Mumbai family owes Rs 45 lakh as mother awaits kidney transplant and daughter needs brain care

Two serious illnesses have struck one Mumbai household at the same time. The family consists only of women. Time is short, and the financial help available for treatment is running out. The 46-year-old woman of the house works in IT support. She has end-stage renal disease (ESRD). Because the vascular access for her dialysis has failed repeatedly, she stays alive only through haemodialysis three times a week.

Her 14-year-old daughter depends on an artificial shunt that drains fluid from the brain. She has had 12 brain surgeries so far, and eight procedures, major and minor, took place in the past year alone. The girl was born prematurely, in the seventh month. A brain haemorrhage at birth permanently damaged the brain's ability to reabsorb cerebrospinal fluid (CSF), and she developed hydrocephalus. A VP shunt was placed in her head in childhood to prevent life-threatening pressure. Such shunts, however, always carry a risk of blockage and serious infection. Earlier this year, an infection of the shunt put her in a coma.

The mother's kidney disease came to light in 2012, during the emergency delivery of twin girls. Her blood pressure rose suddenly, and she learnt she had interstitial nephritis, an incurable disease. Over the next six years, scarring spread across both kidneys and they stopped working completely. The daughter has developmental delay, is on the autism spectrum and shows symptoms of hyperactivity. She is not entirely non-verbal; she communicates her needs through short words and sentences. Her schooling has stopped because she cannot hold a pencil and cannot attend a regular school, but her fingers move easily on a mobile phone. She plays songs, adjusts the volume and sets up playlists on her own. She likes Bollywood, Hollywood and Marathi songs.

Her twin sister was born two minutes later. She studies at Rahul International School, is ahead in her studies, and helps with housework and in looking after her sister. She says: "Sometimes when I look at my mother, I feel I cannot afford to be childish. I focus on my studies because that is all I can do to give my mother some peace of mind. We are together, the two of us." The 66-year-old grandmother also keeps the house going. Even walking is painful for her because of worn-out knees, yet she helps look after her granddaughter every day while the mother works long shifts.

The family now owes more than Rs 45 lakh in medical and personal loans. This includes a Rs 25 lakh loan taken against their flat during a nine-month health break. Continuous dialysis, repeated shunt infections and emergency admissions to the paediatric intensive care unit (PICU) have exhausted the insurance limit. The family urgently needs Rs 8 lakh to Rs 10 lakh to raise an emergency reserve fund for the mother's stalled kidney transplant and the daughter's brain treatment.

The mother says: "My former husband stopped helping in 2017. I had to take personal loans of up to Rs 20 lakh to run the house and pay tuition fees. When my kidneys failed in 2020, I mortgaged the flat for Rs 25 lakh for treatment. This year, when my daughter collapsed, I contacted him many times, but he did not even reply." Both girls legally carry his surname, Bhat. The 2022 divorce settlement made no provision for maintenance. The former husband, however, has acknowledged that he has not contributed financially to the upbringing and medical treatment of the girls. He said he is currently on medical leave because of his own recent health problems. He also acknowledged that she is raising both daughters alone and manages everything well despite her own illness.

According to Dr Mahesh Prasad, consultant nephrologist at Mira Hospital in Mira Road, the patient is a confirmed case of interstitial nephritis. It is a progressive disease with limited treatment options. Her kidneys have failed completely, and she has been on regular haemodialysis for more than three years. Dr Prasad said: "Patients on long-term dialysis face a major problem with vascular access. In this patient, the AV fistula failed several times. As a result, she has to be admitted repeatedly for catheter-insertion surgeries and for treatment of blood infections. Each procedure costs Rs 50,000 to Rs 75,000, while monthly dialysis and medicines together cost Rs 40,000 to Rs 50,000. A transplant is the decisive, life-saving option for her."

She does not want to be portrayed as a victim of circumstances. She thanks TCS for giving her flexibility at work and medical leave. But she says the absence of any safety net for single parents facing serious illnesses in the family is a major gap in the country's health system. She says: "I have a company job, an education and the strength to speak, yet two chronic illnesses in one home pushed me into a debt of Rs 45 lakh. What about those who have no company support behind them? Organ failure is nobody's failure. It calls for institutional-level compassion."

With the fistula failing and dialysis only a temporary measure, the window for a transplant is slipping away. She says: "I have been working since I was 20. In college I did three part-time jobs. I did not want to ask anyone for money. But today my life is for my two daughters. If my heart stops, one will lose her medical care and the other will lose her support. The four of us are physically weak, but our four hearts beat together. All I want is for Mumbai to help us keep that beat going."