Raising Ganga – A Middle Chapter

“Raising Ganga” should be a book one day.  This is just a middle chapter.

Today we were driving to Apollo Hospital for Ganga’s check-up, I kept thinking of the harrowing and frightening drive there just eight days earlier, late in the night, as Ganga had thrashed, cried, kicked, yelled, and could not be soothed.  Whatever lingering doubts I still had about having wanted her in the hospital have now disappeared.  Ganga was clearly back with us, with her naughtiness intact.  We had some answers, but even more important, she was better.

I’d intended to post a blog when we brought her home.  I wanted to thank all the people who had written and messaged us on FB, and who sent their wishes, prayers, and told us of crossed fingers and toes.  Ganga loved hearing about their messages.  And I was immensely strengthened by the support.  Well, WordPress disappeared the post after I’d worked on it for seven hours. It’s taken me this long to put it together and add what we have learned.

CPSS-1542_WAs background, Ganga originally came to Shishur Sevay by the West Bengal Child Welfare Committee on 22 February, 2007 along with six other of the girls.  She was said to be 3-4 years old and weighed 7 kg.  She was floppy, unable to use her limbs or lift her head.  We received no medical information or history, other than the name of the hospital she had been prior to the government institution. Posts about her are listed in the Category “Ganga”

Last Wednesday Ganga became incredibly agitated and could not get through any of her classes.  She would be kicking, calling out, thrashing, laughing, crying…. and she was like this more of the day.  She didn’t want to use her eye tracker.  She was just miserable.  A few months ago we had started treatment for absence seizures.    Three years ago the neurologist disagreed even though the EEG showed changes indicative of epilepsy.  It took trips to three hospitals before anyone could sedate her enough for an EEG. Then a few months ago we started with new doctors, and initially she had major reactions to two of the medications, and was not any better.  So a month ago we took her off all meds, slowly, and she was relatively good for three weeks.  She again became miserable and irritable.  Then last Wednesday night we were totally unable to calm her down.  She had been unable to sit through classes, even Bengali class which she loves.   I felt helpless and afraid, knowing it wasn’t so simple to get medical care in the night. I didn’t want to be carrying this alone, and I was afraid I was missing something.

Ganga’s neurologist was out of town, but we were able to arrange for an admission, (we thought) which would mean we could have an EEG the next day.  We have no insurance, and the hospitals are eager to fill beds.  Once there we discovered that the ER team had to do their own evaluation.  After exam and routine blood tests they told us to take her home, that she was just irritable, and come back to OPD the next day.  I argued for her admission, and they said they could keep her for 24 hours but it would be in a general ward and no one could be with her and since she was thrashing about they would have to put her in restraints.   That refrain still haunts me, that they would put her alone, with no one she knew, and no one who could communicate.  So we got ready to leave for home.

Ganga and her Didi in the Emergency Room. Ganga was alternatively angry, frightened, and thrashing about.

Ganga and her Didi in the Emergency Room. Ganga was alternatively angry, frightened, and thrashing about.

Then the ER docs reached the doctor who was supposed to be the admitting doctor.  He told them that she had to be admitted to the PICU for 48 hours and in restraints.  No one could be with her.  No, we couldn’t have a private room.  Again, I said we were leaving.  The doc said, “We can’t let you take her.”  In the US this could be literally translated, so I asked whether he would call the police if I tried to take her out. “No, we won’t but you will have to sign that you are taking her against our advice.”

“I’m signing nothing.  I’m paying my bill and leaving with her.  An hour ago you told me she didn’t belong in the hospital, and now you say the PICU for 48 hours and NOTHING has changed except who you spoke with?”  I asked for the ER bill and then amazingly, they said she could be admitted to a private room and one person could stay with her.  I  lifted her off the bed just to demonstrate my ability.   In the end though, Purnima Massi and I both stayed.  The admitting officer gave us two passes, and we ended up on the Platinum Wing.  I was really worried about the cost, but I put the deposit on my American Express Card, and we were in.

