When Megha was born 4 months ago in a small village in Meghalaya close to the wettest place on Earth along the Indo-Bangladesh border, little did she know that she would be flying 10000 miles across oceans to get the best treatment in the world by the nicest team of Doctors to undergo a unique surgery that would give her a chance to see the world and all its beauty.
I first heard about Megha in November and suggested to a common friend that we at AarogyaSeva might be able to help. Both Ted and Adithya were skeptical and did not want to make false promises to Megha’s parents. I assured him that we will do all we can to ensure she gets the best treatment available. She immediately reminded me of Ritesh. Ritesh’s parents had struggled for more than 6 years and had almost given up hope when I met first met them. When I told David and Mary about how within 6 months from that meeting, the boy from Assam had undergone a cochlear implant almost exactly a year ago on January 2nd 2015 from one of the best ENT surgeons in India at the best facility in Delhi, they were confident and hopeful.
Megha’s parents David and Mary Khongmawloh are leaders in their community. They have faced many challenges as differently abled parents but their story deserves a separate post in its own right.
David has glaucoma and Malignant hyperthermia. His daughter, Megha Sophia was diagnosed with Axenfeld Rieger syndrome which is an extremely rare genetic disorder. One of the characteristics of this syndrome is congenital glaucoma. This is a serious condition which increases pressure inside the eye and if left untreated will cause blindness.
Both David and David’s mother lost their vision. After two generations of this outcome, David was determined to prevent that fate for Megha. With the advancement in medical technologies, surgery became an option which would give Megha a chance to fight the glaucoma.
The challenge, however, was to provide the anaesthesia to perform the surgery. As simple as it may sound routine anaesthesia was not possible because little Megha could have Malignant Hyperthermia.
Malignant Hyperthermia is an inherited disorder that is triggered in susceptible individuals primarily by volatile inhalational anaesthetics. It is a life threatening clinical syndrome of hypermetabolism involving skeletal muscles.
AarogyaSeva: Global Health Volunteer Alliance and our volunteers are proud to play a small role in making Megha’s journey to sight possible by bringing together the team of doctors who performed this surgery are providing follow up treatment.
When I reached out to our network of AarogyaSeva volunteers, I was confident we would find experts willing to take up this challenge and help Megha. Within three months of initial contact on January 5th 2016 Megha’s surgery was successfully completed.
The team took special care with extensive preparation and planning. They went the extra mile and even had all the filters replaced in the Operating Room to make sure no remnant anaesthetics from previous surgery would cause any reaction.
Dr James D Brandt, Director of Glaucoma Service and Professor at UC Davis, Sacramento was the chief surgeon performing Megha’s surgery. I reached out to him and he readily agreed to treat Megha. He also connected me with the anaesthesia team headed by Dr Ravula to make sure Megha got the best available treatment. Sharon from Dr Brandt’s office was also very helpful in arranging the appointments and follow ups. Special thanks to Ronald McDonald house and their volunteers for their generous hospitality.
Dr Niroop Ravula, assistant clinical professor, specialist in pediatric anaesthesiology/pediatric cardiac anaesthesia at UC Davis and director of medical emergencies in Pediatric Anaesthesia, had no hesitation is agreeing to take up this challenge. He quickly put together a team of experts to plan IV anaesthesia for the surgery. He had a MH kit ready just in case of an unexpected emergency.
Throughout the process Megha has always been a resilient and brave patient. It somehow seems like she is a lucky charm guiding us all through the entire process including the challenging US Visa process with hardly any difficulties.
Megha still has a long way to go with her follow up treatments. I sincerely thank everyone who was a part of this process. If you would like to help her or other needy patients click here to donate or here to volunteer. You can also email email@example.com.