Skeleton in the cupboard?

All mothers of preemies have a pet peeve or two.  For some, it’s the old lady at the doctor’s office who reaches into your son’s covered car seat to stroke his cheek, ignoring your sign: 

When is it ever okay to touch a stranger’s baby without asking?  Keep your hands off my immunocompromised baby; he has spent enough days in the hospital already!

For others, it’s the well-meaning relative who tells you to get plenty of sleep while your daughter is in the NICU because she’ll keep you up all night after you bring her home.  Great advice except for the fact that I have to pump breast milk every three hours round the clock.  Not to mention the constant worry that keeps me awake between pumping sessions.

And for others, it’s the sister-in-law who, starting at 32 weeks, is constantly complaining about her pregnancy aches and pains, wishing that her baby would come early.  What I wouldn’t give for a 40-week pregnancy.

These things don’t bother me too much.  The elderly lady is probably not sick; the well-meaning relatives are doing their best to be supportive, and the sister-in-law would change her tune if her baby had to spend a single day in the NICU.  There is one thing that makes me absolutely livid, though.  It’s when people write or think or say,

Maybe we should be like other countries and not try to “save” every premature baby. Then the US infant mortality statistics would be better in comparison and our health care costs would be lower.

Today some babies are being kept alive that really should not be because of advances in medicine.  What would have died naturally 50 years ago is now deemed viable and saved.  Sometimes we should take a lesson from nature and let things run their course without tons and tons of intervention, expense, and lifelong difficulties.

Neonatology, on balance, does more to produce disease than to cure it.

Sometimes it’s people who neither have nor want children who hold these beliefs, people who can only see the economic side of the prematurity issue.

Sometimes it’s parents who have experienced both healthy, full-term birth and miscarriage.  They have come to accept their losses as “nature’s way of dealing with unhealthy children” and try to extrapolate their experience to that of parents of extremely preterm children.

And sometimes, I must admit, it’s bitter parents of children who are multiply disabled due to preterm birth wishing that their neonatologists had been less ambitious.

Luckily, relatively few parents are ever put in a situation where they have to decide whether comfort care is the best option for their baby.  I’m certain that it’s one of the most difficult decisions a parent could ever be asked to make.  So many factors have to be weighed: the risks of necessary medical interventions and their effectiveness; the baby’s chance of survival with and without moderate to severe disabilities; the family’s ability to care for a disabled child; personal values and beliefs; the parents’ ability to conceive another child; and so on.

I doubt that people who say that too much is being done to “save” premature babies have really thought through what they’re saying.  Do they mean that 23- and 24-weekers should not be intubated after birth, even if their parents want them to have a chance to live?  (Generally speaking, parents of babies born at 23 or 24 weeks must decide whether or not they want their child to receive intensive care.)

Do they mean that parents of 25-, 26-, and maybe even 27-weekers should be asked whether they want their child to receive comfort care after birth rather than standard medical interventions?  (Despite the fact that the majority of babies born at these gestations now survive without moderate to severe neurodevelopmental impairment.)

Do they mean that babies who survived birth but suffered severe brain bleeds should not receive anything more than comfort care because their risk of long-term disabilities is too high?  (Brain bleeds are the best predictor of negative neurodevelopmental outcome, but even they don’t guarantee anything.  Babies’ brains have an amazing ability to compensate for early trauma as they grow and develop.)

Do they mean that babies who suffer from severe respiratory distress while in the NICU should not be be mechanically ventilated?  (For many, mechanical ventilation is what pops into mind when they think of extreme life-saving measures, and chronic lung disease, which is common among infants who received prolonged mechanical ventilation, is associated with negative neurodevelopmental outcomes.  However, many babies have spent time on ventilators and not developed chronic lung disease.  Near-term preemies and micropreemies alike have benefited greatly from relatively short periods of time on a ventilator.)

Do they mean that there should be a weight cutoff?  As in, no baby born weighing under a pound should be “saved”?  (Gestational age is a far better predictor of outcome than birth weight.)

Do they mean that babies born not breathing should not be resuscitated?  (If that were standard policy, Peter would not be here today.  Luckily, doctors know that Apgar scores are poor predictors of both short- and long-term outcome.  Peter only needed a short period of mechanical ventilation.)

I have difficulty imagining a humane and logical way to “save” fewer preterm babies who are likely to have long-term disabilities.  Doctors should not deny a parent’s right to ask for intensive care on behalf of their child on the grounds that the child doesn’t meet a certain cutoff for gestational age or birth weight or severity of intraventicular hemorrhage.  Doctors do need to provide parents with the most accurate outcome statistics available, given their child’s situation, and allow them to decide whether to initiate or continue intensive care.  (Outcome statistics for babies born at 22 to 25 weeks’ gestational age can be found here.)

As for me, I am certain that the $538,193.95 our insurance paid for Peter’s NICU stay was money well spent.  Money spent in a NICU has a far better return on investment than money spent in a geriatrics unit.

But after I’m done being angry at people who make Nazi-like suggestions that too many premature babies are being allowed to live, I have to acknowledge a regrettable but true point that they make: though mortality rates have improved dramatically in recent years, a relatively high percentage of extremely low birth weight infants (ELBW = born weighing under 1000 grams) still have poor long-term neurodevelopmental outcomes.

