Monday 24 December 2012

The agony and the ecstasy

It seems appropriate at Yuletide that my last post of 2012 is a birth story. There is something I need to put to rest, some vivid images sometimes seem to be stuck on a perpetual loop in my brain. And for the sake of my long suffering friends I need to ditch the angst and the envy and the sheer and unadulterated resentment I can irrationally and unkindly (still!) feel toward the parents of full term singletons with easy births and babies that feed every four hours, sleep well and aren't violently sick for a year. Here are some memories albeit probably incorrect, incoherent and incomplete.

33 weeks and 3 cm dilated – they are on their way. The Flood – quick, someone bring a mop! I am the last one in before the maternity unit is closed. A junior doctor pleads with me to write to my MP to complain of staff shortages. Puking – why oh why did I have fish and chips for tea? Contractions through the night. Arctic conditions – dressing gown quick, it's freezing. Uncontrollable full body shivers. Saharan Summer – too hot, fan, fan! Midwife, is this normal? “Oxytocin my dear”. Finally the sunrise brings news of Barak Obama winning a Nobel Peace Prize. Hey this Entonox is great, am I hallucinating?

A gorgeous Spanish midwife (to be later rewarded with a bottle of Cava and my eternal gratitude) takes over. Eventually an examination shows me 8cm dilated, but with meconium to keep us on our toes – the babies are not as happy as they could be. Action stations, not long before we rock and roll. She preps me with the aid of a kind anaesthetist who reminds me of an old school friend. I am trundled into theatre – an appropriate moniker as the birth is to be aided by a team of 12* (good job I am an exhibitionist by nature).

Legs in stirrups, pushing is hard with an epidural. Am I actually doing anything useful? But laughing and joking we all get on with the job in hand. Suddenly the atmosphere changes. Tense. Brachycardia. Controlled panic? Prolapsed umbilical cord (was I even aware of this at the time?). Ventouse. Fail. PLEASE. DON'T. LET. THEM. DIE. Forceps. Confusion: one consultant says “push” as the other screams “don't push”. Unbeknownst to be me the anaesthetists have been prepping me for a general anaesthetic and an emergency C section. But then out she comes and is spirited off to SCBU. And then we have to do it all again...

With all that newly found intrauterine space he has the freedom to swim. More panic as his heart rate is lost but the midwife, having monitored them for hours, knows where he is. I block out the noise and listen solely to her guidance and the calm and encouraging words from my husband. 13 minutes later out he comes to a chorus of applause. Euphoria. Relief. Gratitude. A long awaited cuddle.

A few hours later I am wheeled to the Neonatal Intensive Care Unit. The intensity of emotion emitted from its walls is tangible. Unimaginably tiny babies (some born as early as 24 weeks) lie in the Hot Room. A blue haze from those undergoing photo-therapy for jaundice. The perpetual noise of machines beeping. Mums and Dads with babies stuffed down their jumpers (kangaroo care). The nurses seem superhuman: angels sent to calm, support and care for the sickest of babies and their exhausted, fragile parents.

Our children are in their little presentation boxes adorned with wires, cannulas and naso-gastric tubes. Cpap covers C's face to aid her breathing. It takes us three days to name her – how can you name a child when you have never properly seen their face? And so begins a two week roller-coaster of anguish, joy, fear, confusion and the kindness of strangers.

The Instrument of Extreme Torture AKA the double breast pump. My promise to turn vegan (as soon as I stop being anaemic) in solidarity with those poor dairy cattle. My milk coming in. And not coming out. Engorged takes on a whole new painful meaning. Excruciating mastitis. Will Reading be found by the archaeologists of the next Millennium having been buried in an explosion of colostrum? Milk fever – waking up in the night drenched and holding nonsenical, febrile conversations with confused midwives. An infection that confers a John Wayne walk. The Fear: the post episiotomy poo. The compassion of the midwife who took the time to run me a lavender bath.

