based on many compelling reasons including urban poverty the case meet the merit for funding and the case was approved on the same day. After recovering from a chest infection, she was efficaciously operated on 07th Dec 2016 by the team of best pediatric cardiac surgeons.
As per protocol, the patient’s mother was followed up telepathically on 19th Dec 2016 after surgery in which she informed gladly that her stitches are removed and she was recovering fast.