Life with Ariq Life with Ariq - and Aids

Heartbreak as their adopted baby has Aids

MR Bani Buang and his family still insist the baby is God's gift to them. That's despite the five-month-old they want to adopt testing positive for HIV, the virus that causes Aids, on March 16. That's despite the confirmation, on March 24, that he now has the disease itself, full-blown Aids. Initially, it was tough. But nothing's changed, the family says. Thariq, or Ariq as he is lovingly called at home, is still their special boy.

Said Mr Bani: "Our world came crashing down when the doctors from KK hospital told us that Ariq has full-blown Aids. We realised that this is not a nightmare which you can wake up from, it's real. It's a painful reality we have to face every morning."

The baby's Indonesian mother gave him up for adoption after he was born prematurely on Oct 19. Mr Bani, a 36-year-old firefighter with the Civil Aviation Authority of Singapore, continued: "He's a lovely boy and never gives us any trouble. He gets along with my two older children very well. Everyone treats him like a normal child. But now, we have to temporarily quarantine the two kids because they are down with a cold. According to Mr Bani, the quarantine is necessary because Ariq is especially susceptible to the common cold and little ailments because of his condition.

Said his wife, Madam Nooraini Abdul Rahim, also 36: "We have to tell our older children to take precautionary measures now."We have to explain to them that Ariq is different because he has Aids."For instance, we have told them to stay away from Ariq if they are feeling ill, so that they don't pass their germs on to their little brother."Also, they are to keep away from Ariq if he is bleeding and they have to inform us immediately." 

The couple have to take precautions themselves.For instance, they have to wear gloves while cutting Ariq's fingernails. Said Mr Bani: "I hate wearing the gloves. It's as though he's so dirty. "But I don't have a choice. We have to be careful." Lying quietly in his cot, surrounded by several soft toys and some cards from well-wishers, Ariq looked like any healthy baby. He gurgled and made little baby noises, eyes darting around actively. He likes looking at moving objects, like the ceiling fan and the television, said Madam Nooraini, who is working as a programme coordinator. Stroking little Ariq's cheeks with his hand, Mr Bani said softly: "Look at him, does he look sick to you? "Daddy heart pain, you know, Ariq? Daddy heart pain." The bond between the two was evident, for Ariq smiled happily when he was picked up. Mr Bani said proudly: "Do you know that he can already say 'mak' (Malay for mother)? And he's such a good boy. He never cries, unless he's hungry. "I don't take to children easily, but the moment I set my eyes on Ariq, I was captivated. "He immediately occupied a place in my heart."

Now, a week after Ariq's homecoming, the Banis are more in control of their feelings after initially struggling with the news of his medical condition. Said Mr Bani: "There were times when we thought that we would not be able to cope. My wife cried many times." Mr Bani added that he also broke down when he thought of what Ariq was going through. But he did not do this in front of anyone. Not even his wife. "I knew that I had to be strong. If I cried in front of them, everything would crumble and fall apart."Right now, they are taking one step at a time, and Madam Nooraini insists that life goes on as normal for the whole family. They said that doctors have told them that, without medication, Ariq could live only for about two years.But, with medication, he could live up to five years.

As she fed little Ariq his milk, Madam Nooraini said: "He has a good appetite and he's responding to the medication very well. He has also gained some weight. That's good news for us. "Ariq is very special to us. His real name is Nurman, but we call him Thariq which roughly means 'morning star which comes knocking on the door'." Then, after a pause, she mumbled softly: "But we might have chosen the wrong name, because the morning star does not stay for long. Like him."

 

Welcome back cards from older children

AS soon as the Banis' two children - Thaqif, 10, and Wati, eight - knew Ariq was coming home from hospital, they made "welcome back" cards for him. He is so much a part of their lives. Wrote Wati, who was adopted by the Banis six years ago: "I think you are going to be very happy when you are coming back." Thaqif, the couple's son, drew a picture for Ariq. It showed a man, with a light bulb beside him and the words "He is so clever". 

