Rare Condition: Girl Born With Missing Skin on Scalp and Body

Sumayyah, a five-year-old girl in Singapore, is a survivor of aplasia cutis congenita (ACC), a rare birth defect where infants are born missing layers of skin. According to Singapore General Hospital (SGH) neonatologist Alvin Ngeow, Sumayyah is a living survivor with the largest extent of missing layers of skin in Singapore, affecting nearly 40% of her body at birth.

Understanding Aplasia Cutis Congenita and Its Risks

Aplasia cutis congenita affects approximately one in 10,000 births. While it often appears as a thin membrane or ulcer-like wound on the scalp, it can also impact the torso and limbs. In extensive cases, babies born with such significant skin loss have not survived, according to SGH medical staff.

For Sumayyah, the lack of skin on her head meant her brain was visible through a transparent membrane. Dr. Ngeow described this membrane as resembling “cling wrap.” This condition posed three primary life-threatening risks:

• Infection: Minute breakages in the membrane could allow pathogens to enter.
• Hemorrhage: A bleed in the sagittal sinus, a large blood vessel in the center of the brain, is extremely difficult to stop.
• Brain Herniation: The brain could be pushed outward through a weak spot.

Dr. Ngeow noted that Sumayyah’s delivery via caesarean section likely prevented brain herniation, which might have occurred during a natural birth.

The Specialized Treatment Protocol at SGH

Because Sumayyah was not diagnosed via ultrasound before birth, the neonatal intensive care unit (NICU) treated her similarly to a major-burns patient. This involved strict fluid management and antibiotics to prevent infection, as the absence of skin causes rapid fluid loss. Dr. Ngeow and his team utilized an incubator for added protection.

A multidisciplinary team—including a neonatologist, dermatologist, and plastic surgeon—developed a skin replacement strategy. Standard split-skin grafts were not possible because Sumayyah lacked enough healthy skin to cover the affected areas.

Cultured Skin and Artificial Matrices

Plastic surgeon Cheryl Hui explained that SGH, the only specialised facility managing major burn injuries in South-east Asia, has the capacity to culture and grow skin in a laboratory. On day 10 of her life, doctors took a small skin sample from Sumayyah’s groin. This sample took three weeks to expand into several sheets of usable skin.

To protect the brain during this growth period, the team used an artificial dermal matrix—a surgical “scaffold”—on day three to cover the scalp. By day 10, this artificial skin was extended to her torso and limbs. Once the cultured skin was ready a month later, it was grafted onto her body.

To maintain sterility, Dr. Ngeow improvised a sterile saline bath using a drip stand and saline bag, a technique he learned during national service. This process, combined with dressing changes every two to three days, continued for six months.

Long-term Recovery and Social Integration

Sumayyah was discharged after six months, though she continues to undergo scar revision operations at KK Women’s and Children’s Hospital. Because her healed skin is scar tissue, it does not stretch or grow like normal skin, requiring regular follow-up and scar management through her growing years.

The skin grafts on her scalp do not support hair follicles, leaving Sumayyah bald. Her father, Abdul Rahman, has previously shaved his own head in solidarity, though he says Sumayyah has told him it is not necessary.

While she is described as intelligent and chatty at home, her mother, Siti Abdullah, noted that Sumayyah has become more withdrawn and self-conscious. Dr. Ngeow emphasized that supporting her confidence and social adjustment is as critical as her physical skin care. He has already written to the Education Ministry and her future school to request that she be allowed to wear a beanie when she begins primary school in 2027.

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