On my 50 th birthday (in 2012), my niece wrote on my timeline “Happy Half Century”; it was an eye opener for me. Looking back, I wondered how I had lived fifty years with a birthmark, the most complicated –Arteriovenous Malformation of my pelvis and leg including my right foot.
My parents told me, as an infant I started passing fresh blood with stools. The more I grew the quantity of blood increased. A surgeon in Kashmir did a major surgery presuming it to be hemmorrid piles. By the time I was four, the surgeon had performed four surgeries on me. My parents tried everything to stop my bleeding but it continued to pour out and by the time I was ten years old I started having pain in my right leg, and within a year AVMs started showing on it with unbearable pain during winters. The doctors started treating me for varicose veins. By this time bleeding had become part of my defecation; painless fresh blood would pass every day. My parents took utmost care of my food, to maintain my hemoglobin but at times it would make me very weak and bed-ridden.
My activities in school would be restricted, but whenever I was given a chance I would excel. At the age of 17, one fine day my hemoglobin came down to 3 points and I was flown to Chandigarh for treatment at Postgraduate Institute of Medical Sciences in India. Before I could celebrate my 18 th birthday, I was diagnosed for Hemangiomas of Pelvis after a prolonged hospitalization. Dr R.N.Kataria with his team of doctors started preparing for my complicated and a life threatening surgery, a first of its kind in India. It took them about 20 days to finalize the modalities for the surgery. After eight weeks of hospitalization, January 18, 1982 I survived an eight-hour long surgery of my Pelvic Hemangiomas. A temporary colostomy was done. My Dad had slept for two and half months on the floor next to my bed and now took over nursing me post-operatively at home—from cleaning my bags to giving me a bath. I salute my Dad in heavens. After closure of colostomy, I started a new life. Without bleeding it felt so good and
I decided to prove myself and make a career in Philosophy, though the growing AVMs of my leg were a concern, there wasn’t any pain. Before I could step into the prestigious university of Oxford in the UK (which remained a dream) one fine day I found myself in a pool of blood. I could do nothing but remain motionless on the bed because I was alone in my room for eight hours. Local doctor referred me to Dr. Kataria. At this stage, twelve years after surgery, Dr. Kataria seemed helpless and referred me to All India Institute of Medical Sciences at Delhi. At the age of twenty eight, what any unmarried woman living alone who bleeds profusely has to go through in Indian society, only my Indian friends can understand.
My Dad again got ready to save me and we met Dr. V. L. Bhargava, a great gynecologist, who put me on hormone therapy. Bleeding stopped and I survived. In this struggle between life and death, Delhi and Chandigarh I met my soul mate. And he proposed to me when I was on death bed. I started laughing at the man in uniform. The soldier in him would not let me die and he married me. We are blessed with a beautiful daughter who is now 16 year old. This bundle of joy of ours was taken out by Dr. Bhargava from a huge bundle of AVMs in my pelvis – a miracle had happened.
In 2013 I lost my hero, my father. The loss created an emotional vacuum for me and age-related female problems started pouring in. During a routine medical checkup, a cyst was found in my right ovary. At the same time, numbness in my foot and unbearable pain was giving me sleepless nights. There would be no pain while walking but while lying down on bed I would cry with pain. Medical professionals in India could not find the cause of pain. It was frustrating and I was losing hope. I surfed the Internet and to my surprise I got to Vascular Birthmarks Foundation. Vascular Birthmarks Foundation is a blessed non-profit organization working for the people, anywhere in the world suffering from a birthmark. I wrote to the founder and the president Dr Linda Rozell-Shannon. She is an angel in disguise. She began the work for the treatment of my leg pain and I registered for the 20 th year gala celebration of VBF held in New York on October 9, 2014. I and my family traveled to New York and after the celebrations, Dr Robert Rosen did the procedure on my leg on 13 th October in Lenox Hill hospital, New York City. All medical expenses were arranged by VBF which I would not have been able to bear. I was relieved of pain.
It does not end here; my ovarian cyst was growing in size which needed immediate medical intervention. But for the AVMS in the area of the existing cyst, renowned surgeons in India were not confident to operate upon me. Again VBF helped me through medical advice and the doctors at Breach Candy Hospital at Mumbai carried out another life challenging surgery. I am alive and happy!
Today is Vascular Birthmarks Foundation World Awareness Day. I salute Dr Linda and the team of VBF doctors!
Jai Ho VBF!!!