Father’s fight to save his family

Mom, two daughters stricken by mysterious lung disease


At 0:30 on Sunday morning, Jin-ju finally stopped breathing.

It was the 93rd day since the 15-month-old baby girl had been hospitalized with flu-like symptoms, which turned out to be an unidentified acute lung disease that has claimed the lives of four patients since May.

“I went to Busan (where she was hospitalized) upon hearing the news, had her cremated and came back,” Jeon Hyo-taek, the father, told The Korea Herald on Tuesday outside Asan Medical Center in Seoul. In Korea, when a baby that young dies, he or she is usually cremated without any funeral service.

Jeon, an army officer, was calm and showed little emotion as he spoke. But when he tried to show mobile phone pictures of his beloved girl, his hands trembled.

He will mourn for Jin-ju later, he said. Now, he has a wife and another daughter to care for.

In intensive care units here at Asan, his 32-year-old wife Baek Hyun-jung and 6-year-old daughter Ju-young are struggling for their lives. Both are battling the same mysterious disease that took Jin-ju’s life.

Jeon’s family is the first reported case in which members of the same family have caught the disease. In the past two months, eight patients have been confirmed stricken with the disease that causes severe scarring and thickening of lung tissue. Seven of them were expecting or recently gave birth. Four of them died.

“At first, we didn’t know what was happening,” Jeon said.

Jin-ju first developed the symptoms ― coughing and difficulty breathing ― around the middle of March. Soon after, her mother and Ju-young showed similar symptoms and were hospitalized at the same hospital with Jin-ju in Busan. 
 
On June 7, the mom and older child were transferred to Asan, where other patients with the disease are receiving treatment. By that time, Jin-ju’s condition had deteriorated to a point where she wasn’t able to make the transfer.

Last week, Baek received a lung transplant and is now recovering.

Ju-young, however, remains in a critical condition, relying on a respirator to breathe.

“It’s bad, very bad,” Jeon said, asked about the condition of his daughter.

Her lungs barely function. But for a little girl like her, the odds of survival for lung transplant surgery are low. Moreover, they don’t know how long she will have to wait for a suitable lung. He was told so by doctors.

Jeon couldn’t tell his wife about their children.

A medical mystery

The Korea Herald tried to talk to the doctors treating them, but to no avail. “We are not allowed to talk to the media regarding this disease,” a spokesperson at the Asan hospital said. Doctors report any developments to the Korea Centers for Disease Control and Prevention, which is orchestrating the nation’s response to the disease, so any questions should be directed to them, the official said.

On June 2, after a month-long investigation, the state disease control agency concluded that it wasn’t a virus, nor contagious nor a new phenomenon.

Yet, it couldn’t say what causes it.

Yang Byung-kuk, a director at KCDC, said similar cases have been reported, mostly among children.

In a local journal of pediatrics, there were reports of 15 cases among children between March and June in 2006, and they were then categorized as “acute interstitial pneumonia.” Seven of the 15 died within two months after admission to hospital. More were reported in 2008, with a similarly high mortality rate.

Acute interstitial pneumonia typically causes rapid pulmonary fibrosis, or severe scarring and thickening of the lung tissue, but the cases mentioned above and the recent cases involved scarring of airway tissue as well, he explained.

“We need further study to determine whether it was the same disease,” he said.

The KCDC plans a longer-term study which may last more than three years, to investigate it.

If it were contagious, the disease should have been found in those with a weak immune system like the elderly, infants and chronic invalids, but there was no such case, the KCDC explained.

The assurance, however, seems to be failing to allay the public fears as another suspected case of an outbreak within a family was reported.

Last week, an expectant mom and her 3-year-old son were found to have contracted the disease, in what could be the second case of an outbreak among family members.

By Lee Sun-young (milaya@heraldcorp.com)

 

Ju-young smiles, holding a Pororo toy in a Busan hospital on April 25.

Jeon’s wife, pregnant with Jinju, with her first daughter Juyoung in an undated photo.

Jin-ju (left) and Ju-young on March 2 before they got sick. (Photos provided by Jeon Hyo-taek)