Ganga thrashed in the night. They started an IV and said someone would have to hold her hand all night to make sure she didn’t take it out, AND, to make sure it didn’t bleed on the linens.  By 3 am they started a new anti-epileptic drug IV.  She just kept thrashing and moaning.  I would hold her hand and doze off through the night.  Sometimes she thrashed and called out.  I was grateful we were there.Holding her in the night, making sure she didn't rip out the IV.  There was a couch in the room, and Purnima slept there. By about 5 am we were sleeping and no one really bothered us for a few hours.

Morning rounds had a surprise for us.  The pediatric cardiologist who had evaluated her some years ago at Medica, and who had taken care of Tuni came with the other doctors.  He had been in the labs in the morning and heard someone talking about a patient named Ganga, and he thought it had to be our Ganga.  I was really thrilled to see him and his knowing us changed the atmosphere.  Now they understood about Shishur Sevay and about me.  The doctors all laughed now as i told my stories of how I had challenged the ER docs.  They apologised, and the head doc said, “I’m just sorry it happened to you.”  I said, “Don’t worry. It’s OK.  It’s my karma.”

I think the medication was helpful and Ganga was calmer when she woke in the morning.  Later on Thursday she had the MRI.  I was allowed to go in, and then invited to sit with the docs and watch through the glass and see the images.  Out in the hall they had said I couldn’t and Ganga looked at me fiercely.  I whispered to her, “Don’t worry.  If they insist on no, I’ll squeeze under the door or up over the ceiling and I’ll be there, even if you can’t see me.”  She grinned.  She understoodOn the stretcher about to go into the ambulance between MRI and EEG..   And what I said to the doc was, “I’m really asking you please to let me go in. I’m 72 years old and I’ve decided that having some peace of mind is really important.  I know she will be fine, but I will be at peace if I’m there and I won’t be if I’m sitting in the hall worrying.”

Friday morning she got her “naughty” back.  The nurse came in while I had her up sitting on the bed.  The nurse put the thermometer under Ganga’s arm, and turned away.  Ganga immediately raised her hand, watched the thermometer fall, and grinned. She had her naughty self back.

By now we felt there was nothing acute going on and it was time to try and talk with her by Tobii (her eye tracker device).  Purba came early with Ganga’s Didi, and they set up the Tobii.  Ganga usually prefers I not be involved.  She wants to talk to others.  So first on Tobii she chose all the people she wanted to come and visit.  She did NOT want to go home but definitely wanted everyone to visit her in the hospital.  The message bar at the top of the screen shows thumbnails of all the people she had chosen to come and visit.

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And then the doctors came on rounds while she was on Tobii, and so she spoke with them.  She asked, “Where do you live?”

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She next asked, “What do you do? “The doctor explained his work taking care of children.  It took him a while to understand she wanted to give him her hand, but he finally got it.  She is a patient teacher.

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When she then said, “Come again,” he laughed and said he thought it was time for him to leave.  What he said about her was that it wasn’t that Ganga wasn’t ready for the world, but that WE are not ready for Ganga.  He said she would have to teach us and I said, “that’s why she is here.”  He seemed startled and I just said, “Yup.”

We used Tobii much of the day, simply used the time  as a teaching opportunity.

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Most of the time Ganga seemed fine, but sometimes she was just miserable.  I have some thoughts about it all.

The MRI was essentially unchanged from three years ago.  For the EEG we only have a preliminary report that there were no spikes, unlike the one three years ago.  That’s good, if true, but even more important it means there is nothing neurologically major going on right now, and that is a huge relief.

They would have preferred we stay til Saturday morning, but I really wanted to get back to Shishur Sevay.  She had started the oral medication and was doing fine with it.   I wanted us home, in bed, waking up for Saturday morning Dance & Movement. We reached home by midnight.

A week later I’m even more certain about my thoughts.

1.  Since starting the medication she has had no staring spells or fearful looking at the distance.   So I think she was having absence seizures and this is the right medicine for her.

2. I’m certain she has Pseudobulbar Affect:  PBA is a neurologic condition characterized by uncontrollable, disruptive laughing and/or crying outbursts that are often contrary or exaggerated to the patient’s inner mood state.   Ganga still has bouts of uncontrollable laughing or crying, or a mixture.  Rani bit her hand and she started laughing and then crying and laughing, and couldn’t stop.   This has gotten worse over the past two years, but I’ve not been able to get the attention of the doctors on this.  Now I have their attention.  There is a relatively new medication, Neudexta, cleared by the FDA, and available in India.   PBA was part of what was going on last Wednesday.  We will begin treatment for this.

