Touching Little Hearts

When she heard that her baby boy suffered from thalassemia, she was broken-hearted. For a brief period, there seemed to be no hope. Slowly, she ventured out to seek a ray of light for herself, but ended up becoming the Florence Nightingale to hundreds of thalassemic patients in the country, writes Vijaya George.

Khalida Khammas stepping up the fight against thalassemia

How does it feel to wake up one morning and discover that your six-month-old baby will need intravenous medication 12 hours every day for the rest of his waking life? What would you do if you learnt that he would need a blood transfusion once every three weeks for the rest of his life? How does it feel to discover that your little baby suffers from thalassemia?

"I was too shocked," says Khalida Khammas, when she discovered that her six-month-old baby was diagnosed with thalassemia. "I didn't even know what it meant until the doctor told me." At 22, even before the full implications of being a first-time mother had sunk in fully, Khalida was already coping with another bane of the Arab region -- thalassemia, a genetic disorder that reduces the haemoglobin content in the body and causes acute anaemia, which, if not treated, could be fatal.

 

Meet Ambareen, a 22-year-old thalassemic. My parents are first cousins. They brought me here when I was two. We are from Karnataka, India. Because my brother and I have thalassemia, we came here as there is good treatment out here. Those facilities are not there in India. My mom thought 1 or 2 transfusions and it would be fine. But it was life long. She was not happy. I changed a lot of schools because we have to take a lot of leave for this.   After school, I did a computer and secretarial course and got a lot of certificates for drawing. One day, I want to become a Fashion Designer. I want to go to India to study for it but they have no treatment there. So I can't go.   Earlier, I used to cry all the time that I was not normal But now, it's okay. This place (the Centre) is like my home for me. My second family! I work here now during the summer and they give me a salary.   We tried for bone transplant but my mum said if there is even 1% risk, then we'll die. Anyway, within 2 or 3 years a cure will come. So, we're waiting.

That was 12 years ago in the year 1989. Today, at 34 and mother to two more children, -- both healthy -- she has not just taught her oldest child to cope with the problem but has helped hundreds of other thalassemics and their families in the region to lead normal lives as well. In recognition of her service to society, Khalida was awarded the Dubai Quality Award for Excellence by His Highness Sheikh Mohammed bin Rashid Al Maktoum, Crown Prince of Dubai and UAE Defence Minister.

As a young girl, Khalida dreamt little, ordinary dreams. With a diploma in teaching from Emirates University in Al Ain, a job at Al Khansa School as Arabic teacher, a marriage to her first cousin -- as is the custom in most Arab families -- and a beautiful little baby boy whom they named Mohammed, she thought she was leading a full life. Until she stepped into the Thalassemia Centre at Al Wasl Hospital, Dubai with her son in 1989.

"The first six months, he was a little pale. But he was very active," says Khalida. "Then, when they told me he is a beta thalassemia major, I was too shocked. I didn't know what to do." But she didn't despair. Instead, she started getting involved with the activities at the Centre.

Seeing that the Centre with its white walls and pin drop silence would be a boring place for children, Khalida volunteered to brighten up the place. After all, a blood transfusion took a whole day -- from approximately 11 in the morning to 6 in the evening -- and if a child had to sit through it with tubes sticking in his hands every month, he may as well have a little something to cheer him up, she thought. Colourful pictures and cartoon characters were put up on the walls. Music played in the background. Toys were introduced. Birthday parties were hosted for patients. Gradually, craft activities were included and tours were arranged for the children inside and outside the UAE. Even the nurses donned colourful aprons.

"All these were personal efforts ... her personal contribution," says Dr. Essam Dohair, Specialist in Blood Diseases at the Thalassemia Centre. "She was determined to create a new environment for them and she did it. Earlier, children were fighting with their parents because they didn't want to come to the Centre for blood transfusion. Now, it's just the opposite," he says.

 

Najib Habib after a blood transfusion

20-year-old Ambareen, a patient at the Centre agrees. "She's like a mum to people. She'll do anything to cheer up the kids," says Ambareen.

