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What is "Normal" for Preemie Outcomes?

By Helen Harrison

It has been my experience that many neonatologists use the term "OK" to mean "survival," and they use it that way to parents who may have their own perceptions of what it means.  The "90% OK " statistic is actually correct if what is meant by it is survival through early childhood.  "Normal" is another word that can be used in many different ways.  To some MDs and follow-up people, it means IQ over 72 and ambulatory (not retarded, doesn't have severe CP). 

However, many preemies have IQs that are somewhat above 72 but still considerably lower than that of their fullterm peers.  A recent large follow-up study of VLBW children showed 50% have IQs 1 or 2 standard deviations below that of their fullterm peers -- this equates to IQs of below 85.  An additional percentage have complex learning disabilities, despite IQ >85.  (Wolke and Meyer. Cognitive status, language attainment, and pre-reading skills of 6-year-old very preterm children and their peers. Developmental Medicine and Child Neurology 1999; 41:94-109). Although many of these children might fit the MDs' definition of normal, this is *not* normal to the parents (unless <85 is also their own IQ range). 

As for ambulatory, many children who would have been diagnosed as having CP in the past are no longer receiving that diagnosis.  Instead, people talk about "clumsy child" syndrome or "developmental coordination disorder."  However, these brain-based motor problems can significantly interfere with the child's ability to lead a normal life.  Not calling this CP may make some parents happier and may make follow-up statistics look better, but it doesn't make life any easier for the affected children. 

What most parents mean by "normal" or "fine" is, I think, "indistinguishable from fullterm peers" or "what the child would have been like if not born prematurely -- in other words, true catch-up."  That is what I would mean by it. By these definitions, only about 1/3 of VLBW children are normal -- and some might argue that even this figure is too high. As for decisions that might be made differently, some parents might choose not to have a child with a very poor outlook for a normal life resuscitated and subjected to the pain of NICU care and its aftermath.  This is, by the way, the parents legal right in some instances.  Other decisions that might be made differently are societal, and may include a commitment to better follow-up of preemies and greater awareness of, and preparation for, the new population of extremely premature infants who are entering, or headed for, our school systems.  A cursory reading of the posts to the preemie-child list shows that educators haven't a clue as to what is going on with these children or what to do about them.  Preemies' learning problems are complex and do not necessarily fit the traditional patterns that have been described in fullterm children.

There are also many short-term and long-term health problems associated with prematurity that very few parents or physicians seem to know about.  On preemie-child we are having a discussion of kidney and gall stones (side effects of calcium supplementation, TPN, lasix use, etc.) that may persist well into mid-childhood or beyond, and that is just the start.  The latest issue of Newsweek describes new evidence that people born at low birth weight are more vulnerable at a much earlier age to cardiovascular problems, diabetes, reproductive problems, and more.  Some childhood follow-up studies are now showing that preemies are likely to become hypertensive at very early ages and may need special monitoring for this condition.  Virtually every body system from teeth and bones, to the liver and kidneys, to the digestive tract, to the brain is affected -- often permanently -- by prematurity.  The realities of premature outcome, many of which are only now becoming known, would, I think, lead most parents to reject the "90% OK" characterization.

Helen Harrison is the well known author of The Premature Baby Book, often referred to as the "Bible of Prematurity" by older preemie parents. These observations are excerted with permission from posts to the prematurity parents support internet mailing lists on prematurity: Preemie-child and Preemie-L.

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