3. Ganga has often spoken up when girls have talked about finding their families.  She has insisted on joining the conversation, and what we can understand, she does remember her time before Shishur Sevay and she does want some sort of contact.   When she came, she would become really animated at the sight of any old people in white, reach out to talk to them, and puzzled when they didn’t seem to know her.  Records show she was in a hospital in Digha before transfer to the Government institution, and then to us.  When we were on vacation at Mondarmani Beach, we also went to Digha for a few hours.  She didn’t want to go, cried, pitched her body backwards.  We just thought she didn’t want to leave the beach.  When we finally left Digha, we realized we had been sitting along the water in front of the hospital where she had been that we put it all together.  Some records should be here in Kolkata but we have not yet been able to get them.  It will be a long process of trying to get the government to release the records, but we have to do that.  Searching for Ganga’s roots will certainly be another Chapter of “Raising Ganga.”

This has been a time of a lot of adoption talk, with Judi Kloper here, and then Reshma McClintock, an Indian adoptee with her film crew as she returned to Kolkata as an adult.  We don’t know what Ganga heard, or what she heard other people saying about them, or about adoption.  Both these issues, her past, and a lot of adoption/birth family talk may be why she is suddenly far more clinging and dependent on me.  We need to set up some Tobii pages for this.  This week all the girls talked about the areas they were found, and one remembered the village she was from.  It’s only taken eight years.  We will be putting up a map of West Bengal with markers from where each has come.  Ganga’s will be Digha.

5. Ganga is not at all at peace with her limitations.  She wants to talk and she wants to walk.  She is angry.  Last week she insisted on walking out the gate (she yelled at the guard to open the gate) and went in the lane and “chatted” with some of the local women.  I have video of it all.  All it needs is editing (and time).  Maybe we can skype with kids who have CP.  She wants a social life.  When she wanted to go to South City Mall, and we took her, she spent the time talking to sales people.  She looked at clothes but didn’t want to buy anything.  She misses school.  I can’t get her into any school here, but we have to find a way to create a better life for her here.  I hope one day to be able to create opportunities for her in the US, or Australia, or Germany, or elsewhere accessible, and more welcoming of people with disabilities.  I say this with sadness, including for the Indians who are equally upset with what goes on here.  Ganga is moving into the preteen years so we are dealing with hormonal changes.   When she was in school she always had a group of girls and boys who looked for her, talked with her, missed her when she wasn’t there.  Ganga wants to get married one day.  She wants a life like others.  In a staff meeting this week we talked about trying to pull together some kids just to take them to the mall once a week.

6. Ganga is a tense and stressed person.  She worries about tests, performance of any sort, and we need to find ways of her relaxing.  Her first real episodes of the PBA and absence seizures were when she was in school and had exams.  She needs to chill, but as we all know, that’s not so easy to do.  We have people coming to volunteer who do yoga and storytelling and I hope that will help her.

Looking back, I was afraid I was missing something medically.  I was just plain afraid.  As I write this, I realize how much I needed respite from sole responsibility for what was going on with her.  I needed to feel that help was a call button away.  And I needed to be able to focus on Ganga completely.    So I guess Ganga and I are both better.  We have some answers, and plans on how we approach her needs, and I have gotten some relief.

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Ganga is here to teach us……

 

 

The Anguish of Seeing into the Future

Torment has taken up residence in a part of my soul.  Most of me is OK.  Life does go on.  The people around me would probably describe me as a bit sad, distracted, able to come out of it, and then returning, in quiet to this terrible place of loss, and also of confusion…. the work of “framing” the experience of Tuni’s brief life and her death.  And then, central to my anguish, is The Dream.

The canal

The Canal

This is the canal I saw in my dream the night of 10 August 2013.  The photograph is taken from the window of the Operating Theatre during her surgery on 13 August 2013.

I dreamed there was a canal in front of me.  It was night.  On the other side, dead babies were being put into this canal one after another, floating downstream in the murky water.  I was standing on this side, holding Tuni in my arms. Seema was with me and   I was screaming and screaming, “No, not my baby.  She is different!  She is different!”  My baby would not be put into that canal! I can still feel and hear myself screaming.  I’ve not stopped screaming from the center of my being.  I can’t.

