Prediction of Death and Diagnosis

A year or two back I stumbled across a case which seemed to solve an ongoing medical mystery. I feel like recording it here in case it is eve proven correct so that I can say "I told you so" ;)

In December 2013 Californian girl Jahi McMath underwent a tonsillectomy. It went hideously wrong and four days later she was declared brain dead. Her family, however, refused to accept this and fought to keep her on life support. This 'futile care' was resisted but ultimately allowed...not least as people do not live very long on life support. In many cases, if death does not result from other causes, the dead brain will rot causing the body to expire from massive infection. Four years later Jahi McMath remains on life support, apparently showing none of the usual signs of deterioration. One of the most notable features of her case is the onset of puberty and menstruation experienced while brain dead - such developments being supposedly being unique to life, and controlled by the pituitary gland within the brain.

This has led to her family feeling vindicated and others questioning how death can be diagnosed if we still don't understand it. In September 2017 a judge even ruled that Jahi might still be legally alive (http://www.latimes.com/local/lanow/la-me-brain-dead-girl-20170907-story.html).

A year or two ago I was following a hunch when I felt that I had solved the mystery.

A child, identified only as TK, (Nicanor Pier Giorgio Austriaco in The Linacre Quarterly 2016: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102206/) survived for 20 years on life support / critical care, despite having been declared brain dead at just 4 years of age.

"He remains the individual kept on life support the longest after suffering total brain failure."

There is a condition, extremely rare but well documented, called Lithopaedion. When a foetus dies in utero it is usually expeller from the mother's body as a miscarriage or stillbirth. When this doesn't happen spontaneously medical procedures (D&C or induction of labour) are used. If left for an extended length of time the foetus will degrade and the mother will die of infection. In the case of a Lithopaedion this is circumvented by the mother's body sealing the foetus in calcium - somewhat like a pearl developing inside an oyster - meaning no infection can take hold as the baby becomes 'petrified' hence the colloquial term for the condition - 'stone baby' (Daniel Ramos-Andrade, Caterina Ruivo, M. Antonia Portilha, Jorge B. Brito, Filipe Caseiro-Alves, Luis Curvo-Semedo in Science Direct, 2014: https://www.sciencedirect.com/science/article/pii/S2352047714000082)

In reading the longer account of TK's condition - with autopsy results and imagery in case that bothers you - (Susan Repertinger, MD; William P. Fitzgibbons, MD; Mathew F. Omojola, MB, FRCPC; Roger A. Brumback, MD in the Journal of Child Neurology, 2006: https://hods.org/pdf/Long%20Survival%20Following%20Baterial%20Meningits-Associated%20Brain%20Destruction1.pdf) you may see the connection between Jahi and lithopaedion:

"the specimen [his brain] was seen to consist of a hollow hard-calcified shell containing mostly semisolid and some cystic areas [...] semisolid areas consisted of tan (and scattered intermixed orange, red, and brown), grumous, focally mineralized material, with no identifiable cerebral structures"

TK's brain had essentially been sealed up like a calcified foetus and I feel sure this will prove to be the case with Jahi McMath.

• TK brain death at age 4; Jahi brain death at age 13
• TK brain death from meningitis; Jahi brain death from massive post-operative bleeding
• TK 20 years of life support; Jahi four years and counting
• TK "developed minimal pubic and axillary hair but little other evidence of secondary sexual characteristics" - whilst the lack of full puberty is unsurprising the fact that hair growth occured at all is perhaps surprising; Jahi's puperty is reported but not in detail. It is likely that given her age at brain death these changes were already happening and occurred due to the developmental stage of her ovaries.

