It Was the First Time I Heard that Word, Rubella

Part 1.

When Grace Melia found out she was pregnant with her first child it came as a shock. She and her boyfriend Adit had not been seeing each other long and had never discussed marriage, let alone having children. She had just landed her first decent job and was focused on starting a “big career”. Nonetheless, in January 2012 Grace and Adit married and not long after welcomed their daughter Aubrey. Aubrey’s birth was a joyous time for Grace but it was ultimately short lived. Only a few months later, she found out that her daughter was born with Congenital Rubella Syndrome.

In 2011, shortly after graduating from university Grace took a position with a mining company in East Kalimantan, Indonesia as an English trainer for the company’s employees. The mining company was located in a remote part of the country that was only accessible by small plane and sometimes lacked running water. Grace’s days were filled with a hectic working schedule that often left her tired. One day when she began to feel sick, feeling dizzy and weak to the point where she could barely get up, she thought that it was a simply a result of being overworked and physically exhausted. On the third day of feeling sick a rash appeared. It was at this time that she finally decided to see a doctor. The doctor assured her that the rash was simply her body adapting to the new environment and recommended that she drink more fluids. A few days later the rash went away and she began to feel better. Not long after recovering from the mysterious illness though she learned of her pregnancy.

Resigning from her position with the company and moving back to Yogyakarta to be in a healthier environment and closer to better healthcare, Grace and her husband fell into their new roles as parents to be. They read any article they could find on parenting, took courses on breastfeeding and how to take care of a child, and learned about anything and everything that would help them to be prepared to raise their daughter. Grace recalls, “we wanted to raise the baby well despite the fact that we didn’t plan it”. They were nervous and excited and more than anything wanted to welcome their baby to the world. Grace would daydream of spending time with her daughter, “I would take her to the salon and we would go to the spa together, I would take her to school and take so many pictures of her first day.”

As the pregnancy progressed Grace made sure to take care of herself and the fetus, taking vitamins and meeting regularly with various OB/GYNs. Each time she met with a new doctor she told them about her time with the mining company and how she got sick with a skin rash to make sure that they were aware of her medical history. Each time she was told that the sickness was likely due to her busy work schedule and that her pregnancy was healthy and nothing was out of the ordinary.

On May 19, 2012 after 18 hours of labor, which eventually ended with a cesarean birth, Aubrey was born. After the long and difficult labor what Grace remembers of the birth is that, “after being born, Aubrey didn’t cry directly. A nurse had to pinch her just to get her crying”. Before leaving the hospital the pediatrician informed her that she had heard unusual sounds from Aubrey’s heart and gave her a referral to get an echocardiogram done. The doctor assured her though that it wasn’t really urgent unless Aubrey looked out of breath and/or seemed blueish, so it wasn’t until two months later that Grace brought her in for the test. The test results showed that Aubrey had two types of congenital heart defects, an atrial septal defect (ASD) and a patent ductus arteriousus (PDA). Luckily both seemed to be minor and didn’t require immediate medical action.

Despite feeling some relief on the relatively minor conditions, Grace felt that something about Aubrey just wasn’t right. “I didn’t know the right word to describe it. She just seemed different. Not her physical appearance, which was normal and okay. It was more her behavior, she used to cry a lot, A LOT. It was like she just didn’t feel comfortable, but I didn’t have any idea why”. Her mother assured her that everything was normal, Aubrey was probably just thirsty or needed to be burped or needed any number of other issues newborns need addressed. Deep down in her heart though Grace felt that something was wrong. She met with multiple pediatricians to try to find out what was happening, but each one told her that nothing was wrong with Aubrey and that her behavior was normal.

One day while at home with the baby, Grace noticed that she didn’t really react to sounds. She would never respond to noises or when Grace would sing or tell her stories. To test this Grace began to make louder and louder noises all with no reaction from Aubrey. She eventually popped two balloons right next to her, “She didn’t notice and she wasn’t startled, it was as if nothing just happened”. She returned to the pediatrician and insisted that a hearing test be conducted. The BERA test showed that Aubrey indeed had severe hearing loss. This news weighed heavily on Grace and she began to feel dejected “I was so lost. I felt like my world had just turned to pieces. There were times that I stopped singing and reading stories to Aubrey. What’s the point, she didn’t hear me.”

At five months old Aubrey had been diagnosed with congenital heart defects and severe hearing loss, but still Grace and her husband didn’t know why. It wasn’t until a brain scan was conducted after Aubrey failed to develop gross motor skills that they first heard the word Rubella. The brain scan showed that there was damage to her brain, calcification and microcephaly. The neurologist looking sorry asked her, ““Mam, did you have a Rubella screening done before you got pregnant? Were you infected by Rubella during your pregnancy?” Grace remembers, “it was the first time that I heard that fancy word, Rubella.” At the doctor’s urging Aubrey was screened for Rubella and both her IgM and IgG tested positive for the disease.

Congenital Rubella Syndrome (CRS) is an illness that is characterized by a series of birth defects which can include heart defects, deafness, brain damage, and other serious conditions. It is commonly passed on to a fetus when a mother contracts rubella during the first trimester of pregnancy. While the rubella vaccine can prevent transmission of the disease in Indonesia at the time the vaccine was not readily available and was not part of the routine immunization schedule.

Finally learning of her daughter’s condition Grace felt angry and confused, “I didn’t really know how to describe it. I blamed God, that I can remember. I was angry, upset, and furious. Why me? Why my daughter?” This anger spilled into fights with Adit as they both struggled to make sense of their daughter’s condition. “Adit and I had so many fights out of despair. We fought a lot because we didn’t know what to do. We needed to express our anger, but we didn’t really know how to channel it, so we were projecting our anger onto each other.” Thankfully after some time they were able to come to terms with their situation and embrace the challenges of raising a child with CRS together, “Thank god we moved on. Our family finally embraced the situation. If I think about it Aubrey’s condition has, in fact, made my relationship with Adit stronger. It has pushed us to stay together, to work on things together, to be more solid, and to be better as life partners.”

Aubrey has been diagnosed with severe hearing loss, cerebral palsy, global development delay, and mental retardation. While it has been over five years since Grace learned about her daughter’s CRS, each day presents its own unique challenges. Everyday Aubrey needs help to do basic things like getting dressed, getting bathed, and being fed. She does not move well on her own so she must be carried in many cases, “now it’s getting more tiring because she’s getting heavier, about 16 kgs. She feels heavy not only because of her weight, but also because of her cerebral palsy which sometimes makes her very stiff or gives her spasms.” In addition to the physical challenge it is also mentally taxing taking care of a child with CRS, “Sometimes it’s mentally exhausting especially when she has a tantrum. I understand that it’s because she doesn’t know how to speak for herself, to express what she wants, but still sometimes it makes us confused and exhausted dealing with her when she’s angry.”

Since being diagnosed Aubrey has attended physiotherapy on a regular basis to help her learn to move. The physiotherapy sessions while frustrating at times for both Aubrey and her parents, frequently leading to tears, has helped her to develop important motor skills. At the age of three Aubrey underwent surgery to have cochlear implants to help her hearing. Following the surgery she showed a marked improvement and learned to crawl. Her progress has been slow but steady due to the support from her family, “raising a physically disabled child with mental retardation is very challenging, but we will keep fighting.” Now almost six years old Aubrey is learning to stand on her own and regularly plays with her younger brother Aiden. It’s progress like this and special moments, “When I lift her and she leans her head on my chest. When she approaches me and sleeps next to me all by herself, not because I lift or move her. When I tickle her and she giggles hysterically”, that reminds Grace of why she keeps fighting.

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