Baby with rare condition treated at city hospital

The baby had monogenic inflammatory bowel disease

Doctors at Rainbow Children’s Hospital have treated a baby with a rare genetic condition, who had a bone marrow transplant, and subsequently survived a stint on an ECMO machine. The child is doing well.

When six-week-old Lochen was brought to the hospital, it was for diarrhoea and severe dehydration. While parents suspected a simple infection, repeated hospitalisation for over four months led to investigation and Lochen was diagnosed with monogenic inflammatory bowel disease caused by a genetic mutation. The doctors said it was caused by IL-10 R deficiency.

“The only available treatment was an early bone marrow transplant,” said R. Karthik Narayanan, senior consultant at the paediatric intensive care unit, who treated the child.

Since the hospital did not have a licence for transplantation, the child was shifted to another hospital for treatment.

At five months, Lochen underwent bone marrow transplant with CMCHIS support but suffered severe complications owing to infection. Almost all his organs were damaged as BMT wipes out immunity.

Fourteen days post-transplant his kidneys, liver, heart and lungs failed. The only option was to provide ECMO (extracorporeal membrane oxygenation) which would only treat the heart.

Lochen was on ECMO for 20 days after which he was put on dialysis. The ventilator support was removed after tracheostomy.

A team of doctors, including Karthik Narayanan, Geetha and Nataraj Palaniappan, provided round-the-clock care for the baby. The child weighed 5kg instead of 7kg for normal growth.

ECMO increases the risk of bleeding and the child developed bleeding in the right side of the brain. Consultant neurosurgeon Santhosh Mohan Rao did a craneotomy to remove the blood clot. Consultant Paediatric hematologist Dhaarani Jayaraman helped in post BMT care.

Lochen, who was born in March 2020, underwent treatment from December 2020 to February 2021.

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