Therefore, it was with much anguish that the Banis had to isolate the two children when they were down with a cold. They had to stay away from little Ariq so he would not catch cold too. An Aids baby like him is more prone to infections. He could get lung infection, recurrent fevers, chronic diarrhoea, suffer from anaemia, malnutrition, kidney and heart problems. Said Madam Nooraini: "When the kids say that they want to read or sing to him, we take Ariq to their room for a while. My son will sing to him, and my daughter will read to him. They clearly miss playing with him." Said Mr Bani: "My son used to ask my wife to tuck him in at nights. But since Ariq came, he tells her to attend to Ariq instead." 

Support from those close to them has given the couple the strength to go on.Said Mr Bani: "It helps that our relatives and friends have stood by us all this while. We would never have made it without them." But there are times when even this support is not enough. 

Said the worried father: "Sometimes, when I see him staring blankly at the ceiling, with a glazed look in his eyes, I feel so helpless." It is as if he were deep in thought. He looks like he's thinking about what's happening to him, what's going to happen to him... and there's nothing I can do.

"I can only shower him with hugs and kisses when I see him like this." The couple said they have no plans to look for Ariq's natural mother. They see no point in doing so. Said Mr Bani: "I don't want to think about anything besides Ariq now."

 

ARIQ'S LIFE... SO FAR

Oct 19 : Born prematurely and called Baby B then. According to Madam Nooraini, his natural mother - an Indonesian - was in Singapore on a social visit pass.
Mid-Nov : The Banis meet Ariq's natural mother twice at KK Hospital. Madam Nooraini also meets the Indonesian woman a few times at the Indonesian embassy and twice at Singapore Immigration and Registration.
Nov 23 : After spending 35 days in hospital, Ariq is discharged
Dec 14 : Mr Bani and his wife take Ariq to KK Hospital for a routine checkup
Feb 22 : Ariq is warded because of low blood platelets. Doctors discover he has an enlarged spleen and liver, signs of HIV. They suggest an HIV blood test on Ariq.
Feb 26 : Ariq is discharged.
March 13 : The Banis take Ariq to the hospital for a scan of his liver and spleen
March 16 : Doctors tell the couple that Ariq is HIV positive. But they also say that being HIV positive does not mean that he has full-blown Aids, according to Madam Nooraini.
March 20 : Ariq is warded 10 days because of cough and diarrhoea
March 24 : The Banis are told by doctors at KK Hospital that Ariq has full-blown Aids
March 30 : Ariq is discharged
April 4 : The Banis meet social workers from MCDS to discuss the situation.

 

WHAT NOW?

FOR the time-being, Ariq will live with Mr Bani and his family. Until a decision is made by the Ministry of Community Development and Sports (MCDS) on whether they can adopt him.

 

MINISTRY SAYS

"MCDS is still conducting investigations on the adoption matter. A holistic approach will be taken in assessing the suitability and capability of the couple to adopt the baby. Factors for assessment would include the care arrangement for the child, the home situation and the financial capability of the prospective adopters. This is the first such case brought to the attention of MCDS for legal adoption and a thorough investigation will be conducted."

 

NO OFFICIAL WORD

The hospital cannot comment on Ariq's condition because it is bound by patient confidentiality not to release a patient's medical condition to the press. MCDS would also not comment on the baby's health.

But those days are behind them.

"We realise you can't change anything by getting angry," said Madam Nooraini, a tutor. "We
try to explain how the disease is spread instead of getting into arguments."

They have gone on TV and radio shows to relate their experience, hoping to reach and educate a wider audience.

In July, they launched a CD of songs and a telepoll to help raise funds for Ariq's medical expenses, and also for Action for Aids.

While they have spent much time and effort trying to change people's misconception of Aids, they are also painfully aware that their most difficult task would be inexplaining it to Ariqhimself when he grows up.

