The founder of the Rumah Ramah Rubella community, Grace Melia, carries her first child, Aubrey Naiym Kayacinta, alias Ubii, at her house in Sleman regency, Yogyakarta, Thursday (3/8). Ubii was born with serious medical problems such as hearing, heart and brain disorders because Grace contracted rubella when she was pregnant.
Grace Melia, 28, had rubella when she was pregnant, leading to her oldest daughter being born with disabilities. Grace has since become active in speaking about rubella in public. She stands in the front line in the campaign against rubella.
When she was pregnant with her eldest daughter in 2011, Grace did not realize she had contracted rubella. The disease, which she contracted in the first trimester of her pregnancy, often made her dizzy, shiver and fatigued. There were red rashes all over her body. Grace went to a doctor but was not diagnosed with rubella.
Later, she was shocked when her baby, Aubrey Naiym Kayacinta, or Ubii, was diagnosed with disabilities and serious medical problems. “My daughter was born disabled,” Grace said in her home in Sleman regency, Yogyakarta, in early August.
At the time, she and her husband, Aditya Suryaputra, 32, were unaware that their daughter was born with congenital rubella syndrome (CRS). They were only suspicious that Ubii’s development was different from that of other babies. She was known to have heart abnormalities and had to have an echocardiography, or heart USG. “The test result showed that Ubii had a leaky heart valve,” Grace said.
This was not the only medical problem Ubii had. The doctor also found that Ubii’s brain did not properly send signals to the muscles in her body, resulting in stiff muscles. Under such a condition, Ubii’s motoric development was stunted. Currently, at five years old, Ubii still cannot stand on her own and cannot walk.
Ubii also has severe hearing loss. After undergoing a brainstem evoked response audiometry (BERA) test, it was found that Ubii can only hear sounds at a frequency of 105 decibels (dB), on par with the sound of an airplane or a lawnmower.
When Ubii was five months old, Grace found that she had CRS. At the time, the doctor that did a brain USG on Ubii asked Grace if she had contracted rubella during pregnancy. “That was the first time in my life that I had heard of rubella,” Grace said.
A blood test conducted several days later confirmed that Ubii had CRS. “My heart was completely shattered. I had no idea how to tackle the illness and was so afraid for her future,” Grace said.
Risen
Grace said that she was at her lowest point when she came to understand the condition that had befallen her daughter. Nevertheless, she decided to rise again. Instead of being embarrassed by Ubii’s condition and trying to hide it, Grace actively shares information about her daughter’s condition with others in the hope that other parents can learn from her experience.
“When I was ready to move on, I told myself that my experience should serve as a lesson for others,” Grace said.
If it were just the government and healthcare professionals that campaigned about rubella, people may not listen, Grace said. “Sometimes, people need real proof of children suffering from rubella. I need to show them that,” she said.
According to Grace, her experience shows that information on rubella is minimal in Indonesia. Many are unaware of the disease.
“When I was younger, I didn\'t know there was a rubella vaccine,” she said.
This is what has prompted her to campaign about the dangers of rubella. In 2013, Grace established Rumah Ramah Rubella, a support group for parents with rubella-affected children.
As of August this year, the Rumah Ramah Rubella Facebook group has more than 14,500 members. Besides serving as a medium for parents to share their stories, the community also actively communicates the dangers of rubella through meetings or seminars on rubella in Yogyakarta and Jakarta.
In 2014, Grace published her Letters to Aubrey book about her daughter. She also speaks at seminars on the dangers of rubella and writes on her blog, gracemelia.com. Grace uses her social media channels to campaign about the dangers of rubella, mainly through her Instagram account with around 19,000 followers.
When the government established the national measles and rubella vaccination program for children aged between nine months and 15 years in August, Grace was asked to become involved in the campaign. She appears in public service advertisements created by the Health Ministry.
Grace was also invited to speak at the Measles-Rubella Immunization Campaign launch attended by President Joko Widodo in Yogyakarta on Aug. 1.
According to Grace, the immunization campaign is not only about protecting children but also others, especially pregnant mothers.
“It is important to vaccinate girls so that they are protected later in life during pregnancy. So, parents need to think long term,” said Grace, who has won several awards for her activism in campaigning about the dangers of rubella.
