Dương Thị Thảo, 14 year old girl suffered from Macroglossia, underwent a successful surgery

Commentary: I am very impressed by the selfless dedication of the unsung heroes who help less fortunate people from all walks of life. They represent the best face of humanity and compassion. Sam Seyadoussane, aka endearing Sam-Ottawa and his Virtual Medical Miracle Network (VM2N) have done some amazing works of connecting patients to the medical experts and also fundraise for the medical expenses.

According to Sam-Ottawa, Dr Dang Hoang Thom, a plastic surgeon and Thao’s treating physician, was the one that operated on her. Both Dr Dang Hoan Thom and Mr Ha Van Minh, Head of NHP Social Affairs Department/ Truong Phong Cong Tac Xa Hoi, took really good care of Thao, beyond anyone’s expectation.

thao3 Dương Thị Thảo, 14 year old girl suffered from Macroglossia, underwent a successful surgery

Duong Thi Thao, 14, has an oversized tongue that prevents her from closing her mouth. Her exposed tongue dries and bleeds often, especially in dry, cold weather.

Prof. Nguyen Thanh Liem, Director of Hanoi National Hospital of Pediatrics agreed quickly to see Thao upon request. Mr Ha Van Minh was the contact person  whom VM2N worked with to connect Thao’s family to the hospital.

My special thanks and admiration for all the workers involving in the bringing and providing the medical and surgical care to Dương Thị Thảo.

Dương Thị Thảo has an oversized tongue that has prevented her from closing her mouth for all the 14 years that she has lived on this earth so far.

thao2 Dương Thị Thảo, 14 year old girl suffered from Macroglossia, underwent a successful surgery

Doctors in Hanoi have successfully repaired a 15-year-old girl’s enlarged tongue, which had prevented her from closing her mouth since age one.

Duong Thi Thao was discharged January 12 after a successful operation on January 3 at Hanoi National Hospital of Pediatrics, Sam Seyadoussane, who runs the Canada-based Virtual Medical Miracle Network and helped Thao contact the doctors, told Thanh Nien via email.

Thao11 Dương Thị Thảo, 14 year old girl suffered from Macroglossia, underwent a successful surgery

A post-op photo of Duong Thi Thao from Virtual Medical Miracle Network.

“She no longer needs to cover her face with a face mask when going out,” he said.

The operation is expected to free Thao from further suffering, which for nearly her whole life, included difficulty with simple tasks such as eating, breathing or even swallowing saliva. She was ridiculed in school and lived an otherwise reclusive life inside her house.

Thao suffered from Macroglossia, or Beckwith-Wiedemann syndrome, a congenital growth disorder, which caused the increase in tissue on her tongue, rather than by a tumor.

The surgery was conducted by Dr. Nguyen Thanh Liem, director of the Hanoi hospital, and his team. Hospital staff members knocked on doors to collect money for the girl’s family in order to pay for the procedure. A local Buddhist monk and some Catholic nuns also helped raise funds.

News website VnExpress said in a recent report that Thao’s exposed tongue would become dry and bleed, which was exacerbated by the cool, arid climate of her hometown in the northern mountainous province of Thai Nguyen.

Do Thi Thon, her mother, said Thao had one surgery when her tongue began to swell at age one. The family of the H’Mong ethnic group then had to borrow money, selling their paddy field and their only buffalo to have her treated at the Vietnam-Sweden Children’s Hospital.

But she was never taken back for follow up appointments because her parents, who had two older children to take care of as well, could not afford to – until now.

“Thao has been stable. She can eat and drink by herself, and can speak,” Dr. Dang Hoang Thom from the social services unit of the Hanoi hospital said in an email Seyadoussane forwarded to Thanh Nien.

Thom she will receive injections three months later to reduce her neck swellings.

Kim Anh, a charity worker and Virtual Medical Miracle Network volunteer from Hanoi who worked closely in the case, said she was “stunned” upon seeing Thao after the procedure.

“The extraordinarily large tongue has disappeared, and although it’s still swollen and Thao is yet to be able to close her mouth, she looks much prettier and more comfortable,” Anh said.

The Life Before The Surgery

Thao’s parents say she was diagnosed with congenital throat and chin tumors that caused her tongue to swell beyond the mouth cavity.

The girl’s father said Thao was born in 1998. At her birth, the doctor diagnosed that the baby caught with a neck-chin tumor. Since then her tongue just swelled and protruded out. The family does not have any member who has had this disease before.

At that time, Thao’s mother cried all the tears when she saw the child with a disability. Hearing about a baby with a long and big tongue, the villagers flocked to see the baby. The large, long tongue makes Thao never be able to close her lips.

Sam Ottawa, an expert from Virtual Medical Miracle Network which connects patients needing medical help with doctors, hospitals as well as charitable and medical institutions in Vietnam and overseas, told Vietweek Thao might be suffering from Macroglossia, or Beckwith-Wiedemann syndrome, a disorder caused by an increase in the amount of tissue on the tongue, rather than by a tumor.

He said the condition can be corrected with surgery or radio frequency reduction.

Do Thi Thon, her mother, said Thao did have a surgery when she was one year old, but she was never taken back to the hospital because the family could not afford it, and they had to take care of two older children as well.

Thon said she and her husband had sold their only buffalo and all their fields, and borrowed some more money to take Thao to the Vietnam-Sweden Children’s Hospital in Hanoi.

But their money was only enough to have the tumors in the throat and chin removed.

The mother said she remembers doctors saying that her daughter needed to go back to have her tongue size reduced. But the parents could not afford to do it.

With their fields and buffalo gone, the H’Mong couple in Xuat Tac Village, Phuong Giao Commune, Vo Nhai District have had to hire out their labor to make ends meet, and their debts have kept piling up.

For 14 years, her tongue has been getting bigger, with wide cracks so the little girl has to carry a handkerchief with her to absorb the blood. In the dry winter, the girl suffers from headaches and neck pain.

Her teeth always bite on the tongue. It is extremely difficult for Thao to eat, swallow saliva or even breath. Yet for nine years, Thao has been an excellent student of the Phuong Giao Secondary School.

The parents say it hurts them a lot to see Thao, an innocent and kind girl, boycotted by her peers. Thao just stays at home after school, playing with her pets.

“My friends say I am dirty, that I do not brush my teeth, that I keep sticking my tongue out. But that’s not what I want (to do).

“Every time they tease me, I would find a corner to cry and dare not tell my parents.”

Thao said she used to be angry with her friends, but now feels more like it’s her fault. Feeling a complex about her odd tongue, Thao is afraid of seeing strangers.

At home, the little girl does a lot of housework to help her parents, such as taking care of her younger brother, cooking, washing clothes, watering vegetables, raising pigs…

Duong Van Kieu, chairman of Phuong Giao commune, said Thao’s family would need a large sum of money to treat her, but the commune itself is not doing well and is in no shape to help them.  

Half of the families in the commune, which is home mostly to the H’Mong and Dao ethnic people, are poor. Many areas do not have electricity supply or proper roads. At present, four villages in the commune still do not have electricity nor telephone network, while the traffic is very difficult.

From multiple sources including Thanh Nien News

This entry was posted in Charity, Interesting Cases, Life Adversity, Medicine, Role model. Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>