I may not be the only one to have realised the connection, of course. In researching this post I found an article listing TK and Jahi's cases in the same sentence yet somehow failing to address the likely connection:

"...there are at least 30 known cases of pregnant women having been physiologically supported for up to 107 days to gestate a fetus; a young boy meeting 'brain death' criteria was physiologically supported for 20 years; and more recently, a young woman has been maintained on home ventilation for over 3 years following the diagnosis of 'brain death'"

(Michael Nair-Collins, Franklin G. Miller in the British Medical Journal, 2017: http://jme.bmj.com/content/early/2017/08/28/medethics-2016-103867). Note the 107 days for brain dead pregnant women. And that's not 'just' because the women are allowed to expire on delivery of their babies - their medical teams usually have to fight to keep them alive long enough to deliver! In comparison, Jahi has been 'brain dead' for at least 1482 days so far. There seem to be no published dates for TK but 20.5 years is approaching 7500 days. (Dr Alan Shewmon in transcripted interview for The President's Council on Bioethics, 2007: https://bioethicsarchive.georgetown.edu/pcbe/transcripts/nov07/session5.html)

EDIT:

Jahi Kelis McMath passed away (permanently this time) on 22 June 2018 - four years six months and ten days (1653 days total) after she had originally been declared brain dead. She is survived by her mother Nailah and stepfather Marvin Winkfield, and a sister, Jordyn. A second death certificate indicates bleeding caused by liver failure. 

(Sources: CNN https://edition.cnn.com/2018/06/29/health/jahi-mcmath-brain-dead-teen-death/index.html Mercury News https://www.mercurynews.com/2018/06/30/jahi-mcmath-death-could-have-costly-implications-in-civil-case-against-hospital-doctors/ East Bay Times https://www.eastbaytimes.com/2018/07/03/of-jahi-mcmath-mom-says-that-little-black-girl-from-oakland-made-history/)

As legal cases remain ongoing at this time (September 3rd, 2018) results of full autopsy regarding the condition of her brain have not been revealed.

My hope is that her brain was calcified and she was utterly unaware of her incapacitation. I also hope that the court cases will be found in the family's favour and they will be compensated for their suffering and Jahi's lengthy treatments will be reimbursed. I don't know that I would like for her case to significantly alter how we define death. The body living on with no functional brain is, in my humble opinion, no life at all. However, my sincere sympathies are with Jahi's family.

Faith and Philosophy and Erni

I am currently working through the second of six text books on my current Open University course: A222 Exploring Philosophy. Book 2 is entitled 'The Philosophy of Religion' and it's giving me issues so I decided to write a blog entry on my issues of faith.

I was raised by agnostic parents. Both had been raised Church of England Christian but both had rejected organised religion. I don't think my dad ever cared for it but I recall attending church as a VERY small child - most likely no more than 3 years old. Religion - specifically Christianity - had very little place in my upbringing. I was sent to Girls Brigade (associated with a Methodist church) because there were no available places at Brownies; I attended a Church of England primary school for less than 2 years after I was pulled out of my previous school due to bullying (and left to go to secondary)...that was about it. Christmas wasn't a big deal in my family and what there was of it was definitely non-religious.

I remember being fascinated by religion - Cathedrals, temples, religious art, ancient faiths...but I never believed in the possibility of a God or Gods. I was most decidedly an atheist although in the 19 years since my epiphany my thinking on the subject has been somewhat forgotten.

Epiphany.The experience of sudden and striking realisation. Yes, that's the right word.

Today I had one of the most positive Twitter interactions in my 5 years on the site. It began with a comment I posted in relation to my OU materials:
I used to be an atheist. But listening to these atheists makes me cringe...such dumbarsery.
The atheists on the audio file may have had good and valid beliefs but the arguments presented were pure dumbarsery. Taken out of context I would have understood an atheist being quite pissed off with that tweet but a tweeter whose bio reads:

#Secularist #Humanist #Atheist #Skeptic #Libertarian

replied most politely:

What convinced you God exists?

and when I replied with "Personal experience, specifically of a miracle." responded:
Cool. Thanks for the response. Take care. :)

Given that I am quite used to my views (on any number of topics) being ridiculed or attacked I was dead chuffed that this was so positive. In the 21st century miracles are rather frowned upon but to me that's what happened. Someone else may rationalise it any way they want but it won't shake my belief that some higher power - which I shall call God - was at work.

