Trying desperately to save my baby

Reading about Baby Samantha () reminded me of my own daughter. At 7.52pm on Jan 20, 2010, my daughter was safely born into this world. She was a beautiful girl. After six years of waiting and a miscarriage, this baby came to bring new meaning to our lives.

After spending a night at the hospital, we were getting ready to go home. Before we were discharged, she was checked again by a doctor. I was shocked when the doctor told us that she couldn’t be discharged yet because the oxygen level in her blood was too low. I had to go home alone. I was so worried.

They took her into the Neonatal Intensive Care Unit (NICU) and the next thing I knew she was in critical condition. Her body had all sorts of tubes and wires attached to it and she was ventilated. I was in despair and couldn’t stop crying. My eyes were swollen. My friends started coming to the hospital and everybody tried their best to comfort me. They told me to be strong for Atikah Hannani, the name we chose for her.

The next day, Dr Anand, a newly-appointed paediatrician called us and told us about my baby’s condition. He said he couldn’t make a diagnosis as to why her oxygen level was low. But he suspected Atikah had a heart problem. Living in a small town in Bintulu, he was the only paediatrician and he had to make full use of the limited equipment in the hospital.

Bad news came one after another. The doctor said our baby might not survive. At this point, there was nothing else we could do but pray for a miracle to happen. I told myself not to give up because after almost 10 days in the NICU, Atikah had still survived. She had not given up yet despite the doctor’s prediction.

On Feb 1, I finally received good news. There was a paediatric cardiologist, Dr Martin from the Kuching General Hospital, visiting at the Sibu General Hospital. He was our only hope for a proper diagnosis for Atikah. But it was very risky to transport her to Sibu General Hospital which is almost 300km away.

Anything could happen along the way, said Dr Anand. After a long discussion, my husband and I finally decided to take the risk. That was our only chance. So, on Feb 2, Atikah was sent to Sibu General Hospital in an ambulance accompanied by a doctor and a nurse.

My husband and I, accompanied by our good friend, Cikgu Amir, followed her in our car. The journey was very tiring and long. That night, her condition worsened, she vomited all the expressed milk fed to her.

At the Sibu General Hospital, Dr Martin checked her and confirmed that she was having a congenital heart disease called TAPVD (Total Anomalous Pulmonary Venous Drainage). It was a rare heart disease and required immediate surgery. We tried to send Atikah to the National Heart Institute (IJN). Although my husband and I are both government servants, we failed to get a place for Atikah in IJN. I was very disappointed. The only choice we had was to take her to a private hospital.

The next day, arrangements were made to take my daughter to the Gleneagles Medical Centre (GMC). Once again we were informed about the risks involved in transporting her over. By then I believed that Atikah had a very strong determination to live. She survived before. Accompanied by a doctor from the Sibu General Hospital, Atikah and I flew to Kuala Lumpur.

We were sent to GMC and the following day she went through corrective surgery successfully.
 

That was the happiest news after Atikah was born. We were really thankful to God, Dr Lim Ming Kang and the whole team at GMC. However, that night I was called to the hospital. The doctor informed us that she was bleeding heavily. I was really scared of losing her and the doctor told us to keep our fingers crossed.

If she was strong, she would make it through that night. We were asked to go back and if we didn’t receive any call until the next morning, she would be fine. I couldn’t sleep that night. The fear of receiving a call from the hospital was overwhelming. However, she went through the night and in the next two weeks, she was recuperating well. She was discharged and we were getting ready to go back to Bintulu.

On the fourth night at my uncle’s house in Kuala Lumpur, Atikah couldn’t sleep and kept crying. She turned blue and we took her back to GMC. She was readmitted to the hospital for pleural effusion. The doctor had to poke her lung to drain out the liquid. The doctor reassured us that this was a normal scenario after heart surgery. But what seemed normal was actually a threat to her life. She was not able to drink milk because all the milk would be channelled to her lung and discharged through a tube poked to drain out the liquid.

She was forced to fast for about a month. In their attempt to save her, doctors had to do an explorative surgery. Her condition still did not improve. At the same time, we were running out of money. My husband had to take unpaid leave and I was on half-pay leave. The cost of her medical treatment was too high for us to afford. It reached RM150,000 already. After talking to the doctor there and with his help, Atikah was transferred to IJN.

On March 30, Atikah was warded in the paediatric ICU in IJN. The doctors discovered that she also had another problem – a blocked superior vena cava, the main blood vessel transporting blood from the brain to the upper abdomen. It was untreatable. After about a month there, her condition improved. The drainage of liquid stopped. But that was only temporary.

Then, her condition deteriorated. Her stomach became bloated and was getting bigger. With multiple problems, there was nothing much that could be done. Each time I prayed to God for the best. I never lost hope and always hoped for a miracle to happen again.

The doctor told us to be prepared for the worst. On Sunday May 30, the doctor told us that she had pneumonia, after weeks of a blood infection. Day by day, I kept on seeing her condition worsen.

On June 3, 2010, after struggling to survive for four months and 13 days, she left.

She passed away at 12.50pm. I was there by her side when she gave a smile for the last time before closing her eyes forever.

I felt so devastated but somehow deep down in my heart I have always believed that God knows what is best for her and for us. This is the best for her!

Mashitoh Hamzah