Another chance at life

Psychologists describe it as one of the most harrowing diagnosis faced by parents – the discovery that their newborn suffers from a craniofacial deformity. While it is thankfully rare that the child is rejected, the pressures of caring for the infant put such parents under tremendous stress and they are often at a loss to know where they can turn to seek timely treatment. Often too, they are acutely aware that they do not have the means to pay for the costly treatment to correct the deformity. 

Fortunately the Princess Sirindhorn Craniofacial Centre is on hand to help. Set up by King Chulalongkorn Hospital in 1986, it is the first and only craniofacial centre in Thailand and indeed Southeast Asia to be equipped with experienced healthcare personnel and special instruments to handle and foster these complex patients. 

Originally known as Chulalongkorn Craniofacial Centre, it was given its current name by HRH Princess Maha Chakri Sirindhorn herself in 2008. This year, to mark the auspicious occasion of the 60th birthday of its Royal Patron, the hospital is providing surgery and treatment free of charge to 200 craniofacial patients and their families.

With a level of care that parallels that of the leading craniofacial centres worldwide, the Bangkok centre has gained significant reputation internationally, particularly for its “Chula technique”, which corrects a deformity known as frontoethmoidal encephalomeningocele. The technique was developed by the centre’s head, Professor Doctor Charan Mahatumarat .

Charan’s team is made up of craniofacial surgeons, neurosurgeons, geneticists, paediatricians, radiologists, otolaryngologists, ophthalmologists, orthodontists, nurse coordinators, social workers and speech pathologists who work together to provide a service that is second to none. They are also equipped with the special tools required to undertake the delicate surgical interventions, which are very costly and not available at regional hospitals.

Such complex treatment is a significant financial load for any family and those most in need are often not covered by the national health security policy. They also need to find the money to cover travel expenses and accommodation and so for many, treatment is a dream that may never come true.

Many factors can cause craniofacial deformities, among them genetics and the environment. The highest number of cases are found in the North and Northeast, and these children are most often born to poor families.

According to Charan, one of about every 700 children will be born with a cleft lip and one of every 5,000 with frontoethmoidal encephalomeningocele. The risk of Crouzon disease is 30,000:1 and for Apert ayndrome 45,000:1.

“There is no firm evidence that these craniofacial deformities, with the exception of Crouzon and Apert, are genetically transferred. The birth disfigurement occurs during the first four weeks of the formation of the infant,” he says.

While understanding the financial obstacles, Charan encourages affected families to come to the centre as soon as possible after the birth. “Craniofacial deformities can be observed immediately after birth. They can be cured but treatment must be timely. Children’s brains develop very fast. The first year is the critical period and it is during this time that patients must receive treatment. Don’t worry about the expenses, just come. We’ll find a way to support you,” he says.

Chutima Yodnangrong, a nine year old from Burirum province, has undergone surgical treatment with the “Chula technique”. She’s gone through several procedures since she was born and while her parents have often found the going hard, they now feel nothing but relief. 

Sureeporn Noradee, an 11 year old from Nakhon Ratchasima province, suffers from Apert. She has also been receiving treatment since she was born yet has managed to remain a happy child throughout, thus not becoming an emotional burden on her mother. Children born with Apert’s have abnormal growth of the skull and the face due to early fusion of certain sutures of the skull, bulging eyes that are wide-set and tilted down at the sides, problems with teeth alignment, and webbed fingers and toes. In woman, the face stops developing at the age of 18, while for men it continues through 20 years.

In Sureeporn’s case, Charan explains, she has to wait a little bit longer before receiving facial treatment using pulling equipment. The face can be pulled by just 1 millimetre a day. Thus if her face needs to be pulled a total of three centimetres, it means she has to receive medical treatment for 30 days followed by a recovery period of about three months.

The majority of kids born with complicated conditions or disease are normal in other respects. With proper and of course timely treatment, they will enjoy an average life span.

“In the past, before we were able to offer craniofacial treatment, the affected children would die because they couldn’t breathe or eat or became infected by other diseases due to the anomalies of facial structure,” says Charan.

 An Ananda Mahidol scholar, Charan says he has never regretted taking up the challenge of working in this field and helping to develop new techniques to ensure better treatment for these unfortunate patients. 

 “Thailand has fewer than 10 doctors able to perform craniofacial surgery yet we are one of the leaders in the field,” he says proudly.

He is also greatly appreciative of the Princess’s kindness, noting that she keeps abreast of the centre’s work and always asks how the patients are doing. 

“Her concern always boosts our spirits,” Charan says.

 

A HELPING HAND

Donations can be made through:

-Siam Commercial Bank, Thai Red Cross Branch, account name “Hospital Chulalongkorn”, savings account 045-5-03329-2

-Krung Thai Bank, Pathumwan Branch, account name “Associate Craniofacial Patients”, savings account 008-0-07821-4

-Kasikorn Bank, Patpong Branch, account name “Associate Craniofacial Patients”, savings account 018-2-94741-5

-Bangkok Bank, Surawongse Branch, account name “Chulalongkorn Craniofacial”, savings account 147-4-71940-6

-For more information, contact the Princess Sirindhorn Craniofacial Center, King Chulalongkorn Memorial Hospital Fl14, SorKor Building, Rama IV Road, Pathumwan, Bangkok 10330. Call (02) 256 4330, (02) 256 4330 fax (02) 256 4914 or visit www.CranioFacial.or.th.