6-month-old Nagpur girl dies of rare disease; suffers cardiac arrest


    Radhika Dhawad | Jun 26, 2019 16:39

    The tragic death of a six-month-old baby girl from Nagpur Saanvi Sonwane died of a cardiac arrest after she suffered from a rare disease Type 1 SMA.
    Saanvi Sonwane

    The tragic death of a six-month-old baby girl from Nagpur has left her parents and city doctors in despair. Saanvi Sathwane from Nagpur was diagnosed with a rare disease called ‘Type 1 SMA’ (Spinal Muscular Atrophy) when she was barely a month old. Born in January this year, Saanvi lost her battle with life on Wednesday early morning at city’s super specialty hospital – Icon Hospital.

    The tragic death of a six-month-old baby girl from Nagpur Saanvi Sonwane died of a cardiac arrest after she suffered from a rare disease Type 1 SMA.
    Saanvi while being carried inside an ambulance

    Saanvi’s father Devidas had told Nation Next that before she breathed her last yesterday, her heart stopped beating multiple times.

    Devidas told us, “Saanvi was on oxygen support since a while. We’d rushed her by a train ambulance from Nagpur to Delhi’s AIIMS hospital few days back, where we weren’t even provided a room saying that the hospital didn’t have any vacant bed for my daughter. We had to keep her waiting in the ambulance outside AIIMS. Dejected, I got her admitted in Safdarjung Hospital in Delhi.”

    The tragic death of a six-month-old baby girl from Nagpur Saanvi Sonwane died of a cardiac arrest after she suffered from a rare disease Type 1 SMA.
    Devidas along with his daughter Saanvi

    Devidas further said, “We tried to get Saanvi into an ICU there but failed. So we had to keep her in the general ward there. That’s when she suffered a cardiac arrest. To my horror, there wasn’t a single ventilator available. My friend who works in the same hospital came across an old ventilator lying down. We used the same for my daughter. That’s when I decided I’d go back to Nagpur because if she ever she’s kept on a ventilator, her survival chances wouldn’t even be bleak to say the least. ”

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    Devidas said that there wasn’t any cure or medicine available for his daughter in India. The only drugs that could save his daughter’s life were available in abroad, which cost around Rs 15 crore.  

    Devidas had even requested various ministers on Twitter to help his daughter by arranging for the life saving drugs. However, he didn’t get any response.