by an anonymous NICU nurse
There is a medical controversy brewing over in England that is threatening to invade the United States. Ms. Capewell, a 23-year old British mother, is claiming English doctors let her 21 5/7 week infant die, only because they were following national perinatal guidelines.
If only he was born at 22 weeks, she insists, they would have tried everything to save him and admitted him to the neonatal intensive care unit (NICU). According to British perinatal guidelines, the age of viability of infants is set at 23 weeks gestation. Ms. Capewell states the guidelines had robbed her son of a chance of life. Following her experience, she has set up a web page called Justice for Jayden, urging a change in the British legislation. She is petitioning that all infants born before 22 weeks gestation be afforded the opportunity of full resuscitation measures.
My heart goes out to this mom who lost her infant and suffered multiple miscarriages. I can’t imagine the pain she must have felt when she lost her child. As a NICU nurse, however, I must disagree with her on her assumptions of care for an infant born with such extreme prematurity. The doctors were just in their actions. It would have been an extreme injustice to Jayden to attempt to resuscitate one so premature.
Infants born at 22 to 23 weeks gestation have a 1 to 10 percent chance of survival, with the high end requiring the most advanced NICU care possible. Of those survivors, greater than 95 percent will suffer profound neurodevelopmental impairment. By this, I do not mean the child will have a learning disability, or need to walk with canes, or have mild cerebral palsy. I mean the child may suffer from intractable seizures, need a feeding tube because of an inability to swallow, have varying degrees of blindness and deafness, have spastic quadraplegia and be wheelchair bound, never speak, never crawl, never walk, or never run.
I have cared for many infants at the edge of viability. It is always emotionally draining. There is no justice to it. The intensive measures involved to keep a 22 to 23 week-old infant alive is staggering, and it is ugly. I once cared for an extremely premature infant who had an IV placed on the side of her knee due to such poor IV access. When that IV infiltrated, I gently pulled the catheter out, and her entire skin and musculature surrounding the knee came with it, leaving the patella bone exposed. I have seen micro-preemies lose their entire ear due to scalp vein IV’s. I have watched 500 gram infants suffer from pulmonary hemorrhages, literally drowning in their own blood. I have seen their tiny bellies become severely distended and turn black before my very eyes, as their intestines necrose and die off. I have seen their fontanelles bulge and their vital signs plummet as the ventricles surrounding their brains fill with blood. I have seen external ventricle drains placed in their brains, and watched as the collection containers filled with blood that looked like crude oil. I have seen these tiny infants become overwhelmingly septic as we pump them full of high powered antibiotics that threatened to shut down their kidneys, while fighting the infection. I have seen many more extremely premature infants die painful deaths in the NICU, then live.
Trying to save babies as young as Ms. Capewell’s is an experiment in futility. An experiment on an actual human life. Many, including pundits in the United States, are trying to twist this story as a fight against health care reform and that not attempting to save a 21-weeker is rationing care.
Comparing not saving a 21 week fetus to rationing health care is a ludicrous argument. It has nothing to do with trying to save money. It has everything to do with humanity, and morality, and justice.
Letting Jayden die was a Justice for Jayden.
This anonymous nurse blogs at Reality Rounds.
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{ 13 comments }
One notes that telling the truth here requires anonymity. I agree with the nurse’s staying anonymous. Every word uttered will be used against her in future litigation.
About 20% of care in the US is futile care. That is twice the cost of defensive medicine. It is driven by the fear of scapegoating families and their lawyers. I would like to see a patient direct action group go after these bullies. They would redress the balance of power and end the intimidation of health professionals.
Grr! This story is doing the rounds on the ‘net and it’s pissing me off. People are using it to run around like Henny Penny screaming about ‘the gub’mint is gonna kill grannies and babies!!’ when that’s just not the case.
I’m English. I lived there for half my life; I am a product of the NHS, lol. The Daily Mail is a tabloid and not everything you read in it can be trusted….and I think that in this case, viability was based on a whole lot more than just weeks and days gestation (as it should be).
Contrary to popular belief, the government has very little to do with the actual medical decisions that are made within the NHS. There aren’t flowcharts or guidelines handed out to doctors; they’re left to make their own decisions about what’s best for their patients. There’s still autonomy, they’re not government bots. There is no ’sorry granny, you’re 80. We’re not wasting chemotherapy on you, we’ll give it to someone younger’.
Thank you for being a voice of rationality in what is rapidly degenerating into mass hysteria.
The author in all her empathy is completely missing the point here. He/She is making an argument whether it is worth trying to save a babies life against poor odds of success without seeing or examining the baby, might not even be in the same country as the baby, may have a completely different cultural/ethnic/religious/education background. Dispite all these differences and ignorance of the specifics of this individual baby this nurse knows whats best and how to value life and better than those whom that life actually affects directly. This is blatant arrogance and is the same arrogance of a systematic rule that arbitrarily says that at 22+ weeks the risk is too high, but at 23 it is acceptable. this distinction was drawn arbitrarily and not scientifically This is question of values that should be assessed at an individual level, judging the circumstances of the unique individual situation by those directly involved with the care of the baby, not by a systematic decree.
I did blog-battle over this case a couple of weeks ago with a dear online friend of mine who lives in another state many hundreds of mile away (I’m not linking the post in deference to him). He did a post on this case and invited my thoughts (I think, expecting support). The kicker in this tale is that his grandson was resuscitated at 22 weeks, and he had strong feelings that the baby in England should have been given a chance.
His grandson also died – after a week or so of the full-court press. At the time, I lent moral support and medical opinion by phone (mostly preparing him for the inevitable) – there was nothing else to do.
