Parents of children with Apert Syndrome find hope in charity and Korean medical technology
Most parents spend the early years of a child's life dreaming that their kids will go off to college and enjoy wild success, but Thanh Ha only hoped her daughter would one day be able to read.
Three-year-old Nguyen Minh Ngoc of Hanoi plays with a cell phone while awaiting cranial surgery at the Severance Hospital in South Korea
When the 31-year-old Hanoi bookstore clerk gave birth to Nguyen Minh Ngoc, she was shocked to learn that her daughter would spend the rest of her life struggling with Apert Syndrome.
The disorder occurs in approximately one per 160,000 to 200,000 live births.
As these children grow, their skulls prematurely fuse, often resulting in brain damage.
Apert Syndrome often results in a high-arched palate, a narrow palate, and crowded teeth. Those who suffer from the disorder are often marked with webbed hands and a face that appears to be sunken in the center.
"Sometimes, she stared at her hands with four fingers stuck together," the mother recalled. "I wondered if she knew there was something wrong."
The symptoms can be inherited from a parent. But doctors say Ngoc's case was the result of an abnormal prenatal mutation that made the very basic aspects of her life terribly challenging.
Her mother said that the unusual shape of her palate made breathing difficult.
"Ngoc had a permanent runny nose in the first two years of life," Ha said. "It was rare for her to recover for a couple of days before falling ill again."
Costly surgeries are the only known treatment for the difficulties posed by Apert Syndrome. Surgeons can prevent the closing of the skull bones and separate child's fingers-when surgeries are performed early enough.
Such treatments typically cost tens of thousands of dollars.
The family found themselves in a horrible predicament.
Ha's husband worked at a local publishing company and the couple's monthly income totaled a mere VND6 million (US$290)"”just enough to make ends meet in Hanoi.
"I was really scared because I learned that without a timely cranial surgery, my daughter's brain would not develop normally," she said.
While the couple worried desperately about Ngoc's skull, surgeons at the National Hospital of Pediatrics performed three procedures to free up her fingers. During her long stays at the Hanoi hospital, Ha became aware of mothers like her who had managed to secure foreign funding for such procedures.
A second chance
During the operations on her daughter's hands, Ha met a group of South Korean pediatric surgeons who had come to Vietnam on a charity mission.
She kept in contact with the team of physicians and, after some time, they informed her that a Korean charity organization would provide the money to bring her daughter to Korea for treatment.
The mother and daughter left for Seoul on April 12. Six days later, doctors conducted the surgery at the Severance Hospital.
As of press time, Ngoc remains in intensive care. Her recovery should take a full month, Ha says.
The treatment cost was between US$40,000-45,000.
Ngoc was among beneficiaries of the Medical Korea Charity Program offered by the Korean Health Industry Development Institute (KHIDI). The organization was created in 2011 to share South Korea's medical technology with low-income patients from the developing world.
In the first half of this year, the program brought 28 patients from eight countries (including six from Vietnam) to eight hospitals for treatment.
Ngoc said that only the parents of a child with Apert Syndrome could understand the distress the disorder brings and the unimaginable relief granted by the surgery's success.
"I met another woman at the National Hospital of Pediatrics who also has a child suffering from Apert," she said. "I hope her child will receive a similar surgery."
Paving the road to recovery
Ha said she had received much advice on caring for and treating her daughter from to Le Quoc Tuan a famous actor and film director. Tuan also has a child with Apert Syndrome, who was treated several years ago.
"It was just like a nightmare. I was stunned but I decided to face the truth and fight against the bad luck," he said.
Tuan said he tried to let his wife know, little by little, about their son's symptoms during the first days after she gave birth, ten years ago.
"But she still fainted when she was presented with her baby. After that, we accepted the fact and decided to do our best for our son," he said, adding that he named the child Tuan in the hopes that he would share in his son's sufferings.
In 2005, his son received sponsorship for a surgery at the Royal Children's Hospital in Australia. Like Ngoc, Tuan's son also suffered from respiratory problems. However, due to limited funding, the boy's condition went untreated.
Three years later, Tuan decided to take his son to Severance Hospital.
The celebrity had borrowed from family and saved everything he could for the complicated procedure, but he didn't have enough.
Luckily, a Vietnamese student in South Korea created a website to raise donations to cover the cost of his son's six month treatment. Many more Vietnamese students in South Korea joined the cause by translating for Tuan and helping him navigate South Korea.
"Seeing my son recover and begin to study and integrate well with his friends has been our greatest wish," he said. "I recognize that there are still many kinds of people who are ready to help you whenever you face bad luck in life.
"I am very pleased now. I have fought for my son's health and my wish for him to grow up studying and functioning in society has been fulfilled."