A tale of 2 lethal diseases and the power of faith !

A 12 year old boy presented with history of skin lesions for last 12 days. He had no previous health issues. On day 2 of illness parents took him to a doctor who suggested it could be chicken pox but has atypical findings. Doctor asked to start medicines as prescribed by him and follow-up after 48 hours.

After reaching home, patient’s grandmother decided that it’s what they call in folklore - Mata Ji and asked the parents to stop all medicines and keep him in a dark room and pray to God.

As days passed his condition worsened. He lost his appetite and became lethargic. His mother started worrying a little but kept her emotions to herself as she felt that probably in coming days, his sons health would improve. One day, her worst fears turned true. Her kid was not responding to her voice and as she removed the blanket that covered him, she was horrified to see that most of the skin has come out (a scene which no human can bear to see especially a layman). They went to nearby hospital where they were guided to take treatment in a higher medical centre. When the boy reached the higher medical centre, his general condition was very poor and doctors gave them little hope. He was diagnosed with TOXIC EPIDERMAL NECROLYSIS (80 % of body surface area was involved). Around the world only 1 in 10 survive this condition. As his skin was sloughed his natural barrier to infection was gone, he had developed bacterial infection in blood. He was shifted to ICU isolation for further management. His dressing alone used to take 4-5 hours a day with a lot of nursing care. Despite all efforts, his condition kept deteriorating till day 7 of hospital stay.

But as we say, you can’t write anyone off till he is fighting for himself. Slowly his condition improved and his skin condition and infections started getting better. He had to endure excruciating pain while during skin, eye and bowel care, but every painful second was worth it as he slowly improved and was shifted OUT OF ICU after 28 days.

As expected he became great friends with all the nursing staff and doctors. After all the hospital had become his second home now. As he got discharge everyone was elated and we felt as if he was reborn. He gradually was settling in normal life .He had multiple while marks all over his skin, but doctors said that the skin condition would improve over some time.

After 3 months of hospital discharge, he started having some swelling (nodes) in neck and eyes. Doctors looked at common causes and did some blood tests and asked to follow up after 2 weeks. As 2 weeks passed his swelling didn’t subside. He was given an antibiotics course and asked to visit after a week. After discussion doctor asked to him to undergo lymph node biopsy (removing node surgically and send for test).

His parents started getting the same feeling of doom. As they had developed so much faith in the hospital team, they let the child undergo the test with local anaesthesia. Their son underwent the test holding the doctors hand, as he was the closest mate he had in the last few weeks. To everybody’s dismay, he was diagnosed with lymphoma. We couldn’t imagine our ill-luck. After coming out of one serious illness, where chances of survival are very less, he was diagnosed with another potentially lethal illness. He underwent further test for determining the stage of illness. We started his treatment again. Fortunately, he responded well to the treatment and as days passed he started going back to school. At the same time he took his regular chemotherapy session. Every time we came for chemotherapy he brought a big chocolate for his best mate (doctor). As the time elapsed he was declared free of lymphoma.

As a doctor, this episode taught me a lot of things. It taught me to never give up hope. Children are like mirrors. They reflect what they see and experience and also freely express their true feelings. The child had more faith in me and my team that I ever had treating such a difficult disease. No book can teach us the emotional bonding between humans.

His story is more than a miracle and I wish him great health always.

Scientific Insight: It was not a case of chicken pox, it was Toxic Epidermal Necrolysis right from the beginning. This a rare disease and present with vesicobullous skin lesions along with mucosal (eyes, urinary tract and mouth). It can happen secondary to certain infections and as a reaction to certain medicines. In this child’s case, the cause of the disease, could not be ascertained.

By : Dr. Ankit Mehta

DM Pediatric Critical Care and Critical Medicine (PGIMER Chandigarh)
MD Pediatrics