Saturday, August 24 2019


Fighting an endless fight against pain

Update: December, 31/2014 - 08:47

Hong Vu at three days old and two months old. His condition is much better after being cared for by Lan and her group. — VNS Photo Tran Phuong Lan

by Thu Van

HA NOI (VNS) — As Lan lifted the clothes covering the newborn baby girl, Yen Nhi, her heart broke yet again.

No matter how many times she'd seen it, finding a baby with Epidermolysis Bullosa (EB) was wrenching.

She'd been called into the ICU ward of the National Pediatrics Hospital on a recent Thursday afternoon to tend to Nhi, who suffers from a rare, incurable genetic condition that leaves the skin so fragile that it comes off at the slightest touch.

Lan quickly put her bag on a table that had been prepared in advance and took the special bandages, medicines and other things she needed.

Yen Nhi had been born that morning in a hospital in Ninh Binh Province, about a two-hour drive from Ha Noi. Doctors at that hospital did not even know about the disease, Lan guessed, as they had used normal medical tape to attach the breathing tube to the baby's nose.

"The skin of EB patients is very fragile and likely to fall apart and form blisters, so we have to use special wound care not to hurt them more," she said.

Since the disease is quite rare in Viet Nam, doctors in many hospitals are unlikely to know how to take care of patients with the condition, she added.

Though Lan tried very hard to remove the tape very tenderly, the baby's skin came off and her cry of pain was heart-rending. She had badly broken skin all over her two legs and hands. With all the bandages done wrongly, it was impossible to remove them without adding to the pain she was already suffering.

After five hours of cleaning, washing and applying medicines, keeping her heart normal through the baby's unbearable cries and trying to ignore bleeding from the wounds, Lan finished changing the bandages at around 7pm. It was exhausting work, but she was not done.

She had another EB patient, a baby boy, to take care of in the same hospital. The boy had been abandoned by his own mother a month earlier because of his condition. Lan had been taking care of him like her own baby, naming him Hong Vu. It was another two-and-a-half hours before she could leave the hospital.

All heart and grit

Tran Phuong Lan is no doctor or nurse. She has never had any official medical training. All she has is an extraordinarily kind heart "whose fate" she joked, "is possibly attached to EB children."

She had met her first EB patient four years ago at an orphanage in a pagoda. The body of the baby girl, who she later called Bong, was infested with maggots since she was receiving no care. No one knew what to do.

"I believe there was some kind of connection between me and the baby. I couldn't get the picture of her crying from pain out of my mind," Lan recalled.

Lan started to learn about caring for the baby from a friend in a charity group that she participated in. It was nothing like taking care of a normal newborn.

"They have a terrible time each day because it would take hours of pain and suffering to change their dressing," she said. But the job has to be done to prevent the wounds from getting infected.

"You need to be really tough to do it, because seeing the baby crying out of pain will tear your heart apart," Lan said, adding that her friend cried all the time when changing the dressing for Bong.

Lan spent several months with Bong in the National Hospital of Pediatrics, and many more in the next four years with other babies.

"The hospital calls me whenever there is a new EB patient," she said. She has never said no.

So far, Lan and a few friends in her group have taken care of 34 EB patients, some of them at the hospital and others at their homes.

The group has to raise funds for their work, since wound care is costly and materials and medicines have to be imported.

An Do Nhu Ngoc, mother of a baby boy born with EB in Kon Tum Province, said she could never thank Lan enough.

"The hospital refused to treat my baby and said we should be prepared for the worst situation. It was lucky that we found Lan. She saved my son," Ngoc said.

Lan asked Ngoc and her husband to take the baby and stay at her house in Ha Noi, where she guided them in taking care of the baby's wounds for one-and-a-half months.

Back in the Central Highlands, the family continues to receive wound care and milk for the baby from the group for free, Ngoc said.

"I really don't know what to say. Her kindness is beyond my imagination," she said.

Lan does not bask in such praise and adulation.

"Honestly, it is very stressful, doing things that make kids cry and seeing them in pain, knowing there's no cure yet. You don't know if there's hope or not. It can be depressing, sometimes I really want to quit.

"But I can't do it. I can't leave them in pain, I can't say no when some parents call me and ask for help because their babies are in pain and they know nothing about caring for them," she said.

Bong, the first baby with EB that Lan met four years ago, is now in a stable condition at a child protection center in Ba Vi District that Lan visits every Sunday. Hong Vu, the other abandoned baby, is also getting better. Her latest ‘patient,' Yen Nhi, will also do better with constant care, for the time being, Lan knows.

Lan's happy to see the children get better with care, but she is always sad that she does not know for how long they can carry on. She is always sad that they actually live in pain all the time.

"It's like an endless fight. Every day, you never know if you'll receive another call about a new EB case."

Lan and her group work on their own because there's no specialised unit in any Vietnamese hospital that deals with EB patients.

Lan's story

Lan is a 38-year-old single mom with a 11-year-old daughter. Her mother was sick and had to stay in the hospital all of the time since Lan was 13. She seems to be "attached to hospitals," Lan said wryly.

She lost her first baby when he was just 10 months old in 1997. Doctors said that she and her husband would not be able to have healthy babies because they had some conflicting genes. So they got divorced. Then she started to go to Bo De pagoda in Ha Noi to play with the children there and met Bong, her first EB case.

She makes a living managing several businesses including a furniture-making company and some cafes.

She does not have much time for herself since becoming part of the group that takes care of EB patients. There are days when she travels 150km on her motorbike to visit children's homes to change the dressing.

Her father is always worried she might get infected with some disease from the children.

But Lan can't quit, and is always on call. — VNS

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