Helping facial-different children face the world with a smile

When Facing the World (FTW) began its work years ago, its modus operandi was to bring children needing complex facial surgeries from all over the world to the UK.

“We then saw a very high incidence of children being brought over from Vietnam; and we were then invited to go to Vietnam by another charity to see what the situation was,” FTW CEO and Trustee Katrin Kandel said.

The occurrence of birth defects in Vietnam is estimated to be ten times higher than in neighbouring countries.

“So it became clear to us that this would be the first country where we would roll out our programme,” Kandel said.

Over the years, the programme has succeeded in transforming the lives of many children and youth.

Finding new look

“My wife broke out into tears when she saw Chinh for the first time after giving birth to him.”

Pham Duc Dung, Chinh’s father, remembers the moment vividly, almost three decades on.

“She grieved for him and for herself.”

Pham Duc Chinh, 28, was born to a poor farmer couple in a small village in the northern province of Thai Binh.

He was born with Treacher Collins Syndrome, a rare genetic disorder characterised by craniofacial abnormalities. In Chinh’s case, this included down-slanting eyes, absence of cheekbones, underdeveloped ears and a cleft palate.

“His condition was so severe that he stayed at hospitals more often than home during his first three years,” the father told Vietnam News Agency. “I remember his being at emergency rooms all the time.”

When Chinh turned five, his parents decided he should have a normal life and must go to school like other kids do. They took him to hospital after hospital in Hanoi, only to learn that there was nothing much doctors could do about his condition.

The young boy’s facial differences made school a difficult place to be. “Absent ears made it particularly hard for me to listen in open spaces like classrooms or halls." But it was not the only problem.

“I was bullied by classmates and younger kids ran away from me in fear,” Chinh recalled.

As time went by, Chinh began to face up to the fact that his facial deformities would be with him forever.

Then, out of the blue, he got a call from a doctor at Hanoi’s 108 Military Central Hospital three years ago. The compassionate doctor offered to sign him up for a charity project run by FTW so that he could receive free reconstructive facial operations.
Chinh went through three plastic surgeries in just one year to reconstruct his eyelids, nose bridge and cheekbones. The surgeries were done at the Centre for Craniofacial and Plastic Surgery established in the 108 Hospital with FTW support in 2018.

“It has been more than a blessing to us,” his father said. They had been waiting for this opportunity for so long.

Now he is finally able to face the world with a lot more confidence.

Sustainable shift

FTW began running medical missions in Vietnam in 2008, during which a multidisciplinary team of medics operated jointly with their Vietnamese counterparts on complex surgical cases like that of Chinh.

Moving away from the model of treating one or two children a year at astronomical cost, the UK-based charity is now able to operate on thousands of children by providing continuous training for Vietnamese doctors.

FTW has so far awarded more than 100 international training fellowships to Vietnamese medics who were sent to top medical institutions in the UK, Canada and the US to observe and learn new techniques and approaches. A further 140 fellowships are currently in the planning.

“We went together as a team of medics from different specialties – anaesthesiology, resuscitation and emergency, neurosurgery, and others – to major hospitals in the UK and Canada, all expenses covered,” said Doctor Vu Ngoc Lam, Director of the Centre for Craniofacial and Plastic Surgery. He was one of the awardees who joined 3-4-week training courses with his colleagues from 108 Hospital about two years ago.

They were instructed in how to perform a number of specific medical techniques neither popular nor done properly in Vietnam, and given the opportunity to meet top experts in different fields.

“It is not difficult to access general information about these techniques from Vietnam, but the main point is that the courses allow Vietnamese doctors to observe, with their own eyes, how the techniques are effectively done,” Lam said. “This is very hard to understand just from reading documents."

“Many children have such complex problems that you cannot fix them with a simple operation,” Kandel explained. “It requires a whole team of doctors including non-surgeons, such as anesthetists, speech therapists, psychiatrists and psychologists… the whole support system has to work together.”

“Our focus is very much on enabling doctors from Vietnam to go all over the world to top medical institutions and observe how these teams work together,” she said, adding that this helps them “establish a relationship and then ultimately bring back or utilise in Vietnam what is most appropriate for Vietnam.”

The foundation expects that in the longer term it can go to another country with Vietnam taking part as the trainer, she added.

‘Learned a lot’

Nguyen Hong Ha, head of the Department of Maxillo-facial, Plastic, Aesthetic Surgery at the Hanoi-based Viet-Duc University Hospital, confirmed that FTW’s approach not only reduced costs, but also improved the professional skills of Vietnamese doctors.

“Instead of bringing some children needing surgeries to the UK, the foundation sends a medical mission to Vietnam. It can take advantage of local health care infrastructure while the mission can conduct operations for many children,” he said, adding that Vietnamese doctors have learned a lot from them.

Ha said he could never forget the first engagement between FTW’s experts and a local team seven years ago. They decided to perform surgery on an 11-month-old baby who had facial differences and a respiratory problem.

It took about 7-8 hours to perform the operation and it was a success in terms of facial improvement. However, the baby developed complications several days after the experts left.

Doctors at the Viet-Duc University Hospital consulted with the experts and agreed that another surgery must be done right away. This was done with consultation of foreign experts via the telehealth platform. Ten days after the three-hour second surgery, the baby was discharged from the hospital. Now she attends school and can speak normally.

“In the past, we didn't dare to conduct operation on such complicated cases, but after working together with foreign experts, we gained confidence and can now handle up to 90 percent of the surgeries,” he told VNA.
Ha also said they used to contact FTW experts two times every month, but this has now become once every two months or even less, with consultation sought only in very complicated cases.

He said that with the availability of sophisticated equipment, his department can perform “single stage auricular reconstruction by pourous polyethylene frame using single incision endoscope-assisted for temporoparietal fascia harvest…”, in other words, ear reconstruction, one of the most difficult plastic surgery techniques.

“The Plastic and Aesthetic Surgery Centre of Viet-Duc University Hospital is one of a few centres in the world that can successfully carry out the technique”, he said, adding that the advantage of the method is that the patient only needs one surgery at a very early age (4-5 years) and can benefit from better aesthetic results than other methods.

Equipment support

Apart from providing corrective surgeries, the foundation has worked with its Vietnamese partners to identify medical equipment needed during the COVID-19 pandemic and facilitated the donation of 28 advanced monitors worth 308,000 GBP (530,000 USD) to the country.

“We identify truly game changing equipment. We don't donate consumables (things used once and then thrown away). We have donated items like microscopes, ultrasound machines and endoscopy towers,” Kandel said.

Since the latest phase of the FTW programme was launched, more than 2 million GBP of medical equipment has been donated, including inTouch telemedicine to Hong Ngoc, Viet Duc, K (Cancer) and 108 Military Central hospitals as part of expanding national and international links and treatment capabilities.

FTW has collaborated with the Royal College of Surgeon of England in granting global accreditation to the Viet Duc University Hospital and 108 Military Central Hospital.

“It was important for the foundation that the approach be assessed by an outside body. The accreditation has given the hospitals a standing within the international medical community,” Kandel said.

Talking about future plans, she said the foundation is hoping that international travel resumes and that doctors will be able to travel freely once again.

“We want to resume taking doctors from Vietnam for fellowships to all our partner hospitals in the USA, Canada and the UK.”
Kandel said the foundation also wants to restart sending missions to its partner hospitals in Vietnam, increase the telemedicine platforms internationally and finally continue to donate game-changing medical equipment.

For his part, Chinh, now a university researcher, is hoping to have one or two more surgeries to make eating and communicating easier.

"It is a test of my inner strength and destiny," he said./.