retinopathy of prematurity.org :
Preemies and their parents get short shrift
in many intensive care nurseries
I want to thank Ross Products Division, Abbott Laboratories, for sponsoring this important conference and Dr. Saigal for inviting me here as a parent representative.
I will be discussing parents' concerns about caregiving and environmental issues in the NICU. I will review some of the work activist parents have already done in neonatology and make a few suggestions about ways parents and professionals can work together to bring about positive changes in nursery caregiving.
My own familiarity with these issues began when our son Edward was born prematurely on September 11, 1975. I was suddenly thrust into a strange world I never knew existed, although, at the time, I was working in a medical facility and considering a career as a physician.
I have not been alone in finding the NICU a strange place. One mother described her nursery experience by saying it felt as if she had been "sucked into a vortex that made Alice's adventures in Wonderland seem tame by comparison."1
Others have described the NICU as a visit to a strange planet2 or a nightmare out of Kafka.3
The pivotal moment for me came when we were told there was no hope for our sons survival. I responded by saying that if this were the case then we didn't want any heroic measures to be taken. The doctor replied that nothing heroic was being done, though at the time Edward was on a respirator, with nearly every organ being supported artificially.
I knew then that there was either something terribly wrong with me and my perception, or something terribly wrong with the doctor and his. Like many mothers who have just been through a premature delivery, my self- confidence was at a low. and it didn't take me long to come around to the view that the doctor was probably right in his perception of things. He was the expert, he must know what he is doing.
After I had made this cognitive shift, it became very easy to nod and go along with the program when we were told that our baby couldn't feel pain and didn't need anesthesia for surgery, or that he was too neurologically immature to be bothered by the lab phone that rang loudly beside his warming table or by the bright bank of lights that blazed over him as he lay there, spread- eagle, looking to all the world like a frog on a dissecting tray. What these babies needed, we were told, was stimulation, and plenty of it.
It was true that Edward just lay there on the warming table, motionless and unresponsive despite all the dreadful things that were being done to him and all the chaos around him. He stayed that way for a long time — at least until the doctors took him off Pavulon.
Even then, I found it more comforting to view my son's newly acquired responsiveness as a sign of maturity. I tried not to think about the implications of the fact that he had spent his earliest and most traumatic days fully conscious, but in a chemical straitjacket.
Knowing what I know now, it amazes me that I was so easily able to overcome my own common sense and parental instincts and allow care that seems so obviously harmful.
What amazes me even more is that, despite the growing body of research on the benefits of developmental care and despite the impressive changes being instituted at some hospitals, many babies are still treated as my son was two decades ago.
I am amazed when I hear that parents are still being told their babies dont feel pain, or that premature babies are somehow uniquely protected from levels of light and noise known to damage laboratory animals and adult humans, or that parents are still not being properly informed or involved in caring for and making decisions for their hospitalized babies.
Many other parents share my concerns. This is evident from the topics chosen for the annual conference given by Parent Care, Inc. Each year there are well- attended sessions on developmental care, Kangaroo care, hazards in the nursery environment, and the need to make changes in nursery design.
Support group surveys4, 5 have also identified environmental and caregiving issues as prominent parental concerns. Along with complaints about the light and noise, parents in these surveys give strong indication that they want caregiver consistency, primary care nursing, and an end, if possible, to the system in which doctors are rotated on and off a baby's case.
This fragmentation of care is a major source of frustration for parents trying to establish a consistent caregiving routine with their babies. In my own interviews with parents I have found that nursery environmental risks and non- contingent caregiving rank just behind lack of pain control, neonatal ethics, and violations of informed consent as issues that most disturb parents.
To a large degree, I feel that these issues are intertwined. Having recendy been hospitalized for major surgery, I can testify that the environmental stress involved in hospitalization quickly becomes indistinguishable from pain and can interfere with anyone's ability to recover.
While hospitalized, I was conscious of the fact that the stress I was subjected to as an adult patient was only a fraction of what many babies endure in many NICUs.
As for ethics, it would seem not only "ethical", but a matter of simple human decency to provide babies with as much protection from stress as possible. And, when a hazard is even suspected — as in the case of short- wave light, for example, it seems to me that the prudent, ethical approach would be to institute immediate protection for babies from this suspected hazard, not simply to issue ritualistic calls tor more research.
When parents make statements like this, some neonatologists respond by saying that multi- centre studies would need to be conducted to prove that it is "safe" to remove suspected hazards such as fluorescent lighting from the nursery.6
Yet, no studies were carried out for putting these lights into nurseries in the first place. The burden of proof, parents believe, should be on those who maintain that the lighting is safe for premature babies who were not designed by nature to be exposed to light at al1.7, 8, 9, 10
The same would apply to all other suspected environmental hazards. To me, these are the ethical issues involving the nursery environment.
As for the connection between environmental issues and informed consent, one has to wonder how many parents would give consent to current regimens of care in the NICU if they were able to read through the papers being read here at this conference.
Unfortunately, few parents have the knowledge necessary to advocate on their child's behalf when they enter the NICU. They tend not to get that information until it is too late to benefit their child.
This is in contrast to the area of prepared childbirth where parents are better able to anticipate an event, gather information, and choose caregivers and hospitals which offer the type of care that they desire. Parents involved in childbirth reform have also been successful in organizing to promote changes in medical and hospital practices which they felt were not in the best interest of the child or family.
Until recendy, there has been no concerted parental effort to bring about change in the NICU. There have been, however, some remarkable changes brought about by a few motivated individuals.
In 1983, after their three- year- old son died of AIDS acquired in a nursery blood transfusion, Helen and Jerold Kushnick of Los Angeles began a nationwide media campaign to alert the public to the danger of blood- borne AIDS. Despite the opposition of the blood banking industry and the hospital where Sam had been treated, the Kushnicks succeeded in bringing their case to the public, the President, and Congress.
To quote Dr. Arthur Ammann, a leading expert on blood- borne AIDS: "the Kushnicks have done more than those of us in the medical community to reform blood collection and transfusion policies. They have shown that persistent individuals can bring about major positive change.
There are babies alive today", Dr. Ammann concluded, "who would never have survived without the efforts of Helen and Jerry Kushnick.11, 12
Another persistent parent who made a difference is Jill Lawson of Silver Spring, Maryland13, whose prematurely born son died in 1985 after a month of intensive care. When Mrs. Lawson learned that her son had endured ninety minutes of chest surgery for a ductus ligation with no pain relief whatsoever, she tried to take the matter up with physicians at her hospital, one of whom is the author of a major textbook on neonatology.
She was told by this man that her baby was only a fetus that could feel no pain, and she was referred for psychological counselling to help her through what the staff considered to be an innapropriate grief response.14
Instead, Jill took her story to The Washington Post. In a matter of months, The Lancet published research by Dr. K. J. S. Anand showing the harmful effects of surgical pain on babies who are unanesthetized or under anesthetized for ductus litigations.16 Soon afterward, Dr. Anand's review article on pain in the fetus and neonate was published in The New England Journal of Medicine.17
Dr. Anand has told me that he felt Jill Lawsons public stand was largely responsible for the publication of his research and for the revolution in pain control practices that has been going on ever since.
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