The International Day of Persons with Disabilities observed on December 3 every year seeks to spread awareness on disability issues and mobilize support for the dignity and well-being of disabled people. Many people see disability as a divine punishment for sins in the previous birth and offer sympathies to the disabled. However, such an attitude causes immense pain to the mothers of children in this condition. These mothers dedicate their entire time caring for their ‘special kids’ and go through some moving experiences. Among them is Sabitta George, noted actress, model and singer, who is well-known for her role as ‘Lalithamma’ in the television serial ‘Chakkappazham.’
Sabitta left her medical profession and life in the US and returned to her home state Kerala on a mission. It was not to gain fame as a celebrity but to change people’s attitude on disabilities. She also urges medical professionals to adopt a kind attitude towards the disabled.
Sabitta speaks from her own experiences. For 12 years, she cared for her son, who was born disabled due to a medical negligence in the US. The celebrity shares her story with Manoramaonline.
Costly medical error
“My first delivery took place in the US. On the day before the due date, I realized that the amniotic fluid was leaking and we immediately went to the hospital. On admission, the staff there tried to induce pain. Considering my health at that time and the weight of the foetus, there was little chance for normal delivery. However, in many foreign countries such as the US, all options for normal delivery would be explored during the first pregnancy. C-section is the last resort,” recalls Sabitta.
Even though epidural injection was given, there was no sign of labour for 16 hours. But Sabitta felt that the foetus was becoming less active and there was variation in its heartbeat. She saw the variation on the monitor also and demanded the attention of the doctor. However, the midwife on duty ignored Sabitta’s demand and inserted the foetal scalp electrode. During the process, the midwife committed an error and cut the umbilical cord.
Sabitta began bleeding and the life of the infant was in peril. Sabitta and her mother, a nurse herself, pleaded with the midwife to summon the doctor. However, the midwife again did not listen to them and tried to hide her mistake.
“My baby struggled for nearly three hours as the umbilical lifeline was cut. Finally, our persistent demands brought the doctor and the C-section was performed,” says Sabitta.
The newborn had hardly any life and was shifted to the ventilator. “The doctors gave him a mere three days’ life as the internal organs were badly damaged. The functioning of both the kidneys and heart was affected. There was also clotting in the brain cells. The struggle during birth made my son a person with cerebral palsy,” explains Sabitta.
The baby lacked eyesight, speech and mobility.
From three days to 12 years
After delivery, Sabitta spent several days outside the ICU. “I had taken all precautions during the pregnancy such as having nutritious food with all vitamins to deliver a healthy baby. My son was indeed healthy till a few hours before his birth. But, after delivery, he was fighting for life in the ICU,” says the mother.
As doctors had predicted only three days’ life for the infant, they suggested to Sabitta to remove him from the ventilator afterwards. However, she refused. “We decided to keep him in the ventilator for a week. On the sixth day, two drops of urine having blood was detected and the baby was taken to NICU. Finally, after spending four months there, the baby came back to life. The baby named Maxwell – Max for short - subsequently lived 12 years with Sabitta.
Sabitta’s plea to mothers, medical professionals
Many people trivialize labour citing instances of delivery on the roadside and in houses. However, it is a very critical process, says Sabitta.
“I tell carrying mothers to react whenever they feel that the baby in their womb is not okay. What mothers feel would most often turn out to be true. Others may not take them seriously but mothers should firmly demand that the infant’s condition be examined by medical professionals,” she says.
Sabitta also wants medical professionals to change their attitude. “Medicine demands extreme involvement from those working in the field. Those in the sector should display compassion and empathy,” feels Sabitta.
Support system in the US
Sabitta was fortunate to have a good support system for the disabled in the US. “Disability isn’t considered a punishment for sins in the past life in the US. People also don’t stare at disabled kids and mothers there,” she says.
“Max had a pleasant face. I believe he was a gift of God. His birth was the most happy as well as a sad event in my life,” says the mother.
“Such kids teach us a lot. I learned patience and compassion from Max. It took an hour to feed him 10 drops of liquid food. Any haste could make him choke on the food. When he was two years of age, a tube was inserted to feed Max. He was fed through the tube till he passed away,” recalls Sabitta.
Only liquid food could be given to Max. As his kidneys were damaged, Max took only fat-free milk, watermelon juice and grape juice.
Five years after Max’s birth, he had a sister, Sasha. To avoid Max’s fate, she was delivered through caesarean at eight months. “Sasha loved Max. I could dedicate all my time to Max because Sasha too sacrificed many things. When I spent all the time with Max in hospital and at home during his last days in the ventilator, Sasha told me not to worry about her and look after her brother. Her words gave me much courage and support,” says Sabitta.
An angel named Chella
To take care of Max, Sabitta was helped by Chella, a Mexican lady. “She had a very long name but we called her Chella. She couldn’t speak English and I didn’t know Spanish. Still we took good care of Max. I learned from Chella that language or nationality was no barrier to help others during a crisis,” says the celebrity.
“When God throws us a big challenge, an angel too would be sent for our help. I realized this truth thanks to Chella,” reveals Sabitta.
Disabled kids should not be confined to their homes, says Sabitta. “Max studied in a normal school in the US as the facilities there are extremely disabled-friendly. Apart from a special needs classroom, the school buses have ramps,” she points out.
In school, Max was cared by Miss Hedda. “She was a good companion for Max. The curriculum in the US also stresses caring for the disabled. Society too is very considerate without being sympathetic. It is a disabled-friendly atmosphere,” says Sabitta.
Max's Home Foundation
“Training to bring disabled children to the mainstream should start from an early age itself. Changes are needed in the educational system for this. Other kids should be familiarized with the needs of their disabled classmates. Max was taken to schools where I worked as a volunteer and the students there read him stories. Though he could not walk or talk, Max provided an opportunity for the other kids to understand and accept the disabled,” says Sabitta.
In order to realize her plans to support the disabled, Sabitta registered a foundation named ‘Max's Home’ in the US. Under this project, medical equipment is distributed among disabled people in Kerala. “We never offer money, but our volunteers identify the particular need and supply items such as specialized wheelchairs, waterbeds, breathing equipment and hearing aids,” she informs.
Funds for the foundation are provided by Sabitta from her savings and with the support of friends. “We don’t carry out any regular fundraising events. But good hearted friends who know Max give donations based on our needs. Our activities are shared on a Facebook page ‘Max's Home’,” she says.