A Sunday afternoon with Ila

BerkeleyAug9 057Her parents had asked us over to Berkeley Marina to picnic with 16-month-old Ila.  On a clear day, they say, if you look hard,  and far enough into the waters,  you could even catch a glimpse of San Francisco Golden Gate Bridge from the spot where we picnicked. To be precise, the picnic  invite was for my grandsons – Nikhil,18 months, and Sidharth,three years – and I tagged along, as live-in cheer leader,  always at hand to marvel at their playfulness.

On this Sunday afternoon, however, the person I came to marvel was Ila –  her ever-smiling face, her observant eyes, indeed, her very presence among us on the outdoors.  The last time I saw her, nearly an year ago, Ila was no more than a breathing bundle of tissues and bones,  with a smile nonetheless, sustained by medicines, and sheer tenacity of her parents.Her father Srinivas attributes Ila’s remarkable recovery to  “too much fight in the little girl to let adversity, unspeakable pain, and a constant threat to life interfere with her sense of fun”. 

I had little knowledge of Ila’s medical condition till I read her father’s blog.  Last updated in April, the blog gives a perceptive account of Ila’s state of health and the state of mind of her parents.  When she was barely eight weeks old Ila was diagnosed,  and she went through a five-hour surgery for Biliary Atresia,  a medical condition pertaining to malformation of the gall bladder and bile duct. The liver fails to drain the bile salts into the intestines, resulting in cirrhosis. The surgery Ila had to go through,when she was no more than two months old, was a “frighteningly long (5 hours) marvel of medical procedure” with an intimidating name – Kasai’s portoenterostomy.  As she was undergoing this surgery Ila’s father, waiting it out at the lobby, ‘went through a thousand kinds of hell’  at the thought of her pain and heartbreaking predicament.

And a million more hells were to be endured yet,  in the coming weeks and months. I recall Meera,  my daughter-in-law and a doctor, telling me that during the weeks following the surgery Ila’s fluctuating health condition necessitated frequent spells of intensive care at the  hospital. She showed signs of mild jaundice at the age of 5 months, and also ‘a sub-optimal growth’. This was an unmistakable pointer that Ila  needed a liver transplant.

What  followed in the lives of Ila and her parents  is best described by her father:  Ila’s condition deteriorated at record speed…Maya and I were told we needed to be assessed to be live donors. Ila was admitted to the Lucille Packard Children’s Hospital.

BerkeleyAug9 031After scores of tests done on Ila and her parents Maya was chosen as the live donor of the left-lateral lobe of the liver.Dr.Waldo Concepsion came out of the examination room describing ‘how gorgeous Maya’s liver is’. Dr.Carlos Esquivel,who did the transplant,  pronounced Ila’s  ‘the sickest liver I have seen in a long time’.  Of the team of surgeons Ila’s father had this to say – “I would gladly surrender my ego to these Gods and offer them my life long servitude if I did not know it would only embarrass them”.

Memo to blogger Srinivas: Those concerned with the ongoing healthcare reform debate would benefit from your perspective on the functioning of the prevalent system.

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5 Responses

  1. My personal experience with the US health care system has been quite close to ideal in spite of being at the mercy of insurance companies. This is partly on account of my being in academia. Academics are not very well paid but have very good health benefits (I call it the “keep them poor but keep them healthy” policy). I first took advantage of it when a couple of years ago during a routine medical exam I was diagnosed with a congenital structural defect in my heart called Atrial Septal Defect, which needed surgical repair. I underwent open heart surgery at the Cleveland Heart Center (one of the best institutions in the world for this sort of thing) and the whole thing (from a financial point of view) was quite stress free. Maya’s pregnancy and of course the ensuing drama with Ila’s condition have all been very well taken care of thanks to my insurance coverage.
    Having said that I do not deny that there are very obvious flaws in the system. There is very little accountability for the insurance companies and they CAN get away with a lot. The emphasis of the insurance companies in every case I am told is on how best to either evade or minimize payment. This is obviously alarming from a patient’s or a care giver’s point of view. In our case the medical issues were big enough that most of the haggling was done by the auxiliary help on the teams (Ila’s transplant team at Stanford, my cardiovascular surgery team at Cleveland) and Maya and I came out of it relatively unscathed. We have however heard horror stories about the trials and tribulations of other less fortunate people in similar situations and therefore are aware of the shortcomings of a machinery that definitely needs ‘reform’.

  2. God Bless little Ila

  3. Human will to survive and our toughness – witnessing it brings out the best in people all around. Even far away as us. Thanks GVK

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