One Baby’s Heart and So Many Questions!

Talking it over with Seema Aunty

Talking it over with Seema Aunty

Tuni is her name, but I added “Harrison” as I do for the kids with disabilities who have no surnames.  Having a chart read, “Baby Tuni” is not as good as “Tuni Harrison.”

Tuni is about seven months and has Down Syndrome.  At about three months of age she was hospitalized in a government hospital about four hours from Kolkata.  I don’t have records of why she was hospitalized, but we were told her family never came back for her and never responded to calls from the hospital.  That district has no facilities for children with disabilities, and was one of the children the Child Welfare Committee pleaded with me to take.  We picked her up last week, on Friday, the 19th of July.  I knew in taking a child with Down there was a possibility she would have other medical problems including heart disease.

Today I took her to Medica Superspecialty Center to see the pediatrician for a check-up and to start whatever investigations were in order.  Tuni was a charmer.  Yes, she has heart disease.  She was seen by the pediatric cardiologist, the same one who saw Ganga in the past.  He did a brief echocardiogram, enough to see that she has a “complicated heart situation.”  Tomorrow I take Tuni back for  a more thorough testing under sedation.  And then we will talk… as the doctor put it.

So much goes through my mind. Is it fixable?  What will it cost?  How will we manage it all?   I dare to even think, should we do it?  And then I get mad at myself for even asking.  I think about her family.  Maybe this is why they abandoned her.  Maybe they couldn’t afford treatment.  Maybe a mother is mourning. Or, maybe it was just the Down Syndrome… but they did put her in the hospital.  I hold no judgments any more.  This is a harsh place with harsh realities.  You don’t take a child to a government hospital unless you have no other alternatives.

This work has changed me too.  I now more easily see the person separate from the illness.  When I hold her and talk to her, I ask her, “What happened to you, Little One?”

Looking worried... with reason.

Looking worried… with reason.

Good night from Kolkata at 12:50 am.  I need to get some sleep before the day begins.  Lots on my mind….

July 2013
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