The BT Shunt Conundrum

[Blalock Taussig Shunt # is a surgical procedure done in new born kids with cyanotic congenital heart disease, otherwise called the blue babies. The disease is caused by a variety of anomalies in heart development, all resulting in poor blood flow to lungs, thus leaving blood deficient of oxygen. BT shunt is a palliative procedure till the child grows up . It involves making a connection from your aorta(the vessel that supplies oxygenated blood to your whole body) to pulmonary artery(vessel that supplies impure or de oxygenated blood to your lung). Challenge in managing a BT shunt is balancing the flow through the shunt. If too much blood goes to lung, rest of the body is deprived of blood flow leading to complications. If too little blood flows to lung, the oxygen content remains low and whole surgery goes in vain. This relative flow is maintained by different medicines which can increase or decrease the flow through either system]

Making choices are the biggest challenges in life. In many real life situations, there is hardly anything black and white. There is no absolute right or wrong and at times, either choices can make you regret later. At some point of time, we all regret at the choices we made, as well as the ones we didnt make. At times money or rather lack of it helps you choose a default decision.

One day, a young Nepali lad, may be in his early twenties popped up in my OPD with his wife, probably in late teens and a 7 day old baby. Baby was Manisha, named after the most iconic Nepali beauty in India. She was indeed beautiful, except for her dusky blue colour.

She was sleeping in her mothers arms. She  had a yellow butterfly cannula * loosely hanging from her left wrist.
She was one of those kids with a congenital abnormality of heart called Tetrology of Fallot more commonly called a blue babies. Her oxygen saturation level was 70%, barely survivable, way below 98% of you and me. Any time it can further spiral down, some thing called a spell,  even claiming her life.

I knew exactly what she needs, a BT shunt.

But in starred subscripts I have to mention, "conditions apply". Firstly its only a bridge procedure, only till she over grows her shunt, warranting a further surgery, probably a couple more depending on how her heart develops. Her brain is already deprived of oxygen in most crucial period of growth which could have already hampered her cognitive development. She will bear a centipede scar on her chest and branded as a heart patient for a life time. Even a successful surgery means some 5-6 hours work of a dedicated team, advanced infrastructure, some 20+  medicines and intensive care for at least a week. Translate everything to financial terms, it becomes a fairly huge amount even for a middle class family, let alone for a partially employed migrant family.

Almost all treatment for kids are now covered by some scheme name RBSK started by silent Manmohanji. But that is applicable only for Indians, that too in Government hospitals.

I hope Manisha will come back, somehow with the money for her BT Shunt. But I am also quite unsure how that will alter their family dynamics. They might pledge all their possessions and divert all their resources for this particular event such that finally they all suffer and die of poverty. If they have any other kids, they will also suffer for her sake.

Its not just one Manisha, it happens in lot of scenarios, particularly those suffering malignancies. There are scores of people who end up spending their life savings for a couple of years of life of suffering. The act of balancing cost effectiveness of a treatment is a big worry.

Unfortunately, docs are not good economists. We are realistic dreamers. We prepare to embrace the worst while wishing for the best.We wish to try out even the last arrow in our arsenal before accepting failure.

Once upon a time my IIM graduate friend told me that cost of life is just the cost of replacement. He might be correct in a sense. But I dont know how and at what cost, someone can replace his dad or mom or kid.

I really wish we had a formula, a mechanism to measure the realistic value of life, not to buy or sell, but atleast to help us decide how much to spend, and may be when to give up.

Just like how much flow the BT shunt should have....



Tail piece: Try those links if it was too technical. Last one is an HBO original movie about first BT shunt.

#https://en.wikipedia.org/wiki/Blalock-Taussig_shunt
*https://en.wikipedia.org/wiki/Winged_infusion_set
https://www.youtube.com/watch?v=dh2TB1M0mY0

Brevundimonas Diminuta

Brevundimonas Diminuta is a Gram negative bacilli.Rarely thought to cause any disease.Hardly a dozen reports of it causing clinical infections so far. If they grow in a specimen, they call it a contaminant. But if you are so unlucky to undergo 4 heart surgeries at 5 years age, treated with 7 different parenteral antibiotics over 2 months and send home twice telling that nothing can be done, could it be the one killing you?  


Let me call her Sarah and let me tell you right in the beginning that this story doesn't have an end.

I got a call from a nearby hospital two months back, telling that one of our old operated patients is there admitted in their ICU and asking if we want to take her over to our side. Being a resident in a highly specialized unit, I was supposed to be the first one to respond. I collected her previous records and discussed with my chief. It seemed that he knew much more than what was in the documents. Just as I mentioned the name he started telling me the whole story, a complex congenital heart disease with only one ventricle, how they did a 2 stage procedure and had to abandon the second stage mid way through surgery as her heart failed to pick up, and they ended up doing a palliative surgery. I saw desperation in his eyes. He asked me to go with one consultant and to explain the parents that nothing more can be done.

We went there. A little dark girl was there, with a tube in her chest. She was probably in cardiac failure with sepsis. We explained that we had nothing more to offer and came back.

Three weeks later the parents were in my OPD. She was planning to be discharged to a palliative care center. I took the file again to my boss and to my surprise he asked me to put her in. We went on doing a full re evaluation,She had developed a pseudoaneurysm, a thinned out sac like projection from ventricle, at her previous surgery site, which was taking all the blood her heart pumps.The strange combination of problems is  unreported in medical literature.

Unconventional problems require unconventional responses. Two more surgeries were done in the next week, repairing of pseudoaneurysm and closing a leaking valve. It was as if my boss and his team was waging a war against fate, bringing out everything in his armamentarium.

She will do good some days,sit up and even tell bigger kids in nearby beds how to do chest physiotherapy to get well soon, drink kanji with pickle and paint with crayons in a colouring book gifted by her attending nurse. At times she develops breathlessness on lying down, racing our pulses high and forcing some emergency responses.

It was in one of those days, our microbiologists reported that her samples had grown Brevundimonas diminuta. They thought its a contaminant. Frankly speaking, everyone of us was hearing that name for the first time. We checked the literature. There was hardly a dozen reports of this bug causing a clinically significant infection.

But if you are unlucky enough to get such a long history in such a short time what are the odds that a are infection is insignificant? Any way she was started on antibiotics.

But the question is why do some people get such a rare fate?

I always wonder what does she think, about herself, her parents, about world as such. Does she know that there is something called death. Does she believe in fate. I dont dare to ask. I want to beleive that she knows nothing other than that she has breathlessness and we are trying to get rid of it.
But kids are hardly predictable.

Everytime I pass her, I realize how lucky I am. I have spent 3 decades on earth, I have my own troubles, but everything is minuscule compared to her fate, and that of her parents.

As I told you right in the beginning there is no end for this story.She is still sleeping in our ICU, hugging the pink teddy our anesthetist gifted her with her slender arms having an IV cannula and oximetry probe.