Monday 12th August we admitted Tuni and took her to her room.  I looked out the window, and there was a canal, but not exactly like the dream…. Still, I was upset.  Yes, I thought of taking her out…. I spent the afternoon with her.  I’d hoped for some “quality time” with her but she slept most of the day.  I guess it’s what she needed. I lay next to her and took pictures of us with my phone.  It was a time of just being in the present, and the peace of being with a sleeping child.

Tuni sleeping the day before surgery

Tuni sleeping the day before surgery

She woke in time for me to feed her.

Feeding Tuni

Feeding Tuni

In the evening the massis she most enjoys came to replace me.   They played most of the night and in the early morning Tuni fell asleep.  She was still asleep when I met up with her in the pre-op room.

I had asked the surgeon if I could watch the surgery and he kindly agreed.  In the morning he met me in the pre-op room and then took me around, showed me the cardiac icu (It has a different name there) and introduced me to doctors in the lounge.  I changed out of my sari and into scrubs… hair covering, and mask.  I felt right at home.

Back in "scrubs" after many years

Back in “scrubs” after many years

Surgery went well for the first hour.  The shunt was in place and they were starting to close.   I was about to sms downstairs to Seema and the rest of Shishur Sevay  that I’d be down soon, when suddenly her oxygen concentration fell….. I sensed everyone in the room was shocked to see the numbers on the screen fall. I felt like the hand of fate had just gripped the surgeon, frozen us in the space and time of the dream,  It seemed like the moment one problem seemed resolved, there was another.  The shunt developed a kink, a blood clot was found, even though the heparin had been given.  Her heart stopped and they got it going again.   Over the next five hours they put her on heart lung machine, pacemakers….. I’m not sure what else.  It was quiet and the doctors talked in Bengali,  I was just grateful to be there, but also frozen in re-living the dream.

I was spending most of my time at her head, looking over the drapes, and just resting my hand on her forehead.  There were staff there who wanted me out and tried some ploys I resisted…. but then finally another surgeon insisted I break for lunch, as they had brought lunch to the floor for me.   I dutifully sat in the Doctor’s Lounge and ate the sandwich and pretended I was in a normal situation in a normal life. Once back in the OT  I put my hand on her forehead.  It felt pasty; she was alive but her spirit was no longer there.  I stood there silently screaming to the universe in protest.

I went to the window of the OT and saw the canal, the one I’d seen in my dream.  I took pictures of the canal, and the reflections of my bangles.  I took pictures  and silently went on screaming.   In the dream I’d screamed that my baby was different, so that was enough to me to believe that maybe she was close to death but hadn’t really died.  And that is how it played out over the next 16 hours.

Tuni went to the cardiac unit and we came home around six pm.  About two hours later the anesthesia dept called and said Tuni had arrested, and they were working on her.  Seema and I, and her son rushed off back to the hospital, about 45 minutes away.  In the taxi we talked about the possibility of her death.  In the Hindu tradition, children up to five are buried, not cremated.  We arrived to find that she was now doing better, her heart going on its own.   We came home, and the next call was at 7 am the next morning.  They were working on her again but didn’t think they would be successful.  They said to come in.  Tuni lay there with an ever so slight smile on her face.  I just held her and cried and cried, as I have so often since she died, as I cry now as I write about this.

Holding Tuni after she died

Holding Tuni after she died

The conflict in the dream about where she would be buried played out in reality.  The hospital and everyone else told Seema that the place to go was the burial ground in Topsia.  I can’t explain why, but my baby was NOT going to be buried in Topsia.  I don’t like the area.  I think Seema thought me quite mad, as I kept insisting I’d heard about a Hindu burial ground on the road the girls take to school each day. I was sitting in the car, Tuni’s body in my arms, determined that she was not going to Topsia.  However it was Jojo, Seema’s son who found the Hindu burial ground near us.  I’ve written about it in an earlier post.  The next day, when Shanti Devi came in the morning she talked about the Topsia burial ground, and the wild animals who inhabit and desecrate it.  I just knew….. sometimes I just know.

