Should letting a premature infant die be considered health care rationing?

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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