Photo Credits: Josh Wijaya. Story by: Geraldine Tan.
First Pregnancy
Like any first-time mother, Madam Suriati was full of excitement when she learnt of her pregnancy. During her first visit to the gynaecologist two months into the pregnancy, she was discovered to be bleeding and had to be hospitalised for further examination. When she learnt that she was bleeding severely and there could be a high chance of miscarriage, she broke down after hearing the devastating news.
“I was told to rest in bed as much as possible for the rest of my pregnancy. We were told that our baby had a low chance of survival after birth, and we should consider terminating the pregnancy. But we knew that we had to keep the baby.” said Madam Suriati.
“Up till the day of my delivery, the gynaecologist was still asking me to consider terminating the pregnancy. At 23 weeks old, the baby had only 25% chance of survival according to the doctors. It was just me and my husband. It was scary. We didn’t have anyone to talk to. They also told us to be prepared that even if he survived, he would be unable to walk or talk.”
Sufi was born in 2014, weighing only 620 grams and suffered from multiple complications due to premature birth. What followed was a 10-month stay in the hospital and multiple surgeries. To allow him to be discharged, a Tracheostomy surgery was performed. Sufi had to depend on an oxygen tube that was attached to the trachea tube inserted through his neck on one end, and a ventilator machine on the other end to help him breathe.
A few days after returning home, Sufi fell sick and became breathless. He was rushed to the hospital and ended up staying there for another month. For the first three years of his life, Sufi had to be rushed to the hospital whenever he was breathless. Hospitalisation became part and parcel of his life. As Sufi fell sick easily, Madam Suriati and her husband avoided any outings with him as much as possible.
The trachea tube was finally removed when he was four. Not long after, a surgery to correct his squint eyes caused his lungs to collapse during the procedure. The surgery was a success but the collapse of his lungs landed him in a high dependency ward. On the same night, when the medical team tried to intubate him and put him on oxygen support, Sufi struggled due to fear. His oxygen level then fell to 40. Lying motionless on the bed, he was in a critical condition. The medical team finally managed to put him on oxygen support and eventually revived him.
Following the ordeal in hospital, Sufi has to go for review every 6 months and had to be hospitalised for a thorough check-up each time. A year later, the doctor decided that it was safe to remove his trachea tube.
Over the years, Sufi recovered from most of the complications, except for a chronic lung condition. Today, he is active like any 7-year-old children and is able to take part in physical activities. But he has to be reminded to slow down whenever he gets too excited. Sometimes he still gets breathless. When that happens, he has to use the inhalers to help his breathing resume back to normal. At times when the inhalers didn’t help, Sufi would have to be rushed to the A&E.
Caregiver Stress
Madam Suriati’s job at that time required her to work shifts. When Sufi was admitted to Intensive Care Unit at birth, rushing to the hospital before and after her shift work proved to be difficult. Finally, she made the decision to resign so she could spend time with Sufi in the hospital in the daytime. Soon, the separation from her firstborn was taking an emotional toll on her.
“I was crying myself to sleep every night, hugging his playpen. On the eve of Hari Raya, it suddenly hit me that Sufi was not with me and I started to weep.”
“I felt terrible in the hospital, when I saw all the new mothers returning home with their babies, knowing that I couldn’t bring Sufi home. I would make sure that I visit him every day in the ICU and prayed for his recovery.” Madam Suriati said.
Being a jovial person, no one around her, including her family members ever suspected that has depression. Fortunately, her condition was detected by the hospital staff who then referred her to see a psychiatrist and to Club Rainbow for further community support.
When Madam Suriati was told by doctors that Sufi had to stop wearing diapers after a surgical procedure last year as it would hinder the healing process, she was worried as he had not been toilet trained. But he surprised everyone by achieving a new milestone. He was able to go to the toilet on his own after the procedure and did not go back to wearing diapers since.
On days that she feels her depression setting in, focusing on the achievements of her children gives her strength to carry on. She always look forward to meeting her social worker at least once a month.
“My social worker, Sandi, is the best person to share my problems with. Others around me might not understand what I am going through mentally and emotionally. Whenever I have my sharing sessions with her, she never fail to offer a listening ear while I pour out all my troubles and frustrations. She also gives me practical advice on how to cope with them.”
Extraordinary Times
When Sufi was hospitalised early last year, his father took time off to accompany him in the hospital. Very soon, he was retrenched by his employer due to his absence from work. Then came the pandemic.
With school closure due to the pandemic, many caregivers including Madam Suriati were subjected to greater stress in life. Doing household chores, and helping Sufi with his home-based learning was part of her daily routine. Not only did she had to care for the well-being of Sufi and his two younger siblings, but she also had to care for her elderly parents who are staying with her, especially her father who is diabetic. The sudden loss of income and uncertainties caused by the pandemic placed immense stress on Madam Suriati and her husband. Thankfully, Sandy, who has been following up on her case since Sufi joined Club Rainbow when he was two, stepped up on providing emotional support.
Positive coping strategies taught by Sandy such as journaling, have enabled Mdm Suriati to manage her stress and improve her emotional well-being, particularly during the trying period. Even though home visits were not possible due to Circuit Breaker measures, Sandi continues to render emotional support through regular phone calls and text messages.
To ensure that the family would continue to have food on the table during the Circuit Breaker, Club Rainbow carried on with critical services such as delivering food rations and necessities to them.
“We are thankful that Club Rainbow provided food rations, diapers and formula milk to us. Luckily for us, my husband managed to find a job just before the Circuit Breaker ended.”
Hope to Journey On
Day by day, witnessing the growth and development of Sufi from a preterm baby who had only a 25% chance of survival to the 7-year-old he is today is nothing short of remarkable in the eyes of his parents.
“Before learning about Club Rainbow, I didn’t know who to seek help from. Thanks to the Club Rainbow team, we know that we are not alone in this long-term battle with chronic illnesses.”
“We worry for Sufi all the time. What we can do is to provide the best for him so that he will not feel that he is different from everyone else. Every day, I pray that he will recover from his chronic lung condition. And eventually he will grow into an independent adult and be able to find a good life partner who will care for him when I am no longer around.” Madam Suriati said emotionally.