Sunday December 24, 2006
Special mum for a special child
A young DAPHNE LING is awed by a mother only a decade older than her who had to deal with the death of one child and now lives with the almost constant suffering of another.
LITTLE Siti Aisya Syazreen Shahidan is just like any other toddler – she is the apple of her mother’s eye, loves being cuddled, and is constantly demanding attention. And her mother, like any mother of course, thinks she’s the most special child in the world.
But little Aisya really is special compared with most children: born with the extremely rare condition known as Fraser Syndrome, her eyelids are completely fused together, her fingers are webbed, her hearing is impaired and her larynx partially shut.
I first met Aisya when I was a volunteer at Ipoh Hospital’s Paediatric Rehabilitation Unit. Although I had seen many special children with various conditions and disabilities, little Aisya left me stunned; so much so I did not know how to react. Then I looked at her mother. And, again, I was stunned – this time by the all-consuming love this mother has for the little girl with so many problems.
They say that special children are born to special mothers, and 30-year-old Nor Hayati Yahaya is one such mother. Her first-born also had Fraser Syndrome and survived only 45 minutes: in addition to all that afflicts Aisya, that little girl had no kidneys.
Third in the family, Aisya is now three-and-a-half years old. Her six-year-old brother, Syazwan, has no physical or developmental problems.
Hayati, an STPM-holder, had harboured dreams of opening her own business. But she gave all that up for this particularly difficult motherhood.
As she reminisced about life with Aisya and her journey from her first pregnancy, I could only marvel at her. After all, at 22 she is barely a decade older than me, and yet she has already survived the shattering death of her first-born and the birth of a child who needs constant care.
She admits that the first few days after Aisya’s birth were extremely traumatic: it was more than a week before she felt strong enough, emotionally, to see and hold her child for the first time.
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Hayati and the apple of her eye: her precious Aisya. The little girl underwent an operation recently to create eyelids for her left eye. --Photo by ZABIDI TUSIN |
The doctors and nurses at Ipoh Hospital have been very sympathetic, too: after Aisya’s birth, they offered Hayati a room of her own so she would not have to deal with stares and comments. They also covered Aisya’s eye area with eye-patches so people would think the infant merely had jaundice and would not bug the distraught parents with questions.
Recalling the anguish, despair and uncertainty she felt during those early months, Hayati says: “Doktor selalu cakap anak saya okay, tapi sesudah lahir, memang dunia kami KO. Hancur segalanya bila melihat anak kami macam ini.” (The doctor always said our child was okay, but after her birth, our world collapsed. All our hopes were shattered seeing our child like this.)
Fraser Syndrome, also known as Cryptophthalmos-Syndactyly Syndrome, is an autosomal (non sex-linked) recessive genetic disorder. “Cryptophthalmos” is the complete fusion of eyelids, and “syndactyly” is the partial webbing of fingers and/or toes; a more rare form of this syndrome also presents with kidney complications and blockage of the trachea, among other problems. A recessive genetic disorder occurs if there are two copies of a defective gene present. (Sources: webmd.com and biobasics.gc.ca.)
Fraser Syndrome is so rare that it occurs only in 0.043:10 000 of births (or 4.43 births among a million). Indeed, only one doctor in Ipoh Hospital’s Paediatric Department had heard of the syndrome when Aisya was born.
At three months, Aisya developed breathing problems and the doctors discovered that her larynx was webbed. Her parents were told that she would need a tracheostomy (a permanent opening in her trachea, or windpipe, into which a breathing tube is placed) in order to survive. The alternative would be to let her die.
The moment when she had to make that decision remains fresh in Hayati’s mind till today. Both she and Shahidan were adamant that as long as there was hope, they would do everything in their power to help their daughter.
“Kami ingat, masuk tiub, habis masalah Aisya. Tapi, kadang-kala, bila kami nampak dia menderita, memang kami rasa bersalah dia sakit kerana pilihan kami.” (We thought inserting the tube would be the end of Aisya’s problems. But, sometimes, seeing her suffer, we feel guilty that she is suffering today because of the choice we made.)
Whenever she is angry or frustrated, Aisya yanks at her breathing tube. Twice, her frantic mother had to rush her to the hospital before her windpipe collapsed.
On Dec 12, Aisya was in hospital once again, this time at Hospital Universiti Kebangsaan Malaysia, where doctors successfully created eyelids for her left eye using tissue from her lips. Surgery on the right eye area will have to wait until she gets bigger as there isn’t enough tissue to harvest from her tiny lips now.
Hayati and Shahidan had hoped that Aisya might have some vision after the surgery. Unfortunately, once the doctors opened up the fused tissue over the left eye, they discovered that although Aisya has an eyeball (albeit much smaller than average), she doesn’t have a pupil – all she has is the white of the eye.
Doctors are planning to fit artificial eyes/lenses at a later stage – but as the lenses have to be imported from Australia, the cost might be too prohibitive for the family. Hayati and Shahidan remain optimistic, however.
As Hayati and I chat, Syazwan bends and pecks his little sister on the forehead. Hayati remembers that he, too, suffered when Aisya came into their lives, as he felt left out. When he was younger, he constantly asked his mother if she loved him as much as she did Aisya.
Once, he even asked: “Kalau saya sakit, mak jaga tak macam mak jaga adik?” (If I were sick, would you care for me like you care for my little sister?) Her reply: “Macam tu mak saying adik, macam tulah mak saying abang.” (The way I love your sister is the way I love you.)
I am touched by this little boy’s generous spirit and his obvious love for his sister. Hayati says that the little boy feels his sister’s pain acutely: he’s told his parents it’s just plain unfair she can’t play like the other kids or eat ice cream like he does.
The breathing tube makes it impossible for Aisya to swallow, so all her food has to be blended and fed through a feeding tube that is inserted into her stomach via one of her nostrils. She has only ever had occasional licks of a lollipop or a drop of soup now and again.
Hayati’s day starts the minute Aisya wakes up. When the little girl’s mood is good, mum gets some time to herself. Other times, mum has to sit for up to 20 hours in the same spot, rocking her daughter in the buian (cradle). During those times, the living room in which the cradle is hung becomes Hayati’s bedroom and kitchen, as Aisya will only sleep in her buian.
Shahidan never grumbles if the housework is not done, and does his share of caring for their daughter, Hayati says.
“Paling best musim bola. Masa tu, 24 jam lah dia buai Aisya (The World Cup season was best, as he would rock Aisya 24 hours a day),” Hayati says, looking fondly at her husband.
I ask how often Aisya is in a good mood, and Hayati replies, laughing: “Sekali sebulan dah happy lah saya.” (Once a month, and I’m happy.)
She shares that Aisya loves phones, and any telephone conversation has to be shared with her. “Anak dunia moden (child of the modern world),” Hayati says, hugging her youngest, before we both burst out laughing.
While many would rather hide their special children away from the world, this family has no qualms about taking Aisya out. To them, she is as normal a child as any other, just more special in some ways.
Their greatest wish is to see Aisya accepted in society, so that she will not be ashamed of who she is. And, aware that they might not be with her forever, both husband and wife want to teach her to be independent.
My visit to Hayati’s home is a humbling experience. Words are not enough to describe a mother’s love that knows no boundary or handicap. It is a language of unconditional love that transcends all the tangible forces in the world and to have felt it is priceless.
I can’t even imagine what it would be like to have to care for a child like Aisya. If God throws me a challenge like that in the future, I hope I can be at least a tiny fraction of the kind of mother that Hayati is.
This young woman salutes the mothers of the world who speak the same language, that of motherhood.
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