Mr Bani said: "There will be no secrets; there's nothing that he's notgoing to know. We are going to be very open. I want him to accept his life as it is."


 

'HE'S AN AIDS BABY': Ariq was five months old when he was diagnosed with HIV, the virus that causes Aids, on March 16, 2001. About a week later, doctors broke the news to his adoptive parents, Bani Buang and Nooraini Abdul Rahim. The couple say they had the option of giving up the baby, but decided not to do it. Ariq, born of an Indonesian woman, became a Singapore citizen on Dec 5, 2001.  
ANOTHER BLOOD TEST: Blood tests are routine for Ariq, but the pain is quite something else. He bawls while being held by Muslimah, the family's Indonesian maid at the KK Women's and Children's Hospital. He turns two on Oct 19 and has been responding well to a two-drug therapy, which costs about $300 a month.  
COMFORT HUG: Ariq, waking up from a nap, clings to Muslimah who willingly stayed on with the family to look after Ariq, even after knowing he has Aids.  
ARIQ'S DAD: Bani, a firefighter, spends most of his days off looking after Ariq in their four-room Bedok flat. He said: "I've been a uniformed officer for 20 years, so I'm strict by nature.. But Ariq has changed me. I'm now more relaxed and less angry. I believe in caning, but I would rather chop off my arm than cane Ariq."  
A BLESSING FROM GOD: Nooraini and Bani see Ariq as a blessing and God's gift to the family rather than a burden. Hospital officials had given them the option of giving Ariq up after he was diagnosed with Aids. Nooraini asks: "But how could we give him up? By then, he had already been with us for four months, and we had all fallen in love with him." Bani adds: : "We wanted to go ahead and adopt him and give him as much love as we can."  
MEDICINE TIME: Perhaps the only time when Bani and Nooraini are reminded that Ariq is different from other children is when they have to feed him the two-drug cocktail of Lamivudine and Zidovudine. The two antiviral drugs are used for HIV treatment. "We believe that medicine is just one part of the treatment for Ariq," says Bani. "Loving and caring for him is just as important."  
KISSES FOR HELLO AND GOODBYE: Ariq likes to greet visitors with a kiss on the hand, and blows kisses at them when they leave. Strangers who recognise him often stop Bani and Nooraini on the streets to ask about his health. The couple are encouraged by the public's acceptance of Ariq, but they say the real challenge is when Ariq goes to school: will he be allowed to go to school, and will his classmates shun him?  
PLAYGROUND CRUELTY: The playground may seem the most natural and happy place for a child, but that's also the place where Bani and Nooraini have heard some of the most hurtful words said about Ariq. They say some of the children would say things like "Don't go near him, he's sick", or "He's got TB". The couple say they no longer get angry with such remarks but hope to do all they can to help dispel such misconceptions among the public.  
ARIQ'S DAY: Ariq, Muslimah, and his cousin Sasha (left) on their way to the concert to launch a new CD of songs which the family put out to help raise funds for him. Thaqif, Ariq's brother, sings all the songs on the CD, which was made in collaboration with top producers and session musicians from Malaysia who volunteered their services after learning about Ariq's story.  
LITTLE SHOWMAN: The crowd of about 200 supporters broke into laughter when Ariq went on stage with Thaqif during the CD's launch. The plucky two-year-old, who is still learning to talk, almost stole the show from his brother, who has won numerous singing competitions.  
HE AIN'T HEAVY, HE'S MY BROTHER: Tears streamed down Thaqif's cheeks as he sang the song "Ariq", which Bani wrote to express his love for his adopted son. In the song, Bani said of Ariq: "You are like a beaming light that shines ever so brightly...And how would life be, when you are not with me? Should I just weep quietly?"  
FATIGUE WINS: Worn out after his checkup at the KK Hospital, Ariq sleeps as Muslimah gently strokes his hair. Nooraini says she still whispers into Ariq's ears every night: "We will take good care of you and will not give you up."