Cannulas frequently become blocked. Changing them seems an onerous and super-dexterous task when blood vessels are so small. How can such a minuscule being produce so much blood? One morning a paediatrician states concern that R is not very responsive. He won't wake up. There is talk of infections “hiding” and the need for a lumbar puncture. He is held down, a paediatrician per limb, like a rat being pinned for dissection. How can someone so diminutive scream so loudly? No infection, but blood in the CFS. A later head scan shows there has not been an inter-cranial bleed as suspected. No brain damage then. Did I actually process any of this information at the time?

The preeclampsia that refuses to leave. The cruel irony of a hospital radio that plays Please Release Me. Blood pressure elevated every time I hear the machine trundling down the corridor to measure it. Care assistants stop telling me the reading: “we will come back later when you have had a cup of tea”. At this rate my kids will be home before me. After a week I lose the will and run off to the local gastro pub for a rare steak and a glass of red wine. On return my blood pressure is 100/70. Result!

Their progress in not linear. Ups and downs are normal but difficult to deal with. Sometimes it feels like they are taking turns. It can be hard to parent your children when they are in need of nursing care. Syringing milk into a tube is not the same as an impromptu cuddle. Incubators can act as physical and emotional barriers. It is easy to feel like a spare part. Irrational feelings of failure constantly simmer quietly in the background. Desperation to have them home: to be on our own as a family without the constant scrutiny of medics. To walk by the river with our double buggy and our double babies. But the advantage of one-to-one lessons in how to bathe, feed, wind, resuscitate our children is invaluable. Our time comes. We “room in”, on our wedding anniversary, for a night, alone with our babies. Surprisingly we pass and so begins the long haul of parenting our two cheeky chappies and that, as they say, is another story...

The agony of the alternative outcome: the acknowledgement of other families' realities. Why us? Why were we the lucky ones? A survivor's guilt of sorts.

The ecstasy that, in the end, everything and everyone was OK. I will forever be in awe of the staff at the Royal Berkshire Hospital that kept us safe.

Merry Christmas and a Happy New Year,

Gems xx

For sources of information, advice or support regarding twins, premature babies, special care, still births, neonatal death and bereavement the following organisations are well regarded:

TAMBA: improving the lives of parents with twins, triplets or more http://www.tamba.org.uk/

Bliss: for babies born too soon, too small, too sick http://www.bliss.org.uk/

Sands: supporting anyone affected by the death of a baby and the promoting research to reduce the loss of babies' lives http://www.uk-sands.org/


* the midwife, 2 scrub nurses, 2 paediatricians, 2 obstetricians, 1 senior registrar, 2 anaesthetists, one anaesthetist's assistant and my husband.

Tuesday 18 December 2012

The (pseudo) science of desperation

This is probably a foolish thing to blog about as it is serious and emotive but this ongoing story of the mother who “abducted” her son rather than allow him radiotherapy has caught my attention due to it involving a) twins b) brain cancer: http://www.telegraph.co.uk/health/healthnews/9738778/Sally-Roberts-runaway-mother-in-despair-as-boys-cancer-returns.html

Now I am not going to pretend to imagine what it must be like to have one of your children diagnosed with an aggressive stage 4 cancer. It must tear a family apart. And the choices that a parent in this situation faces on behalf of their child hardly seem like choices at all. Rocks and a hard places spring to mind. But this story, along with another from my local area, have made me want to both weep and scream. It is not my place to comment on this poor family’s plight or to judge their actions – I truly think the parents are doing what they believe to be best. But in articles I have read there have been mention of the use of alternative therapies such as homeopathy and special diets instead of conventional radiotherapy. To me this epitomises why pseudoscience can be a dark and dangerous thing.