My Miracle

On January 12th 1996 my daughter Erin was born. Many people consider 'the miracle of birth' to be a profound moment in their lives but my experience was a tad more literal perhaps.

A little background: I was a 17 year old single mother. I was not a happy bunny. I had never wanted children but following an unplanned pregnancy and trauma around a period of homeless and subsequent abortion...well, stuff happened. I was in no way, shape or form ready to be a parent. I was broke and living in a shelter. Life was hell enough. Add to this a pregnancy with repeated infections, hyperemesis gravidarum throughout (extreme morning sickness) and any ache, pain or niggle known to womankind I had really had enough. I had planned my suicide for after the birth due to depression over my abortion, my ex leaving me and my general situation.

Erin was born at 40 weeks +11. I had been induced as I was overdue and my labour had been horribly mismanaged...it lasted, by my reckoning, 27 hours. I was so out of it from exhaustion anaemia and blood loss that I wasn't aware of much at the time but later my mum (who was with me throughout) told me the truth of Erin's delivery. What she told me changed my life.

Erin's heart rate, monitored throughout, kept dropping off with every contraction but the midwife brushed it off...she should have been delivered by emergency Caesarian. The delivery took way longer than it ought to anyway - but they never tried ventouse or forceps either - I was just left to struggle to deliver a 9lb 11oz baby naturally. As it turned out the cord was twice around her neck and once around her body - she had been strangled and oxygen starved with every contraction for HOURS.

My mother described the delivery. Erin was blue and jelly like. She lay on the bed - no movement, no cry, nothing. The midwife DID NOTHING. My mother thought Erin was dead and threw herself on top of me so I wouldn't see.

My mother doesn't do emotion much. I thought it was weird her suddenly hugging me but I thought maybe she was acting the part for the midwife's benefit. In all honesty - if Erin had been dead, at that moment I was far too shattered to give a fuck about absolutely anything. Soz Erni!

Anyhoo, the way my mother told the story is that Erin started going pink. She'd just been left there, the midwife had done absolutely nothing to help or resuscitate her - didn't even check for a pulse. Then, as my mother was on top of me she'd called to my mum to hit the alarm button. People came running and there was a good bit of fuss...eventually I held Erin and there were photos and the usual stuff. But she was not given any particular treatment. They *might* have puffed some oxygen at her but absolutely nothing else.

My mother told me all this later due to concern about brain damage. Erin's father's sister had a baby boy who'd stopped breathing just after he was born - he was subsequently diagnosed with cerebral palsy. So there I am - 17, broke, in a shelter, new baby, stressed, traumatised, broken hearted from my partner's desertion...and now I find out that my baby damn near died at delivery - which to me was the defining moment of realisation that there was a God - and might well be brain damaged.

I'm not entirely sure WHY Erin's survival meant there had to be a God...it just DID, if you see what I mean. She was somehow meant to be here. I felt like I had been given a second chance to be a mother; particularly after my earlier abortion and a subsequent early miscarriage. I forgot about my planned suicide and stepped up to being a parent.

Over the years I watched Erin like a hawk and worried endlessly about her development. Was she deaf? Autistic? She was misdiagnosed as dyslexic at one point... She left school with 11 GCSEs (9 A*-C), passed her A-levels and this September started university. If anything could strengthen my belief that a miracle happened at her birth it would be that. For all that oxygen starvation the only possible indication of damage is that she is colour-blind...however, as her younger sister (full-blood, I was reunited with their father for a time) is also colour-blind and suffered no birth trauma it seems Erin was actually completely unscathed. If that's not a miracle I don't know what is! You might say it's chance or luck or that it wasn't that severe...but simply I can never believe it.

How I define God and what my faith is are topics for another time or never.