Birth disfigurement swamps the medical centre tasked with addressing a serious social issue
Between 100 and 200 new patients are treated for severe facial and skull abnormalities every year at the Princess Sirindhorn Craniofacial Centre at King Chulalongkorn Memorial hospital. The surgeons and resources are stretched to the limit.
“We’re at the end of the tunnel, covering the expense is usually beyond our reach, and the government’s prospects for overcoming this social issue are hopeless,” says Dr Nond Rojvachiranonda, deputy head of the centre.
“Yet, at the very least, we need to encourage everyone who’s suffering from craniofacial problems that there is hope for a cure. The centre works on this tirelessly.”
A chance for the public to support the centre comes on July 9 when the Thai Red Cross Society, clothing label Kon and other partners are hosting “The Charity Fashion Show for Kids with Deformities of the Face and Head”. It will be staged at the Forum Park Hotel with “Finding Atlantis” as its theme. Celebrities and some of the afflicted youngsters will model outfits and perform.
It’s sure to be fun and fulfilling, but you can imagine, in contrast, the fear and frustration felt by a woman who’s just given birth and yet has to wait to see her baby for the first time – because he’s being treated urgently for facial or skull disfigurement.
“The problems we see every day are a tremendous burden for the whole family, not just the patient,” says Dr Nond.
“Those who suffer from craniofacial disorders are usually normal in terms of intellectual development, but they may face profound social and educational disadvantages. They can become so self-conscious and embarrassed about their deformity that they refuse to speak aloud.”
Nond says most people have seen facial clefts, but few will have come across severe cases, the results of craniosynostosis – facial bones fusing prematurely in the womb – as in Crouzon and Apert syndromes. Other forms have daunting names like frontoethmoidal encephalo-meningocele, craniofacial microsomia, craniosynodyodid and hypertelorism.
“Our centre is the biggest and best equipped in Southeast Asia, and yet we don’t know exactly how many craniofacial patients there are in Thailand. We see more than 100 new patients every year, though. Multiply that times the years since the Chulalongkorn Craniofacial Team of multidisciplinary experts first began this work in 1986 – and it adds up to thousands of people.”
Maintaining the same multidisciplinary approach today, the centre has specialists in 13 fields – plastic surgeons, neurosurgeons, paediatricians, dentists, ophthalmologists, ENT specialist, psychiatrists, anaesthetists, radiologists, psychologists, speech therapists, nurses and social workers.
The Thai Red Cross established the Chula centre in 2004 to treat the afflicted, train professionals and teach the public. Each year its patient activities foster a small community whose families share feelings and opinions and whose young people hone artistic skills and have some fun.
“Craniofacial care requires multiple treatments, beginning as early as possible, and they can extend over 10 years,” says Nond. “If the afflicted child doesn’t die at an early stage, proper medical care usually ensures them a normal life span. But they still face long-term problems if the deformity causes them to avoid school or make it hard to find a job as an adult.”
Surgery, when required, can be complex, demanding a highly skilled team of specialists. Intensive care is essential afterward to avoid complications.
How much all this costs varies widely according to the nature of the disability, but the centre normally charges negligible fees. Most patients come from needy families and often have to travel long distances, over and over. Government welfare assistance is wholly inadequate to cover the expense of sophisticated equipment, high-quality medicine and elaborate operations.
Surachoke Popin is 13 years old and has undergone 13 surgeries. His family farms in Lop Buri. His mother Supaporn, 36, talks about the anguish they’ve endured dealing with one of the most severe cases the doctors have seen. But, she says, “I just got used to it.”
“Surachoke has been having operations since he was three months old. What you see today is already 80 per cent better than he was.”
And he’s an easy-going child, always in a good mood, never cries and is gifted at memorising. He’s a good singer, too. He’s loved singing ever since he could first speak. Plus, their home community has been supportive.
Supaporn is grateful for all of this when she gets out of bed several times every night to place drops of fluid in her son’s eyes. He has no eyelids to prevent their drying out.
Supaporn and her husband have had a second child who has no disability. If anything were to happen to her, she says, “I can hope my younger son looks after his brother.”
“Severe face and skull deformity isn’t about one patient – it’s a social issue,” says Dr Nond. “In the big picture, our country handles issues facing underprivileged people very poorly, and craniofacial patients in particular.
“We doctors are at the end of our rope. It’s up to the government to educate people better about family planning – what to do if they want a baby, what they shouldn’t do, how to handle an unintended pregnancy, the risks of handicaps due to abortion and of living amid pollution while pregnant, and so on.”
In the meantime, Nond says, since so many citizens are living with birth disfigurement, “People should be more caring and sympathetic. Society should simply accept them, recognise their intellect and capacities rather than just their appearance.”
You can help
Tickets for the July 9 charity fashion show cost Bt1,000 from the Forum Park Hotel at (02) 678 7800, Kon at (083) 187 3017 and the Princess Sirindhorn Craniofacial Center at (02) 256 4330.
You can also donate money to “For Craniofacial Patients, Chulalongkorn”, Siam Commercial Bank savings account 0455033292, and via SMS True Move and True Move H at 91277 – type “10” to donate Bt10, “100” for Bt100, and so on.