Bravehearts of the Foundation: Navinasri
July 8, 2020 | Contributed by R Srivatsan
Navinasri is the second child of Sumathi and Yeasu Raja Sivanandham from Thanjavur in Tamil Nadu. She was born on 10th December 2015 in a government hospital in Thanjavaur. Currently she is 4 years old. She has an elder sister (6 years old) and a younger brother (who is 2 years old.) Her elder sister is studying in 1st standard in a Government school.
The parents were very happy at the birth of their second child. Everything was normal till Navinasri turned 5 months. Her mother noticed that she had breathing difficulty and she turned blue. Naturally this worried them to a great extent, and they rushed to a Government medical college in Thanjavur. The doctors examined her. She was also found to have bluish discoloration of the lips so an Echo was prescribed and completed.
She was found to have a complex congneital heart defect, Tetralogy of Fallot with Pulmonary Atresia Type II, with a VSD (hole in between the lower chambers of the heart). Also, the main blood vessel (the Pulmonary Artery) connecting the right side of the heart to the lungs was absent.
She required open heart surgery to cure the defect. The news that their little child had a complex heart defect came as a shock to the parents. Especially seeing as they had never encountered such a health scare ever with their other children.
The Government hospital in Thanjavur did not have facility to conduct open heart surgeries in children. So, the family were referred to private hospital in Chennai for further treatment.
Sumathi and Yeasu Raja had faith in the Almighty. They borrowed a sum Rs 5000 from their relatives and proceeded to Chennai with Navinasri. When they reached the hospital, an echo was repeated, and diagnosis was confirmed.
The doctor told them that the defect was extremely complex and there was no point in operating the child. The parents were completely shattered and returned back to their native place.
With each passing day, the child’s condition worsened. She was being shown at the Government hospital and the prescriptions of medicines kept coming. The respite was temporary. As she was growing up, she had difficulty in walking. Every time she had a problem, her parents used to take her back to the hospital in Thanjavur for treatment. The distance of the government hospital from their village is around 30 kms.
It was a great stress on the family. But, Sumathi never lost hope. She had the firm belief that her child would survive. And it’s on this strong hope and will of the mother, that her daughter was able to fight.
In August 2019, GKNM Hospital had conducted a screening camp in Thanjavur Medical College. Navinasri was seen by Dr Vijayakumar (Pediatric Cardiac Surgeon) from GKNM Hospital. The diagnosis was the same, but it was also seen that her branch Pulmonary Arteries were very small.
Her parents were told that she needs to undergo two surgeries to cure the defect and save her life. They were asked to come to Coimbatore for the surgery. In November 2019 Navinasri was admitted at GKNM Hospital for her first surgery.
As the branch Pulmonary Arteries were small, Dr Vijayakumar decided to do a Pallative surgery called Modified BT Shunt. In this surgery a tube is placed between a branch of Aorta and the Right Pulmonary Artery so that more blood goes to the lungs for purification. The surgery was performed with help from the State Government Insurance Scheme.
Navinasri was on constant follow up. This year in June, amidst the lockdown she developed breathing problems. She was admitted at Thanjavur Medical College. The treating doctor got in touch with Dr Vijayakumar at GKNM Hospital. Navinasri was shifted in an ambulance to GKNM Hospital in Coimbatore.
She underwent Echo and CT Scan. Both the investigations showed the presence of a clot in the previously performed BT Shunt and the Right Pulmonary Artery. Also, there was a presence of a large abnormal blood vessel supplying blood to the Right Lung. This abnormal blood vessel is called MAPCA. The hospital charity had waived off the investigation charges.
Dr Vijayakumar was of the opinion that Navinasri required the second surgery urgently so she was admitted into the hospital on 7th June 2020.
Yeasu Raja Sivanandham is a labourer with a monthly income of Rs 5000. The cost of Rs 250,000 was too high for the family. Also, it was not possible to operate under the Government Insurance Scheme, as Navinasri had undergone a surgery less than a year ago with help of the Government Scheme.
Of late Yeasu Raja has not been keeping well. He has been getting seziures. Dr Vijayakumar reached out to Genesis Foundation for help. The family managed to raise a sum of Rs 34,038 towards the surgery. Their friends and relatives helped them. Dr Vijayakumar was gracious enough to waive off his professional fees to help the family.
Navinasri underwent a major open-heart surgery on 12th June 2020 after Genesis Foundation committed to supporting the case through their CSR partnership with Oracle India. The surgery lasted for eight hours. The following procedures were performed:
- The abnormal blood vessel (MAPCA) was attached to the Right Pulmonary Artery, a procedure called Unifocalization.
- The clot in the Right Pulmonary Artery was removed, a procedure called Thromboendarterectomy.
- The VSD (hole in between the lower chambers of the heart) was closed.
- A conduit was placed from the right ventricle to Right Pulmonary & Left Pulmonary Artery. The Pulmonary Valve was also recreated.
- The conduit and Pulmonary Valve were made using the pericardium of Navinasri using Ozaki Technique.
- There was no need for an external conduit, as the same was made by using the pericardium. Thus, considerable money was saved.
At 4 years, Navinasri is the youngest patient in the world to undergo an Ozaki procedure on the right chamber of the heart.
Her post-operative period was uneventful. She was discharged on 16th June in a stable condition. Her whole family is elated that their daughter finally has a new lease of life and their worries are behind them.