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 (firstname.lastname@example.org)
|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)|
가족모두 폐질환 사경, 한살 딸 끝내 숨져..
원인 불명 페질환으로 눈에 넣어도 안 아플 15개월짜리 딸 진주가 떠나 보내고 사흘째 ..
하지만, 전효택씨는 마냥 슬픔에 빠져 있을 수는 없었다.
그에겐 살려야 할 아내와 첫딸이 남아있기 때문이다.
"19일 새벽에 (딸의 사망) 소식을 듣고 부산에 내려가서... 화장하고... 올라왔습니다"
"제가 정신을 차려야죠" 전씨는 코리아헤럴드와의 인터뷰에서 짤막하게 대답했다.
아내 백현주씨(32)와 첫딸 전주영(6)는 현재 서울 아산병원 중환자실에 입원 중 이다.
아내는 다행히 폐 이식 수술을 받아 현재 회복 중이다.
하지만 큰 딸 주영양은 상태가 안 좋다. 6세인 주영은 산소호흡기에 겨우 의지하고 있으며 언제 상태가 더 악화될지 모르는 상황이다.
"상태가 많이 안 좋아요... 아주"
전씨는 육군 28사단 중대 행정보급관으로 재직중이다.
육군.. 주영이네 가족 도와주세요
(연합) 병마가 전 상사의 가족을 덮친 것은 지난 3월 말로 거슬러 올라간다.
둘째 딸 진주는 폐렴 증상으로 지난 3월 29일 양주의 한 병원에 입원했다가 4월 5일 백씨의 친정이 있는 부산의 대학병원으로 옮겨 중환자실에서 집중적인 치료를 받았다.
이어 진주를 간호하던 백씨마저 갑작스런 호흡곤란 증세로 쓰러져 같은 달 20일 같은 부산대학병원에 입원했고 엿새 뒤에는 주영이마저 비슷한 증상으로 입원하고 말았다.
정밀 진단결과 세 모녀의 병은 최근 희귀병으로 알려진 '섬유증을 동반한 기타 간질성 폐질환'으로 추정되고 있다.
두 딸에 비해 상대적으로 상태가 나았던 백씨는 지난 8일 서울아산병원으로 이송돼 15일 폐 이식수술을 받고 중환자실에서 치료 중이며 첫째 딸 주영이는 병세가 더욱 악화해 지난 11일 서울아산병원 중환자실로 이송된 상태다.
진주의 장례를 마친 전 상사는 현재 청원휴가를 받고 아내와 주영이의 간호와 현재까지 1억원이 넘는 치료비를 마련하기 위해 동분서주하고 있으나 희귀성 질환이라는 이유로 보험 혜택을 받지 못해 발만 동동 구르고 있다는 게 육군의 전언이다.
전 상사의 가슴 아픈 사연이 전해지자 육군이 전 상사를 돕고자 발벗고 나섰다.
먼저 28사단은 전 장병이 나서 지난 5월과 이달 두 차례에 걸쳐 성금 1천여만원을 마련해 이미 전달했고 1천만원을 추가로 모금해 전달할 예정이다.
육군본부도 전 간부를 대상으로 자율적인 모금 운동을 펼치는 한편, 육군 인트라넷에 '전우돕기 배너'를 개설해 모금활동을 펼치고 있으며 육군 부사관단도 별도의 지원 방안을 찾고 있다.
김상기 육군참모총장도 전 상사의 안타까운 사연을 전해 듣고 격려금을 전달하면서 실질적인 도움을 주는 방안을 검토해 적극 지원할 것을 지시했다고 육군은 전했다.
육군본부 이학기 인사근무과장(대령)은 "전 상사의 가족은 원인을 알 수 없는 급성 중증 폐질환이 가족 내에서 집단발병한 첫 사례"라면서 "육군 자체적으로 모금 운동을 전개하고 있지만 사회의 보다 많은 관심과 성원이 절실한 상황"이라고 말했다.