The twins, Shaista and Shazia
Four months into her pregnancy, Mdm Siti Nurhafizah (Fiza)’s doctor had noticed that one of the twins she was carrying was smaller in gestational size than usual. Further blood tests detected abnormal blood flow from the placenta to the baby.
Subsequently, Mdm Fiza had to go for an ultrasound scan three times a week to monitor their development. At 28 weeks of pregnancy. Mdm Fiza’s heart sank when her doctor broke the news to her. “He told me that one of my twins only had a 20 percent chance of survival. I had to undergo an emergency caesarean section to save one of my babies. I broke down at that moment. I could not bear to lose any of them,” she said. Fortunately, Nur Dina Shazia, the smaller of the twins, weighing only 900 grams at birth, survived against the odds. She was born with retinopathy of prematurity, an eye disease affecting premature babies, which may lead to blindness in serious cases. Her condition was successfully treated after an eye surgery during her 2-months stay in the Neonatal Intensive Care Unit (NICU). Her twin sister, Nur Dina Shaista, was also a Very Low Birth Weight (VLBW) infant, weighing 1.2 kilograms at birth, and stayed in NICU for four months before her discharge.
VLBW infants weighing less than 1.5kg at birth have a lesser chance of survival and are at higher risk of suffering from further complications. Double After their discharge from the hospital, Mdm Fiza and her husband, who also have three elder children, had to monitor the girls closely for signs of Global Developmental Delay.
A significant delay in two or more developmental domains affecting children under the age of five years is termed Global Developmental Delay.
Health and developmental challenges
Mdm Fiza has been proactively bringing them for therapies since they were toddlers so they could catch up with their peers. Still, she worries about Shazia’s literacy skill which is not on par with other children of her age and her hearing difficulties. Shazia and Shaista used to suffer from asthma attacks once every two to three months, which have gradually become less frequent as they grow older. Every six months, Mdm Fiza has to bring them to National University Hospital (NUH) for hearing and vision assessment and follow-up on their asthma condition
Journey with Club Rainbow
Their doctor and medical social worker from NUH referred the family to seek help from Club Rainbow when the twins were 1 year old. On one occasion, when the twins were hospitalised for bronchitis, triggered by a change of their milk powder, Club Rainbow stepped in to provide support and relieve the family’s financial burden by providing them with diapers as well as milk powder that is suitable for the children's condition.
The family is then further supported with monthly food rations. When the children reached schooling age, they are also supported with annual bursaries, to ease the family's financial burden. Ever since they were pre-schoolers, Shazia and Shaista have been actively participating in various social integration programmes, including drama workshop, excursions to KidsStop and Night Safari, Equine Tour (horse riding and stable tour experience), and more.
One of the most memorable events for them was a Christmas lunch event at a hotel, sponsored by our corporate partner. It was their first dining experience at a hotel, and the ambience and presentation of the food left a vivid impression on them. Mdm Fiza particularly enjoys family bonding events like outings to the zoo. She also looks forward to receiving useful gifts for the girls like new school bags under our yearly “Back to school” programme.
Since trying out Hip Hop dancing under our Arts Development programme in 2019 and having the opportunity to perform at the opening concert of Dreamseeds Arts Fest, the twins found a common passion in Hip Hop dancing. When asked about their dreams, Shazia replied without hesitation, “I want to be a Hip Hop singer!”
“I want to be a Hip Hop singer too! I also want to be a firefighter so I can save people,” exclaimed Shaista. Both of them are recipients of the Talent Development Fund, a grant to encourage our children to pursue their interests in a non-academic area. Mdm Fiza plans to utilise the grant to pay for Hip Hop dance lessons during the June school holidays.
Taking care of a pair of twins with medical conditions and her three elder children is no easy task. The emotional and counselling support Mdm Fiza receives from her Club Rainbow social worker, Sylvia, helps her to cope with her journey as a caregiver and her caregiver stress. Sylvia checks in regularly with her and often gives useful suggestions such as how she can support her elder son who would be taking his ‘N’ level (even though he is not a beneficiary), as well as to ensure she does not neglect her own self-care by setting aside her “me-time”, and how she can set aside time to go on dates with her husband to strengthen their marital relationship.
Her pride and happiness “With the support from Club Rainbow, I feel much less burdened,” said Mdm Fiza. “Having twins meant double the trouble but also double the happiness for me.” The twins makes her proud in their own ways. She shared that Shazia who once refused to speak in Malay recently surprised her by singing Malay songs while Shaista is advanced in her reading ability. Her wish for her children is simple. “I hope that they can get along well with their friends, be happy, and be who they want to be.”