retinopathy of prematurity.org :
Preemies and their parents get short shrift
in many intensive care nurseries
On a lighter note and a smaller scale, Chris Clark, a mother in Gushing, Wisconsin, singlehandedly introduced a revolutionary new form of premature care into her local NICU. Unlike many mothers who give birth prematurely, Mrs. Clark had time to gather information about prematurity during her weeks of bedrest following the premature rupturing of her membranes.
She was particularly intrigued by an article from a popular parenting magazine on Kangaroo care, a form of skin- to- skin contact between premature babies and their parents in which parents act as the babys incubator.18
Mrs. Clark immediately contacted the author of the article for further information and, when labour began in earnest, Mrs. Clark arrived at the hospital armed with a sheaf of studies. At first, the staff response was : "No way!"
But Mrs. Clark, who is a medical professional herself, persisted. "It made me sick", she said, "to think about putting my child in a plastic box with little human touch except for things that give pain." Finally, she found a neonatologist and nurse willing to give Kangaroo care a try.
When other parents saw what Mrs. Clark was doing, they wanted to give it a try.19 Although she encountered further staff resistance when a new team of caregivers rotated onto the case, Mrs. Clark persisted and prevailed.
That was in 1989. Today at St. Pauls Childrens Hospital, 95% of the parents arc engaging in Kangaroo care, and this fact is proudly and prominently featured in all of the hospital's advertising.20
Currently, parents in the U.S. are trying to draw attention to environmental dangers in the nursery, particularly the potential hazards of nursery lighting.7, 8, 9, 10, 21, 22
One of the leaders in this effort is Peter Aleff of Vineland, New Jersey. Mr. Aleff, who is the father of a child blinded by retinopathy of prematurity, has been waging a ten year long campaign to alert the public and the medical profession to dangers posed toa baby's eyes by blue light with wave lengths below 500 nanometres — a type of light which is intensely emitted by fluorescent lighting found in the nursery.22
Mr. Aleff became familiar with the hazards of short- wavelength light through his work in industrial safety and through a comprehensive review of the literature on the effects of such light on laboratory animals and adult humans.
Mr. Aleff makes the following statement;
"The lighting level currently recommended for intensive care nurseries can expose babies in fifteen minutes or less to the amount of retinal irradiance that the U.S. Occupational Safety guidelines recognize as the danger limit for retinal damage in adult workers.22, 23
Mr. Aleff also points out that the epidemic of retinopathy that began in the 1940s rose and spread through the world in tandem with the installation of fluorescent lighting in premature nurseries.22
I must admit to being an agnostic on Mr. Aleffs theory about the relationship of light to retinopathy. I simply dont have the technical background that would allow me to make an independent evaluation of his calculations or his sources. What I do know is that no physician to date has been able to offer a convincing refutation of his data or his hypothesis.22
Meanwhile, his theory is being taken seriously by parents and by a growing number of professionals.21 A national organization, Prevent Blindness in Premature Babies, has recently formed around the issues Mr. Aleff has raised.21, 24
The organization was founded in Wisconsin (P.O. Box 44792, Madison, Wisconsin $3744-4792), under the leadership of Margaret Watson, who is also a parent of a child blinded by retinopathy. The organization is callingfor public hearings an nursery lighting and for the establishment of a national registry of retinopathy victims to determine the extent of the disorder, the incidence of later vision loss (from regressed retinopathy), and the long- term outcomes of children who have undergone cryosurgery.21, 24, 25
Most of the NICU environmental changes advocated by this organization have already been suggested by researchers in the field of optical radiation and visual health.25, 26, 27 They include:
The parents who advocate these changes recognize that the role of light in retinopathy remains a medical controversy that needs to be settled by well- designed research.
However, they point out that if Mr. Aleff and the Occupational Safety guidelines are correct, none of the past research and none of the proposed research adequately addresses the issue, since in none of these trials are babies shielded from light until up to 24 hours after birth. By this time the damage is already done.24
Parents are also concerned about issues of informed consent in research on nursery lighting. For example, in a recent grant application for one such trial,'" the authors state that, "...there are compelling reasons to believe that light may play a role in exacerbating ROP." They go on to list a number of studies and observations that support the role of light as a factor in the development of retinopathy. The authors further state that "no plausible basis exists for expecting harm from exposing babies to light."
The parents' organization wanted to know if the families of babies in this trial were to be given this information. If not, how could these families give their truly informed consent?
(One might ask the same question of parents outside the experiment whose babies are admitted to NICUs.)
The parents were particularly upset over the informed consent issue in this study since they felt the trial was unlikely to produce meaningful results. As in most of the other studies before it, babies were not to be protected from light until at least 24 hours after delivery, a time in which there is reason to believe the eye may be particularly vulnerable to damage.22, 29
When parents asked to see the consent form for this proposed trial their request was denied.22 The study was ultimately denied funding [Note: This decision was later reversed and resulted in the LIGHT-ROP study.]
I dont know what effect, if any, criticism from parents had on that, but I do think it is a good idea if activists like Peter Aleff and Margaret Watson help with the research design in future trials. This would also insure the support of parents.
In the meantime, parents would at least like to see their babies given the same protection from short- wave industrial light that adult industrial workers are given. In one parent support group newsletter the question was asked: "How many neonatolopists does it take to change a light bulb?"30
Some physicians respond to questions like this by claiming that it is too expensive to change from fluorescent to incandescent lighting.31 But expensive lighting changes may not be necessary. Before coming to this meeting, I had a chance to speak with Mr. Aleff, who says that there is now an inexpensive filter available commercially that can be placed over fluorescent tubing to remove wavelengths below 500 nanometres.
For more information on this product, please contact Mr. William Brown, Chief Executive Officer, A.L.P. Lighting and Ceiling Products, Inc., 6333 Gross Point Road, Niles, Illinois 60648.
Margaret Watson's organization was the first parent activist group to concern itself with NICU care. The organization Parent Care, which I referred to earlier, is an umbrella organization for local parent support groups. It has not, in the past, engaged in advocacy (except for the establishment of more parent support groups), and although it has provided a lively forum for controversial views it has generally not taken a position on any of them.
As a result, many parents feel the need for a group that will take a position on controversial issues and advocate change. Over the years, I have found myself coordinating such a network of parents and professionals who are concerned with a number of issues in neonatology — from ethical decision making to the nursery environment.
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