When M. Thooyavan and S. Sangeetha came to know that their yet-to-be-born child had Vein of Galen Malformation (VOGM), a rare and potentially fatal complication in the brain, they were shattered.
Mr. Thooyavan said it appeared as if the happiest moment they were expecting in their lives might turn out to be devastating.
Soon after the condition was diagnosed in the 30th week of pregnancy, the family began its pursuit to find a hospital in the country that offered treatment for the condiditon.
Facing a deadend after four weeks, he dropped an e-mail to a surgeon in New York, who had done procedures for VOGM. To the family’s surprise, the surgeon said a solution was available closer home. He asked them to contact Srinivasan Paramasivam, head of Neuro-Endovascular Surgery at Apollo Hospitals, who previously practised and taught at Mount Sinai Hospital in New York.
VOGM refers to a congenital condition, where blood from the arteries of the brain directly flows to the veins due to the absence of some capillaries in between, which help in slowing down the blood flow.
Dr. Paramasivam said the condition led to extra pressure in the vein, which in turn led to heavy flow of blood to the heart and lungs. “This forces the heart to work overtime to get blood to the rest of the body, and will eventually lead to congestive heart failure,” he said.
He said while the condition was rare with an occurrence of one in three million births, around 80% to 90% of the cases resulted in fatality either due to failure to diagnose the condition or due to lack of treatment.
Dr. Paramasivam said as the diagnosis happened relatively early, it provided room for planning the treatment post child-birth. In the 38th week of pregnancy, C-Section was performed.
Dr. Paramsivam said the complex non-invasive procedure should preferably be done at least six months after birth to minimise risks. However, in this case, the procedure had to be performed 48 hours after birth as the baby’s condition began to deteriorate rapidly.
Two catheters were inserted, one through the umbilical artery and the other through the jugular vein. While the former was used to perform the endovascular embolisation in the brain, the other was used to control the heart beat through a pacing monitor.
He said that extreme precision and care was required as any error could could completely damage the the delicate blood vessels of the two-day-old baby.
Dr. Paramasivam said through the pacing monitor, the heart rate was increased to 300 beats a minute. “Because the heart is beating so fast, the pumping becomes inefficient and results in blood flow to organs getting stopped for about 20 to 30 seconds,” he said.
This window was used to perform the embolisation by injecting a medical superglue at that part of the vessel in the brain with malformation to artificially slow down the blood flow.
Dr. Paramasivam said that such an embolisation procedure, along with cardiac pacing for VOGM, had been performed only a few times in the world, and it was most likely the first such instance in India. Stating that the baby would not need any further interventions for the problem in its life, he said that she was discharged ten 10 days after the surgery.
Suneeta Reddy, managing director, Apollo Hospitals Group, appreciated the entire team of doctors for successfully performing the procedure with excellent multidisciplinary collaboration.
Thanking the doctors and hospital, Mr. Thooyavan said that although the procedure was possible purely because of science and expertise, it was nothing short of a miracle for the family.