Meanwhile, the Management at Al Wasl hospital saw in Khalida a woman dedicated to the cause of thalassemics. As mother to a thalassemic and in tune with the medical as well as social problems associated with the disease, the hospital realised that she would be a valuable asset to the Centre. In 1995, the hospital offered her a post they had never given anyone before -- the role of a social specialist. Khalida accepted the challenge, quit teaching and plunged headlong into the project.

I wanted to teach parents and children that yes, they do have this problem. But they have to learn to live with it like normal people," says Khalida. Talking to parents isn't half as easy as interacting with students in the classroom, she discovered. Most adults are reluctant to even disclose to their relatives that their child suffers from the disease let alone discuss it with a stranger. But Khalida needed to make friends with parents so as to understand how best to "manage" their child and offer appropriate support since "each family" according to her "is a different story."

A common problem that needs to be addressed is finance. On her field trips, Khalida has often been witness to immense poverty, where whole families share a single room and live in dire conditions. In one instance, when a family with two thalassemic patients showed no signs of improvement despite daily medication, she visited their home and discovered to her horror that "there was no fridge in their house. And this medicine," she says "must be kept in the fridge. So it was not having any effect." Funds were raised immediately and a fridge was donated to the family.

 

A child undergoes blood transfusion

But there were more such families who needed help. It would have been inappropriate to seek more financial aid from the Government of Dubai, which already bears the entire expenditure of the Centre and its patients in terms of offering free medication and patient care. Still, she got the Ministry of Labour and Social Affairs to give such families a monthly allowance.

But that was not enough. Seeing that funds needed to be raised and the public educated about the disorder, parents of thalassemics patients at the Centre got together and formed the Emirates Thalassemia Society. Khalida, herself, heads the Society's Women's division.

The 34-year-old is obviously no slow worker. She welcomed medical practitioners and Islamic scholars to the Centre to address the people's personal concerns on whom they could marry as well as the religious implications of aborting a foetus that is certified to be suffering from a congenital defect like thalassemia. The idea of terminating a foetus diagnosed as a beta thalassemia major is slowly gaining acceptance on the condition that it is done before it completes a 4-month term. As of now, the Centre has assisted 65 pregnant mothers with a history of the disease to go abroad to check the health status of the foetus and to terminate it if it is diagnosed as a thalassemia major.

 

Meet Mohammed Nasir Hussain, 19 going on 20. We are 4 children. I am the youngest. Only I have this. I 'm doing my 1st year in O' Levels. I'm from Karachi, Pakistan. They found out when I was 9 months old that I was sick. I have a lot of friends here (at the Centre). We go out. For us, this is normal because we have nice facilities in Dubai.   Bone marrow is not possible in my age. It's risky. Under 13, it is more possible. So bad luck. My time has gone!   My dream is to be a very popular person. Maybe showbiz! Who knows!

To reduce risks, "a thalassemia major must only marry a normal person -- not even a carrier," says Khalida. The UAE government has made it mandatory for couples to be screened for the disease prior to their marriage but it does not stop anybody from getting married. Like Khalida says, "we don't have any rule to stop marriages in love story".

The Centre's biggest success story is Haseena (name changed) -- a beta thalassemia major -- married to a "normal" cousin. She is the only thalassemic in the region to have delivered a healthy baby girl. The secret? "Proper management" says Dr. Essam, who has been at the Centre for the past 14 years and is familiar with the history of every patient there. "Her mother was aggressive in ensuring that she and her brother (also a thalassemic) took their medication and blood transfusions on time -- even now, after marriage," he explains. "That's why they are living their life normal".

But Khalida's work is not over. 12 years may have achieved a great deal but there's still much to do. At the Centre, she has now begun to offer summer jobs to older thalassemics like Ambareen and 19-year-old Mohammed to engage younger patients in craft activities and games. On the political front, she is lobbying for a national campaign through the UAE government to screen people for thalassemia. If she manages to do that, it's yet another first for the region.

But no achievement is more rewarding than to hear patients like Mohammed describe their life as "normal". "For them, sleeping with the pump all night has become a normal thing … like wearing a wrist watch," says Dr. Essam. "and that! That is her achievement. That she has got these children to accept it as normal and lead a full life."