If my daughter is operated on, she will die. So if someone has an advice for me, please let me know through this medium.
Manoj Kumawat, 32 years, Tour Guide, Jaipur
Interviewed by Poorva Dinesh
Why did you decide to speak on health?
I have two children – a boy and a girl. My daughter has a heart problem. In medical terms, it is called VSD (Ventricular Septal Defect). When she was six months old, she got pneumonia. I took her to a child specialist here in Jaipur. The doctor told me my daughter was too young to get operated upon. After six months, I felt I needed to pursue this and show my daughter to a heart specialist. I took her for an ECHO test (Echocardiography). The technician conducting the test asked me how much I earn. His question made me a little apprehensive. I decided to take her to the heart specialist that day itself. The doctor told me I was late in getting her and doing the operation wasn’t possible anymore.
There is a hole in the wall that separates the two parts of the heart. The good blood has got mixed with the bad blood, the heart speed has increased and the problem has reached the lungs. So basically the operation cannot be done. I went to the best of doctors and big hospitals, showed the files to all senior doctors…She is eight years old, but we still haven’t found a cure.
So nobody has a solution to this problem?
Not yet. All senior doctors I met told me there is no treatment for this. If my daughter is operated on, she will die. So if someone has an advice for me, please let me know through this medium. It’s not like I know too much about this field; I have consulted all the well-known doctors and hospitals, but I haven’t really got a positive response from any of them.
Do you live with this thought every day?
Bilkul Madam! She is my daughter; we are bringing her up….as we see her get older… (trails off)
How is her everyday life?
No no no…waise there is no problem. Anybody who sees her won’t be able to tell that she has any disorder. She plays, laughs, talks just like a normal child. She does all her activities, but if she runs a lot, she finds it difficult to breath. How will she know she has a problem…
Does she know about the problem?
No. But she complains to us, “Mummy and Papa, bhaiya doesn’t take medicines, why are you giving me so many then…”
So she is on medication?
Bilkul Madam! We will have to give her medicines na…We give her 2-3 medicines every day. Her monthly medication is close to 2000 rupees.
Since I work as a guide, I meet a lot of doctors who come here, and some of them have even been heart specialists. I explained the problem to them and most of them have told me it’s not like she won’t live. She will live well into her 40’s and 50’s, may even live longer. She can even conceive after marriage provided she is put on a specific diet and takes care of her health. So I feel assured that my daughter won’t leave us and go.
Anyway, if anyone is reading this interview, and has an advice for me or can recommend a good doctor, please get in touch. I am willing to travel anywhere.
Tell me something else about yourself.
I have told you what’s closest to my heart…
I am sure any other issues in life seem so small in front of this one…
My only problem is this…I just want my daughter.
I had met a doctor in Fortis. I had gone to the extent of telling the doctor if a treatment was possible abroad, I would even sell my house and go there. My daughter always comes first.
What did the doctor say?
She said the only thing that could be done there was a lung transplant which she didn’t recommend.
What does love mean to you?
Love is very important to me. In fact, right now it means the most.
If you wish to reach out to Manoj, please contact him on 08233943504