Real Life: My Baby has Multiple Brain Cysts

Every mum wishes for an uncomplicated pregnancy but unfortunately for Afita, that was not meant to be.

 

WORDS CHRISTEL GERALYN GOMES

 

It’s every mother’s worst fear that a complication might develop with her pregnancy. We’ve all felt the flutters of anxiety when the gynaecologist stares too long at the screen, or runs a routine test a second time, “just to be sure”. For many of us, it thankfully turns out to be nothing, but for the unlucky few, a nightmare of the worst kind begins. Such was the case for parents Vandel Lim and Afita Nurjayanti.

 

Good News!

When the pair first found out they were expecting, it was a flurry of joy and excitement. A trip to a gynaecologist in Kovan told them that everything was fine and that their precious little one, baby Vanden, would be due to arrive in the world in February 2016.

 

Unhappy Circumstances

Although the pregnancy was a dream come true for the pair, the circumstances surrounding it were trying from the beginning. Living conditions were not ideal as for reasons he would prefer to keep private, Vandel was sleeping in the living room of his parents’ house, and Afita could not live with him there. Vandel confides, “My parents’ house was too crowded. I was sleeping in the living room and my father was having issues and finding fault with everyone in the house due to a history of mental issues.”

 

 

Given the situation, Afita chose to leave her job so that she could move to Batam to live

with a good friend of hers who would take care of her as her pregnancy wore on.

 

 

Vandel committed to a commute every weekend so that he could be with Afita. “I would just travel to Batam every Friday night via a ferry from Harbourfront, and every Sunday night or Monday morning, I would travel back to Singapore for work,” he said.

 

The First Scare

On 17 November 2015, two months after Afita moved to Batam, her water bag began to leak, and she was quickly admitted to a private hospital in Batam. She was hospitalised for four full days, but at the end of it, doctors told her they had managed to stop the leaking and that she was good to be discharged. She went home on 20 November.

 

“My Water Bag Burst”

Three days later, after 9pm, Afita began to have severe pains and began leaking again. She was quickly admitted, but this time, the doctor told her that nearly all the water from her water bag had leaked and an emergency caesarean was required immediately.

Afita was alone in Batam through the entire ordeal as Vandel had left that same morning for work in Singapore. She didn’t have the money with her to pay for the caesarean and the hospital required a deposit of $2,000 to proceed. Vandel felt like he was going out of his mind in Singapore while Afita convinced a doctor at the hospital she was to act as a guarantor.

Vandel recalls, “I assured the doctor that I would arrive with the money the next morning as there were no more ferries at such a late hour. Luckily, he agreed. I couldn’t sleep that night. I found myself kneeling and praying for Vanden to pull through, as the doctor had shared that he was giving Vanden a very strong medication to keep him alive. Thank God Vanden survived!”

 

Baby Vanden Arrives in the World

Vandel was on the earliest ferry to Batam the next morning. “I arrived at the hospital without any control over my emotions and cried out as soon as I saw Fita. After a quick hug, I asked a nurse to show me to Vanden. He was so small inside the incubator… my fist was bigger than his tiny head. He weighed only 900g,” he said.

 

Financial Woes

Vanden needed constant care and medication. At the same time, the hospital required a large deposit to pay for this care.

“I started to ask my aunties and younger brothers for financial help. I also approached banks for a loan. The total fee for two months in the hospital came close to $20,000. We were running low on cash so Vanden had to be discharged, but the hospital assured us that he was all fine for a preemie. At the time, we were concerned about a bump on the left side of his head, above the ear. It also seemed to us that he hadn’t put on any visible weight during the two months under hospital care. He was only 1.2kg when he was discharged on 2 February 2016,” recalls Vandel.

 

 

While Vandel worried about finances, Afita was having trouble producing breast milk

since Vanden had been in the incubator for two months.

Her girlfriend, who at the time had her own four-month-old baby, came to her rescue

and provided Vanden with her own breast milk in bottles.

 

 

The couple also struggled with trying to get married as soon as Vandel’s divorce was finalised so that Vanden could get a Singapore passport and Vandel could put his name on his baby’s birth certificate.

 

A Swollen Head

At the same time, the couple noticed that Vanden’s head was quickly growing abnormally big. Initial visits to the hospital were unhelpful as doctors first brushed it off as nothing. Finally, a specialist confirmed that Vanden's head condition was serious and required immediate treatment that was beyond the scope of what the hospital could provide. “We were so upset about how the doctors handled everything,” said Vandel.” It became even more important that Vandel got a passport so he could be brought into Singapore for treatment.

Relief came only in May when Vanden’s passport was finally sorted and he was admitted into a hospital here in Singapore.

 

Multiple Brain Cysts

“The Paediatric Neurosurgery Head Consultant told us that Vanden was suffering from post-infectious Hydrocephalus with multiple brain cysts. Vanden's brain has suffered severe damage from the infection and he will be highly dependent on us throughout his life. Numerous surgeries were required and each would be life threatening for him, given his age and condition. My wife and I broke down. We fully understood the gravity of the situation but we were determined to go ahead with whatever treatment was needed. We didn’t have much room to consider finances at the time. Our focus was only to have Vanden pull through and get well,” said Vandel.

Over the next few months, Vandel went through six highly invasive surgeries, and while there were some big, nerve-wracking scares in between, he survived.

“As Vanden is not a Singapore citizen, he isn’t entitled to government medical subsidies that would make this situation a little more financially bearable. Vanden’s growth and development journey will require continual finance support,” says the tired father.

More medical attention is needed moving forward as the baby remains reliant on an NJ tube, inserted beyond his stomach, for his milk.

“To be frank, my wife and I are just living day by day, month by month, doing all we can to survive and stay positive about Vandel's progress, praying he will grow up well,” says the dad.

Vandel’s caring clients have helped him start a crowdsourcing page to raise funds for Vanden’s medical fees on GiveAsia. He is still asking for contributions.

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