“I check my son’s body for blisters daily”

A father recounts his emotional journey caring for his toddler son who is a “butterfly” child.

“My son Aryan, now 2, was born in March 2015 in a Singapore private hospital. The day after he was born, the nurse came around to give him the usual round of vaccinations. I noticed small blisters forming on his butt but the nurse assured me that these blisters were normal for newborns and there was no need to worry. The doctor also prescribed cream and advised me to apply it on the blisters and it would gradually subside.

By the third day when we were home, I started seeing blisters forming on Aryan’s foot and some on the fingers of his left hand. Puzzled and worried that these would spread further, my wife Divya and I decided it would be best to see the doctor. Before our visit, I managed to speak to him on the phone. He reassured me that the blisters were probably due to the heat and we should observe him for a few days before deciding what to do. It didn’t take that long for us to notice that something was amiss.

Over the course of the next few hours, we began to see new blisters forming in different parts of Aryan’s body — they seemed to be ‘moving’ to more areas. What was worse, the earlier blisters also grew bigger. The cream given by the doctor had no effect at all ― I wanted to poke the blisters to clear the fluid but Divya told me not to.

“I learnt later that with Aryan’s condition, bandaging the wounds together can actually cause the fingers to fuse together.”

When we didn’t see any improvement in Aryan’s condition that night, we decided to head for the hospital, thinking the doctor who delivered my son should know more about the condition. On the way to the hospital, one of the blisters on Aryan’s foot grew so big, it burst. On using a cloth to absorb the fluid, I saw that the skin on the sole of his foot was open and raw.

When we arrived at the hospital at 2am, we were told that they don’t operate an emergency department, so we had to wait till morning to see the doctor. So for six long hours, Aryan cried through the night as my wife and I tried to do whatever we could to comfort him.

Finally, when we saw the doctor at 8am, he took samples of the fluid from Aryan’s blisters and admitted him. Every evening for the next four days, Aryan received antibiotics through an IV drip. The nurses also dressed Aryan’s wounds in paraffin wax gauze and bandages, and also bandaged his fingers in a long piece of gauze. I learnt later that with Aryan’s condition, bandaging the wounds together could actually cause the fingers to fuse together.


After four days, there was no improvement at all in Aryan’s condition. My wife and I were in a state of despair, feeling as if we’d lost our son. On the fourth day, the dermatologist came and upon reviewing Aryan’s records, told us that our son has Epidermolysis Bullosa (EB). It is a condition where any skin contact can cause it to blister, resulting in open wounds and sores. Aryan suffers from a cross between simplex and dystrophic types of EB (see below).

We decided it was best to take Aryan to the emergency department at KK Women’s and Children’s Hospital. The doctor on duty referred us to Dr Mark Koh — medical advisor to DEBRA Singapore, a support group for caregivers or patients with EB. Although we were relieved at first to hear of a specialist who could attend to Aryan, we soon found out that we had to wait six months for the earliest appointment! I pleaded with the doctor because my son couldn’t possibly wait six months to see Dr Koh!