But I told my dear friend that given what I knew about the case, I would not have resuscitated the infant – in fact, it would have been managed by the OB staff as a miscarriage and I would not have been called in. I made all of the arguments . . . about what research has born out in terms of outcomes for uber-premies (i.e. 23 weeks and below) . . . about what standard practice generally is these days in the hospitals where I practice (I say “standard” because one can always make exceptions based on professional judgement) . . . that there are many variables that factor into the decision to resuscitate . . .. about how “care” and abject torture can be a fine line . . . and that in today’s legal environment, doctors MUST have institutional guidelines & protocols that they can fall back on when they make a judgement call (medical protocols being born of statistics & studies).
But this normally fiscal conservative’s argument was filled with emotion. The baby deserved a chance – the Mother/family needed to have time to come to terms (apparently no matter what the prognosis or cost).
I countered with tales from my training and early career – a time when limits were pushed – before the studies were done and protocols established. As the nurse in this post relates, I saw some horrible things – for in Neonatology, there is a point at which intervention becomes nothing more than an ego-feeding, cruel experiment that inflicts unimaginable pain.
From the thread:
” . . . I daresay most hospitals in this country now have guidelines for intervention (as a legal protection) – and we don’t need government intervention to carve anything in stone. Keeping the government out of the equation provides leeway for individual decisions based on shades of grey. But having some kind of protocol also gives doctors something upon which to hang a hat.”
My friend would not be moved. He countered with scripture.
I kept trying:
“Think about what you are saying. This young/grieving Mother wants the state to make it MANDATORY for doctors to resuscitate babies they don’t think are viable (not defined in Websters – but hey, we went to school for a decade or longer in order to be able to make those calls). Does “First do no harm” ring a bell?
There are simply limits to what we can do. It is human hubris to think otherwise.”
I also made this point:
“I am just as opposed to Obamacare as you are. But the arguments have to be reasonable. The world of uber-extreme premies – where NOTHING is black and white – is not the place to set up camp with your arguments.”
I asked my friend to think about this as well:
“I would also point out that (although I in no way support it), babies over 22 weeks can be/are aborted in the USA and it’s totally legal.”
No irony there huh? Some babies can be tethered to IV’s and ventilators and given every chance & intervention-akin-to-torture no matter what the cost. And some babies are thrown in the trash.
The blog battle died out. And my dear friend is still my dear friend.
Anon #3 is exactly right.
A decision was made. A treatment was denied. A life ended.
Maybe the decision was 100% logical, cost effective, and even humane. But it was still a decision. A decision made by someone who was neither the patient nor the patient’s loved ones.
To suggest otherwise is sheer insolence. To cloak it in blather about “compassion” is intellectual cowardice.
So what if “a decision was made”? There are things that physicians cannot, in good conscience, do, even at the request of their patients. A physician can’t just write a script for Oxycodone because a patient wants it. A physician shouldn’t (potentially) torture a miscarried child (like this one) and waste resources for no foreseeable gain just to placate the parents. I understand the parents were distraught, but biology and our current level of technology make it so that this child couldn’t be saved. I have no problem with trying to save preemies that have a chance. This preemie, however, never had a chance.
“KipEsquire”: I assume that you are an attorney. Just as there are things attorneys won’t do for clients (violate ethical principles or the law), there are things that physicians won’t/shouldn’t do at the request or their patients or the guardians of those patients.
KipEsquire, insolence is my specialty. And I respectfully beg to differ with you.
In all good conscience, there was no “treatment” to be offered to this baby.
The doctor in this case decided that the guidelines in place were medically appropriate and declined to intervene. And that decision was all of the things you list . . . logical, cost-effective, humane and compassionate.
One more thing. Speaking as someone who once was fired for defying threats in order to save a critically-ill newborn’s (not a premie) life, you really need to sling the “cowardice” tag elsewhere.
I’m not your girl.
Premies before 24 weeks are treated as non viable just about every where I this country. Not offering resucitation is the accepted scientific standard.
An important caveat: 24 weeks AND/OR 500 grams (assuming dates are accurate). A physician can always exercise his or her own discretion, based on what the baby looks like and what it does at birth.
Indeed HH, many tertiarty OB centers will not accept a referral for laboring/ruptured Moms less than 24 weeks gestation (the referral being made on the premise that an uber-premie has a better chance for survival delivering in a hospital with a NICU). The outlying/referral hospital holds on to the Mom and copes with whatever happens until 24 weeks.
Pins and needles.
The decision should be made by those who are responsible for payment. Unless the parents want to pay for medical treatment for their premature infant, then the insurance company should have the final say. Perhaps it should be written into policies whether premature infant care is provided and appropriate rate increases should occur for those who want that benefit.
“……The decision should be made by those who are responsible for payment. Unless the parents want to pay for medical treatment for their premature infant, then the insurance company should have the final say…….”
Well, agreed. But then, don’t take away my money in taxes for a healthcare system I don’t want, let me make decisions for my own healthcare.
That baby, born before a certain gestational age, is called an abortus in the UK and on the Continent. In the USA, it’s a live birth. And yes, it most likely will die……though I’ve also seen babies that size that lived and did well.
But here’s it’s called a live birth, and when it dies, it’s counted as an infant mortality. Across the pond, it’s called a stillbirth. Bear that in mind when comparing infant mortality statistics.
I am a UK obstetrician. Can I just point out to the previous poster that this would not be counted as a stillbirth in the UK. Deliveries of fetuses who show no signs of life before 24 weeks gestation are miscarriages, those after 24 weeks stillbirths. If an infant shows any signs of life (as occurred in the case under discussion) after birth then it is counted as a live birth with subsequent death and the appropriate certificates are issued, whatever the gestation.
Thanks for posting this! As a parent of a 25.5 week preemie, I have a strong passion for discussing the long term impacts of prematurity-that is rarely discussed in mainstream media.
Thanks to RR for putting the reality into words!
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