When two-year-old Maryam arrived at Fortis Memorial Research Institute in Gurgaon, India, doctors were confronted with an exceptionally difficult case of severe congenital hydrocephalus.

Maryam was from Tajikistan and had been living with congenital hydrocephalus accompanied by megalencephaly, a developmental condition in which the brain is abnormally large. The hydrocephalus had caused a severe accumulation of cerebrospinal fluid and resulted in a dramatic enlargement of her head.

According to the hospital, Maryam’s head circumference had originally reached approximately 72 centimeters. The size and weight of her head made basic movements extremely difficult. She was unable to sit independently or hold her head upright.

An Earlier Operation in Tajikistan

Maryam’s family had already sought medical treatment in their home country.

When she was just 11 months old, doctors in Tajikistan performed a ventriculoperitoneal (VP) shunt procedure. The operation is commonly used to treat hydrocephalus by placing a tube that diverts excess cerebrospinal fluid away from the brain.

The procedure reduced Maryam’s head circumference from 72 centimeters to 64 centimeters. However, significant changes had already occurred. According to Fortis, parts of her skull had fused, making further reduction of the brain’s size impossible at that stage. Maryam still could not sit or hold her head up on her own.

Her condition remained extremely challenging.

A Journey to India

After learning about treatment available in India for another child with severe hydrocephalus, Maryam’s parents decided to seek help there.

They traveled approximately 1,175 kilometers from Tajikistan to Gurgaon, where Maryam was evaluated at Fortis Memorial Research Institute.

Her case was taken up by a neurosurgical team led by Dr. Sandeep Vaishya, then Executive Director of Neurosurgery at the hospital.

The doctors recognized that the situation was unusually complicated. Because Maryam’s skull had already undergone significant changes, treating her would require multiple carefully planned procedures rather than a single operation.

Eight Surgeries Over Five Months

The medical team ultimately performed eight surgeries over approximately five months.

Dr. Vaishya described the procedures as extremely risky and rare. The team succeeded in reducing the size of Maryam’s head, although the doctors faced serious complications during treatment. At one point, according to the hospital’s account, they nearly lost her—but she survived.

By the time of her eighth procedure in August 2018, Maryam’s head circumference had been reduced to approximately 65 centimeters. Doctors said they could not reduce it further because portions of her skull had already fused.

The objective was not simply to change her appearance. The medical team was attempting to reduce the physical burden of her condition and improve her ability to function.

Signs of Improvement

After the series of operations, doctors reported encouraging developments.

A follow-up CT scan showed good brain development, and Maryam had begun to lift her head, something she had previously been unable to do independently.

Dr. Vaishya cautioned that it was still too early to determine her long-term neurological outcome and that brain damage remained a possibility. Nevertheless, he described the treatment as her best opportunity for a more nearly normal life.

For her parents, those small improvements represented an enormous change.

A child who had struggled even to support her own head was beginning to demonstrate a new physical ability after months of difficult medical treatment.

A Rare and Difficult Medical Case

Maryam’s case illustrates the devastating consequences that severe hydrocephalus can have when treatment occurs after significant enlargement and structural changes have already developed.

Hydrocephalus involves an abnormal accumulation of cerebrospinal fluid within the brain’s ventricular system. In young children, persistent pressure can cause the skull to expand because the bones have not yet completely fused.

Treatment often involves procedures such as VP shunting to divert excess fluid. However, when hydrocephalus has progressed severely, treatment can become considerably more complicated.

Maryam’s case was therefore not a simple “miracle surgery.” It was a long, high-risk course of treatment involving eight separate operations and months of medical care.

And while the doctors could not reverse all of the damage that had already occurred, they reported meaningful signs of improvement.

A New Opportunity

In August 2018, the medical team at Fortis reported that Maryam was showing positive changes following her treatment.

Her head circumference had been reduced from the original 72 centimeters to approximately 65 centimeters, and she had begun lifting her head independently.

Her future remained uncertain, but after years of living with a devastating neurological condition, Maryam had been given something her doctors and family had been fighting for from the beginning:

a better chance at life.

Sources

• Press Trust of India (PTI) — “Girl from Tajikistan undergoes multiple surgeries for hydrocephalus at Gurgaon hospital”, August 21, 2018.
• Fortis Memorial Research Institute (FMRI), Gurgaon — Hospital statement concerning Maryam’s treatment and surgeries.
• Medical Dialogues — “2 Year Old Kid Suffering from Gross Congenital Hydrocephalus with Megalencephaly Successfully Treated at Fortis Gurgaon”, August 21, 2018.
• Phụ Nữ Việt Nam — Report on Maryam’s treatment and reduction in head circumference, August 23, 2018.
• Operating Room Issues — “Girl, 2, undergoes pioneering surgery in bid to shrink head”, 2018.