Ray of Hope

Seven-month old Devprasannaraju of Andhra Pradesh, India could have been like most children his age--carefree, innocent and alive to his being the joy of his parent’s life. Instead, he is a sickly, emaciated child who perhaps is only cued in to his parent’s constant worry and prayers for his health and well-being. The joy that he carried with him from his mother’s womb never managed to touch his family.

Devprasannaraju is the first child born of the Rao family. Much like a typical rural Indian family, there was much fanfare when Rani, Devprasannaraju’s mother conceived and excitement as her pregnancy advanced. “Tataiya” and “Bahma”, his paternal grandparents were eager to welcome the tiniest addition to the family. However, fate conspired otherwise. In her Devprasannaraju’s 7th month of pregnancy, Rani suffered from sudden high fever which was treated by routine medication as there did not seem to be anything out of the ordinary.

Devprasannaraju was born with extremely delicate health and had to be kept in the safety of the incubator and on oxygen for ten long days. The delayed celebrations of this birth never really took off. Regular fevers, cough and cold seemed to permanently afflict him. Visits to the local Government hospital had become a rule rather than an exception. Within two months of his birth, the physician at the Government hospital diagnosed Devprasannaraju with Congenital Rubella Syndrome (CRS) in addition to Acyanotic Heart Disease.

CRS is a group of physical abnormalities that develops in an infant as a result of maternal infection and subsequent fetal infection with rubella virus. Rubella, normally a mild, self-limiting disease characterized by rash and fever is vaccine preventable. It carries little morbidity and minor complications if contracted in childhood. But it often leads to serious and sometimes fatal complications in the unborn child when a previously uninfected woman acquires the infection early in pregnancy. The most common congenital defects are cataracts, heart disease, sensorineural deafness and mental retardation. Other eye anomalies due to rubella infection are microphthalmos (or a small eye ball), corneal opacities, retinal pigment epithelium changes and glaucoma - all of which have a high propensity to lead to blindness.

India today, shoulders the highest number of blind children in the world. The prevalence of childhood blindness is as high as 0.8 per 1000 children, 40% of which is preventable or avoidable. It is estimated that about 50,000 children are born blind from congenital cataract every year in India, of which at least 25% are due to maternal rubella.

The entire Rao family was grief stricken. The little sickly mite grew slowly, unable to keep pace with normal growing up. Eyes closed, his little heart laboured to keep his body alive. Understandably, the priority of the parents and the attending doctors at the Government hospital was supporting Devprasannaraju’s heart to perform normally. In the little glimpses that Devprasannaraju afforded his parents, Rani noticed his eyes were squinting but that was the least of her concerns.

When Devprasannaraju was five months old, a pronounced white spot was visible in both his eyes. It was only after the parents brought this to the attending doctor’s notice that Devprasannaraju was diagnosed with congenital cataract and immediate surgery was advised.

When opacity in the lens of the eye is present at or develops shortly after birth, the condition is termed as congenital cataract. In this condition the neonate’s immature visual system is deprived of the stimulation necessary for normal development which if left untreated results in permanent blindness in children.

While in adults suffering from cataract, surgery may be delayed for years without affecting the visual outcome; in infants, if the cataract is not removed during the first year of life, vision will never be fully regained even after surgery. Congenital cataract is the most important treatable cause of childhood blindness for which early diagnosis and referral, surgery by an experienced ophthalmologist, and long-term follow-up and management of aphakia or “eye without a lens” and amblyopia or “lazy eye” are essential. Constant medical bills were pushing the Rao family to the edge. Both the male members, working as labourers, were barely able manage subsisting. With no money to pay for eye surgery and follow-up, the family slipped further into despair.

Then one bright morning one of Rani’s neighbors told her about the specialty paediatric ophthalmology services offered by Sankara Eye Hospital.

Sharing the common dream of ridding the world of all curable and preventable blindness, Sri Kanchi Kamakoti Medical Trust (SKKMT) based in Coimbatore approached ORBIS, a global eye care organization to initiate a Pediatric Ophthalmology Program with their sister concern--Sankara Eye Hospital located in Guntur. A multi-year project was commenced to address the problem of refractive errors and childhood blindness in 3 districts of Andhra Pradesh state, namely, Guntur, Prakasam and Krishna.

Apart from building a competent team of paediatric eye care professionals and installing essential equipment in the hospital, the initiative focused on identifying the children who were suffering from avoidable blinding diseases from the remotest villages of the three districts and providing them with appropriate care in a child-friendly environment. The project also facilitated networking with local general practitioners and ophthalmologists to detect early cases of paediatric blindness and visual impairment for timely intervention.

After much persuasion Rani and Karunakara took Devprasannaraju to Sankara Eye hospital where Dr. Mahesh, ORBIS trained Pediatric Ophthalmologist examined the baby and informed the parents that the little one’s eyes could merely perceive light. Surgical intervention was necessary to restore his sight. There was risk associated with the surgery since the child also suffered from a heart condition. The high strung parents refused the surgery. Dr. Mahesh spent considerable time with Karunakara, Devprasannaraju’s father explaining that the treatment of cataract in children is a matter of urgency as early surgery increases the likelihood of better vision. His final words “Let your child see the beautiful world in this small life” did wonders. The parents decided to give Devprasannaraju the gift of sight.

Noting the economic infirmity of the family, Dr. Mahesh conferred with the management and a decision was taken to offer Devprasannaraju free surgery under the ORBIS-Sankara Pediatric Ophthalmology project. Devprasannaraju was operated for cataract in the right eye. Although it took only half an hour to successfully complete the surgery, the surgery itself was extremely challenging for the entire pediatric ophthalmology team, especially the anaesthetist due to his heart condition. The surgery was a success and thankfully there were no major post operative complications. The uncorrected left eye was covered with bandage and was subsequently operated after a month. Spectacle correction was also provided to Devprasannaraju.

The change in Devprasannaraju was astounding. A very emotional Rani says, “For the first time he noticed the fan rotating above him and chuckled with glee. He grabs at the toys his “Bahma” holds out to him. For the first time, my son has started to hold his own milk bottle and drink milk!”

The change has motivated Rani and Karunakara to ensure that they bring in Devprasannaraju for regular follow-up visits to Sankara Eye Hospital.

Dr. Mahesh who is the Paediatric oriented Ophthalmologist under ORBIS Project says, “In the last two years, we have created a good referral network in the three districts of Andhra Pradesh with the support of ORBIS. We have conducted trainings of general physicians and ophthalmologists on how to detect eye disorders in children. We have got many pediatric cases through our referral network. Satisfied customers through word of mouth have facilitated increased patient inflow. Devprasannaraju is one such patient.” Dr. Mahesh also consulted with a Heart surgeon in the Government Hospital about Devprasannaraju’s case. Within a month, the child is going to be operated free of cost under the Regional Cell for Children with Heart diseases at Government Hospital.

Had Devprasannaraju not been attended, he would have been left to destiny of misery. In his mother’s words, “We named our son as ‘Deprasannaraju’, which means God’s gift. God has gifted him with multiple diseases, but given us a ray of hope as well in the form of ORBIS-Sankara.”