Nagpur: Harlequin baby dies two days after birth
A baby girl born with a rare congenital disorder with barely any external skin died on Monday in Nagpur after struggling for her life for two days.
The 1.8-kg girl was diagnosed with Harlequin Ichthyosis, a disorder that occurs once in 300,000 births, and her body was covered with thick plates of hardened, cracked skin and her internal organs visible.
She was put on oxygen on Monday morning and died at the privately run Lata Mangeshkar Medical College and Hospital. She was born to a 23-year-old woman from Amravati in the Vidarbha region of Maharashtra on Saturday.
“The father of the baby, a poor farmer from Amravati, and her grandmother were shocked to see her. However, they have accepted the situation,” said Dr Kajal Mitra, the dean of the hospital.
The baby was not shown to the mother till Sunday and she broke down when she saw her child on Monday afternoon in the presence of a group of doctors.
The baby had breathing problems since morning and was put on a ventilator. The mother was no a regular patient at the hospital and hence the disease wasn’t diagnosed earlier, doctors said. “Even otherwise skin disorders, especially Harlequin Ichthyosis, cannot be picked up on conventional ultrasonography,” pointed out Dr Mitra.
Doctors say Harlequin Ichthyosis is a very rare severe genetic skin disease that causes thickening of the skin. In such cases, the child’s whole body is encased in an ‘armour’ of thick white plates of skin separated with deep cracks.
Through the day, When images of the baby made rounds on social media, some were shocked, some were surprised, and many others were just disturbed. Some called it a “ghost child”, while some even hoped the “child passes away in peace” due to its “suffering”.
But hours before her death, the baby’s family said she was a gift from god.
A newspaper report quoted city’s renowned paediatrician Dr Uday Bodhankar as saying this condition can be detected during the fourth month of pregnancy through ultrasound or sonography tests, though it is clearer in the sixth month.
There is no cure for the disorder and studies say such babies need to be fed with feeding tubes for nutritional support as they are born with high risks of infections, low body temperature, difficulty in breathing, and sometimes dehydration.
In 1984, an infant with this disorder was born in Pakistan and the baby lived till 2008. Another such birth was recorded in the USA in 1994.