In 1991, I began sending the letters and articles these parents and professionals had sent me to Jerold Lucey, the editor of Pediatrics.  Dr. Lucey was sufficiently disturbed by what he had read to propose that the two of us convene a conference in which parents and neonatal professionals could meet and discuss the problems identified in those documents.

I quickly assembled a group of articulate NICU parents who prepared for the conference by drawing up a manifest entitled, "The Principles of Family-Centered Neonatal Care." 

This was to serve as the basis for our conference discussions and as the first draft of an article that was published in Pediatrics last November.³²

Although many of the principles relate to ethical decision making and informed consent, several are relevant to our discussion here today. In Principle 5 we call for increased attention and research into the area of pain control, an area which, as I indicated earlier, we feel is closely related to environmental stress. 

In Principle 6 we urge parent and professional collaboration to ensure an appropriate environment for babies in the NICU.  We refer to studies suggesting harm from light, noise, handling, sleep disruption, supine positioning, and the routine use of invasive procedures. We call for more research to investigate these potential hazards and for prudent protection of the babies in the interim.  We also advocate the use of primary care nurses in developmental care.

In Principle 7 we call for randomized controlled clinical trials of poorly validated interventions. And we suggest that experienced parents have a voice in determining the research agenda and in establishing outcomes of interest for neonatal studies.

At our conference,³³ which was held in June, 1992, in Burlington, VT, we were fortunate to have as one of the participants. Dr. lain Chalmers, who was then directing the Perinatal Epidemiology Unit at Oxford. 

Dr. Chalmers was particularly interested in having parents advocate for randomized controlled clinical trials, and in having parents involved in the design and critical evaluation of research.³⁴  Dr. Chalmers supported this proposal by citing a number of examples of contributions made by consumers and consumer groups in the areas of obstetrics and gynecology research. 

For example, the hypothesis that diethylstilbestrol (DES) caused cancer in daughters of women who had taken the drug during pregnancy was first stated by the mother of a woman who developed cancer.³⁵

More recently, it was a mother who noticed the association between low alpha-fetoprotein and risk of Down syndrome.³⁶

According to Dr. Chalmers, a compelling reason to involve consumers in research that affects their lives is that they will often come up with important hypotheses which will be supported by subsequent, systematic research. 

Parents, who have the largest stake in the results of perinatal and neonatal studies, will also ask questions about research design that may not have occurred to the professionals.

For example, when mothers reviewed a proposed trial concerning aspirin and the prevention of pregnancy- induced hypertension,³⁷ they were disturbed to find that no provisions had been made to provide follow-up for the children who had been exposed to aspirin in utero. This was upsetting to the mothers since pregnant women had been warned for decades to avoid aspirin during pregnancy. Pressure from the mothers enabled researchers to put pressure on the Medical Research Council, which eventually funded the follow-up study and strengthened the overall design of the trial.

To cite another example, consumer groups in the U.K are currently campaigning for randomized controlled trials to examine the use of epidural blocks as opposed to other methods of pain relief during labour.³⁸  In doing so, says Dr. Chalmers, consumers arc beginning to set the research agenda for the specialty of obstetric anesthesiology that actually owes its existence to epidural blocks!

Throughout our conference in Vermont, both parents and physicians noted the existence of a double standard in which research on "high tech" therapies is better funded, more easily published, and more influential in changing care than is research in the "low tech" areas of pain control and environmental and developmental interventions. 

Dr. Chalmers challenged parents to follow the example of parents in the United Kingdom and use whatever consumer clout we have to influence the neonatal research agenda and end this double standard.

Were trying to do this as best as we can now, and with increased professional support and collaboration, we can do even more. For example, a month after "The Principles for Family- Centered Neonatal Care" was published, the Department of Education in Colorado approved a grant to implement these principles throughout the NICUs in the state.³⁹ 

This effort is currently being directed by Dr. Joy Browne, who is well known for her work in developmental care, and by Suzanne Smith-Sharp, a parent coordinator at Children's Hospital in Denver. 

The grant provides for the establishment of parent- professional teams in each nursery to analyze current care and to make recommendations for improvement. 

Parents who work on these teams at the individual hospitals also meet in a state- wide group to compare notes. Some of the parents have received special training in developmental care (NIDCAP training), and are now uniquely positioned and qualified to advocate for this care. 

Despite the short time the grant has been in effect, and despite major upheavals occurring in some of the units (in anticipation of health care reforms), the program has made some important differences in changing staff attitudes and policies.  It has also played a role in beginning a developmental care research project in at least one of the hospitals and is helping to incorporate elements of developmental and family- centred care into general nursery practice.⁴⁰

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Now I'd like to focus briefly on two other aspects of developmental care: that of professional intervention with families and that of family empowerment. The two dont necessarily go together.

I grew up in the 1950s and 60s with a younger brother who was diagnosed at an early age as "borderline autistic." The theory of autism in those days held that it was inflicted by cold, unloving mothers — refrigerator mothers they were called — who needed therapy themselves if their child was to improve. 

As was common practice then, my mother, not my brother, became the primary target of intervention. She was referred to a therapist to help her with her presumed disordered parenting. Never mind the fact that she had already managed to raise three normal children. 

After my son Edward was born, with all of his obvious and documented brain damage, I remember remarking to my mother that at least I wouldnt be put through the psychiatric mill the way she had been. I couldn't have been more wrong.

The theory of parent- infant bonding was current then, and it was fashionable in the therapeutic community to search out and intervene in the parental pathologies said to accompany improper bonding.⁴¹ The stages of bonding that parents were supposed to undergo were even charted in the medical record in some neonatal units.

Lynn Blanchard, past president of Parent Care, and one of the participants at the Vermont conference, tells of going to her sons bedside in the NICU, picking up the chart and reading the following words in reference to her visit the previous day:  Mother visited and behaved appropriately. 

"I went into a panic", said Lynn, "because first of all I didn't know I was getting a grade in behaviour and because I had to remember what I had done yesterday so that I could try and do it again."⁴² 

Inappropriate parental behaviour included things like asking questions about respirator settings and blood gases or, heaven forbid, questioning the ethical basis for intensive care of marginally viable babies.  Parents who did these things were said to be suffering from bonding disorders and were even characterized as potential child abusers.

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