I miss Tuni terribly.  In the Hindu tradition I’m supposed to let her go, so she can travel unhindered by ties pulling her back.  I’m not doing very well at that.  I pray for her safe journey while I also call for her to be back in my arms.  I tell myself I did everything I could, but I still feel inside I let her down, as I’m sure every parent feels when a child dies.  I had a bit of “reality check” as I was looking through pictures to use for this post.  This one is from the OT.

Tuni in the Operating Theater,

Tuni in the Operating Theatre.

I think I’ve resolved that I did all that I could.  It’s hard to look at that picture and not feel I did what I could, and so did everyone else who tried.

I decided to post my favorite picture of Tuni.

Tuni with her sisters, right at home at Shishur Sevay.

Tuni with her sisters, right at home at Shishur Sevay.

I think about her a lot.  I ponder all the obvious questions about destiny and fate.  She was an incredible light that filled us, all of us who knew her, all of us who got to know about her.  Suravi  Changlani, who interned at Shishur Sevay wrote a beautiful tribute to Tuni.

Suravi's Trubute to Tuni

Suravi’s Trubute to Tuni

Dreams such as this one are not new to me.  When I was delivering babies I would sometimes have dreams about the baby’s condition.   I published an article about my dreams in Mothering Magazine, sometime around 1980.    I once dreamed that I went to the home of a patient of mine in labor and there were three chickens wandering around in the kitchen.  I’d never been in her home.  When I went there later in the day because she had gone into labor, there were three wishbones on the kitchen window sill.  But I’ve also had times of just knowing about things that would happen.

Looking at the pictures for this post, and thinking about the last few days of her life, I think now that the dream came from her.  She needed to tell me.  She needed to let me know, for her sake, for her not to feel so alone as she faced death.  She needed me to be her mother.  She always knew her life would be short.   I’m someone that babies can talk to when I’m asleep and I hear what they are saying and I remember.  She needed a mommy to tell.  Tuni needed me to bury her in a safe place.  Somehow that must have mattered to her.  She let me know.  I listened and did as I was asked.

I’ll close this post with a quote from my report to the Child Welfare Committee,

“Tuni would not have survived without surgery, so she had a chance at life here. We take comfort that this child once tossed away in the bushes found love and family at Shishur Sevay.  While her medical chart in Asansol read “Baby Unknown” her chart at Medica Superspecialty Hospital read “Tuni Harrison.”  She died with a name, with a mother, sisters, aunts, uncles, and with dignity.  May all this help her on her journey back to the Gods.”

Sometimes I just can’t stop crying.  I miss her so much.

HEARTS

Tuni will need to have her heart repaired.  She has a congenital heart condition, a variation of a Tetrology of Fallot.  Every medical student learns about it, almost like a rite of passage.  In those days there was only palliative care, surgical procedures to extend life.  Now there is surgery to FIX it!  In time Tuni will have this surgery.  The doctors here prefer to wait until the children are a year old when the survival rate is higher.  If she develops symptoms, like cyanosis, or her development doesn’t progress, then we will have to do it sooner.  For now we just feed her up, keep her happy, and watch.

We have been scouring the few papers that came with her.  I was trying to find out why she was originally admitted to the hospital last April.  I would like to know her weight at the time, and what symptoms presented.  But in looking into the papers, the story we had been told didn’t seem to make sense.  If she was brought in by her family then why was she “unknown baby” from the beginning?  She would have been admitted under a name.  Then we found in the police papers that THEY had been the ones to try to contact the family, including by email.  Or, maybe those are just the standard words used for a baby found somewhere.  I saw this in adoption papers all the time, words about an unmarried young woman abandoning her child… The words were exactly the same in each file.  But for the adoptee the words were specific and personal. Those words became part of their narratives.

If you read my last post, and comments on fb, we tend to create narratives, weaving together a few facts with many speculations.  Was the family poor?  Did they know she had Down’s?  Were they all agreed or was the mother mourning? In fact, we have no idea whatsoever. Maybe we will find out one day.

Earlier this evening I was talking to Tuni, tickling her, making funny faces… She is so responsive, so happy for smiles.  Anyway, I told her I thought she must have a really interesting book to write — about her life… about being here and there, about hospitals, and police, and she just giggled and giggled as if she understood every word.

My heart runneth over.

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Tuni, Archi, and Me

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….

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