While flicking through my local paper a few months ago I came across an article about a fund raising campaign for a 4 year old girl with brain cancer [1]. Her family has so far raised an incredible £200,000 for her alternative cancer treatment at the Burzynski Clinic in Houston, Texas. I now need to add some context: my gorgeous, vivacious Mum was diagnosed last year, at the age of 55, with grade 4 glioblastoma multiforme (in layman's terms a f*cker of a brain cancer with a median life expectancy of 12-18 months and a 5 year survival rate of less than 10% [2]). So have I spent the last year jumping out of planes, scaling mountains and shaking a tin to raise money for her treatment in America? Or did she forgo “brain frying” radiotherapy in favour of crystal healing, a naturopath's diet and a foot massage? No, for the simple reason that the NHS has (so far) thrown all the resources they can at her and she has been doing better than can be expected considering her prognosis.

So it made me question why, with a local hospitable which has been publicly praised for its care of cancer patients and the pioneering, world leading Great Ormond Sreet Hospital just down the road, was this little girl sent to be part of a drug trial in Texas? I googled the Burzynski Clinic and soon my hackles were well and truly raised. It became apparent that I have been very slow to jump on this particular band wagon: the Burzynski Clinic is extremely controversial. I will try not to go into too much detail as there is a wealth of information (see links below) for you to peruse at your leisure. Many of our best contemporary science writers and bloggers (Simon Singh for example) have written about Dr Burzynski's methods and they have convinced me that at best this doctor is desperately trying to help but is sadly misguided.

Dr Burzynszki discovered the peptides he named “antineoplastons” in 1967 [3]. The Burzynski Patient Group refers to their use as “non toxic” and a “break through” treatment[4]...so why hasn't it broken through yet? If it is “non toxic” why are some of the reported side effects (such as seriously elevated sodium) so dangerous? Why are the interactions of antineoplastins with other traditional chemotherapeutic agents (some of which Dr Burzynski also administers to his patients) unknown? If these antineoplastons are so brilliant why has the medical profession not been using them for 43 years? Why has he published so little in peer reviewed journals? Why do both the American Cancer society and Cancer Research UK advise against this treatment[5]? Why have other scientists struggled to replicate his results? Why has he not conducted randomised, controlled clinical trials (considered the gold standard in clinical research)? Why hasn't he got a bloody Nobel Prize?! Could it be because, just maybe, antineoplastons aren’t actually very effective? Houston, you may have a problem.

Oh but I can hear it now....like thunder in the distance are the cries of the conspiracy theorists “it is the sole, brave maverick against the evil Big Pharma and the FDA”. Yes, the marverick who tries to use libel laws to prevent the freedom of speech of bloggers. And yes, there is a lot wrong with conventional medicine (I could probably discuss it with you when I put down my chick lit and finally get round to finishing Ben Goldacre's Bad Pharma). And yes, sometimes doctors do not explain risk and benefits clearly in layman's terms to terrified families. And yes, informed consent is a nice idea in principle but in reality can be difficult to achieve. And yes, cancer treatments (although better than they were) are still bloody scary with seriously shitty side effects.

Now I don't have a problem with patients using complementary methods in addition to their conventional ones. Some reflexology or reiki may be an enjoyable way to relax and feel better. But if they are used instead of, or interact negatively with, conventional treatment surely they must be considered dangerous. As hard as it is when a loved one may not celebrate another birthday it is important to remember that a patient testimonial is not the same as hard clinic data, however heartfelt it may be. Unproven remedies are just that, unproven: that means they may not work and could cause harm (either directly or because other treatments, with known efficacy and levels of risk, are ditched). Sometimes life deals a curve ball and the choices we are forced to make are not black and white between hope or non hope but the grey area between quality of life and longevity.

Science and technology defines us as a species. It is the questions “how”, “why”, “what if...?” that allow us to increase our knowledge and understanding of the universe and in turn manipulate our own environment and destinies. When done well it epitomises the best of humanity: observant, empirical, creative and solution-focussed. It is the sharing of resources and data, openness to new ideas, international collaboration and well designed and well conducted research that allow us to make evidence based decisions for the benefit of both individuals and society. The alternative medicine industry appears to be directly at odds with this, giving false hope to people at their most vulnerable.


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