Neonatology is a relatively new and rapidly evolving field.  The 1980s were marked by enhanced assisted ventilation for neonates.  Exogenous lung surfactant and antenatal and postnatal corticosteroid therapies were introduced during the 1990s.  During the 2000s, sepsis prevention initiatives were introduced, antenatal corticosteroids became routine, and the use of postnatal corticosteroids was minimized.

This article compared survival of extremely preterm infants of 23-26 weeks’ gestational age born between 1986 and 1990; between 1991 and 1995; and between 1996 and 2000.  On one end of the spectrum, survival of 23-weekers increased from 40% during 1986-1990 to 66% during 1996-2000.  And on the other end of the spectrum, survival of 26-weekers increased from 78% during 1986-1990 to 93% during 1996-2000.

Though rates of survival increased during these time periods, rates of survival with neurodevelopmental impairment increased or, at best, remained stable.  This study found that ELBW infants born between 1982 and 1989 weighing 500 to 999 grams had a 51% mortality rate, 12% chance of survival with impairment, and 32% chance of survival without impairment.  ELBW infants born between 1990 and 1999 had a 32% mortality rate, 21% rate of survival with impairment, and a 41% chance of survival without impairment.  (Neurodevelopmental outcome was assessed at 18 to 20 months.  Impairment was defined as having moderate to severe cerebral palsy, hypertonia, or hypotonia; shunt-dependent hydrocephalus; blindness or deafness requiring a hearing aid; and/or a mental development index (MDI) score of <70 on the revised Bayley Scales of Infant Development (BSID II).  Follow-up assessment was not completed for 5% of patients.)

Hence the ethical debate: do the additional survivors, many of whom develop permanent neurological disabilities, merit the economic and emotional costs of intensive care for extremely premature infants?  It’s not an easy question to answer, but I believe neonatologists are doing a service to society when they provide intensive care to ELBW infants whose parents have asked for this care.  Because as they treat critically premature infants and follow-up with assessments of neurodevelopmental outcomes, they are learning which factors are associated with long-term neurodevelopmental impairment, which treatments work, and which treatments cause more problems than they solve.

In particular, postnatal use of the steroid, dexamethasone – once used to prevent and treat chronic lung disease – is no longer recommended, as it is associated with impaired growth and neurodevelopmental delays.

Factors associated with positive neurodevelopmental outcome include use of antenatal maternal steroids, cesarean delivery, a normal cranial ultrasound, and lack of chronic lung disease.  Basically, to minimize neurodevelopmental impairment, doctors and researchers need to find ways to minimize brain trauma (intraventricular hemorrhage and periventricular leukomalacia) and lung inflammation and scarring.  Easier said than done when you’re treating a tiny newborn that should have spent the next 3 or 4 months in utero.

Nonetheless, rates of neurodevelopmental impairment have improved somewhat in the past few years.  This aforementioned study found that ELBW infants born between 2000 and 2002 had a 29% mortality rate (similar to the 1990s), 15% chance of survival with impairment (decreased from 21%), and 50% chance of survival without impairment (improved from 41% in the previous decade).  The authors attribute these improved outcome statistics to

  1. Increased use of antenatal steroids, which minimize respiratory distress immediately after birth and chronic lung diseaese in the months that follow.
  2. Minimal use of postnatal steroids, which increase the infant’s risk of cerebral palsy.
  3. New aseptic policies to minimize the risk of nosocomial sepsis.  Sepsis has been associated with the development of periventricular leukomalacia.

Bottom line: doctors can always learn from their experiences, and tiny babies are still in need of new therapies and treatments to help minimize their risk of morbidity and neurodevelopmental impairment.  The March of Dimes deserves your support because it funds researchers such as:

  • Richard Lambert Auten, MD, Duke University Medical Center in Durham, North Carolina, who is seeking to devise better ways to deliver nitric oxide (NO) to the lungs of premature infants who are at high risk of bronchopulmonary dysplasia (BPD). This chronic lung disease is common in premature babies who have been treated for breathing difficulties. Inhaled NO treatment helps prevent inflammation, which contributes to BPD, but has not yet proven successful in preventing BPD.
  • Erika Chiong Claud, MD, University of Chicago, who is investigating whether use of certain antibiotics in premature infants may alter gut bacteria and increase susceptibility to necrotizing enterocolitis (NEC), a life-threatening intestinal complication that is most common in babies born very prematurely. This study could possibly lead to changes in the care of premature babies to help prevent NEC.
  • Kip Connor, PhD, Children’s Hospital, Boston, who is studying the role of omega-3 fatty acids (nutrients found in certain fatty fish) in preventing abnormal growth of blood vessels in the eye that can lead to retinopathy of prematurity (ROP). ROP is a common complication of very premature birth and can lead to blindness. This study could possibly lead to nutritional treatments that could help prevent ROP.
  • Anne M. Moon, MD, PhD, University of Utah in Salt Lake City, who is studying how a protein regulates the development of the alveoli, the tiny air sacs in the lungs where gas exchange occurs. Babies born prematurely may have fewer and less mature alveoli than babies born at term, often contributing to a breathing problem called respiratory distress syndrome (RDS). This study could improve treatment for premature babies with RDS and for babies with lung underdevelopment due to other causes.

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