William Cvetnic, M.D., Medical Director, Children's Medical Ventures
I would like to read for you descriptions of two types of NICUs. These are very real places and each of you may relate to one or the other through your own personal experiences. In the first [SLIDE 1,2,3, tape of Moussoursky's "Night on Bald Mountain"], babies are denied undisturbed sleep because of constant human contact most of which is painful and delivered without warning; holding and social behaviors are discouraged; physical restraints are common; lighting is constant and bright; there is little consistency among caregivers and parents must seek out information; treatment is depersonalized and all of this deprives families of privacy and togetherness. In the second NICU [SLIDE 4,5,6, tape of Pachelbel's Canon), babies and parents are the center of attention and love and gentleness are top priority; caregivers constantly assess for the possibility of pain and utilize methods to alleviate it; caregivers use methods to comfort infants while performing exams and therapies; caregivers use the baby's correct name and sex and acknowledge the whole baby; personal items are freely used to spread comfort; parents are greeted warmly and made to feel welcome and comfortable and finally a dying baby is never left alone. These NICUs were described by Dr. Gordon Avery, a leader in the development of modern neonatal thinking, in 1989 and were published in an article entitled "The Gentle Nursery: Developmental Interventions in the NICU of the Journal of Perinatology (Volume 9(2): 204-206) [SLIDE 7]. The first description is what Dr. Avery referred to as the "violent NICU," [SLIDE 8] versus the second, which he calls the "gentle NICU."[SLIDE 9] These descriptions obviously represent NICUs at the opposite ends of the spectrum, yet both co-exist within the framework of neonatology in the United States today. They are as different as the two pieces of music which accompanied them - Mossoursky's "Night on Bald Mountain" and Pachelbel's "Canon." The music pieces vary greatly in terms of their style, intensity, and feeling. Such is the case with the NICUs as well. These differences, [SLIDE 10] however, go beyond the physical -beyond the so called "skin" of the unit - the outer walls and the inner dividings. They go to the HEART of the unit and tell us quite a bit about who the people are who are working there. They tell us what their overall philosophy of care is; they tell us what is important to them; they tell us what they all think and feel about the babies and families for whom they are providing care. The word, "caregiving," [SLIDE 11] then takes on an additional meaning beyond the monitoring and medical treatments given to these small, fragile patients. They truly imply the state of providing therapy with care - that is with feeling, empathy and compassion.
I have heard stated that this philosophy of gentle care, which we now call developmentally supportive, family-centered care, pretty much came about in the early to mid 1980s. If we examine some of the historical writings regarding baby care and pediatrics, we can see that that is not the case. Take the following as examples. In 1797, a physician, Dr. William Cadogan, wrote a letter to one of the Governors of the Foundling Hospital in London, entitled "An Essay Upon Nursing and the Management of Children from their Birth to Three Years of Age." In this essay on what he feels to be the proper way to feed babies, he also writes, [SLIDE 12] " Ought it not therefore to be the care of every nurse and every parent, not only to protect their nurselings from injury, but to be well assured that their own officious services be not the greatest the helpless creatures can suffer?" In 1898, Dr. G.F. Blacker, (Assistant Obstetric Physician to University College Hospital) wrote in the Practitioner an article entitled " The Care and Feeding of Premature Infants." In this essay, Dr. Blacker sets stage for contemporary thinking with the following statement:[SLIDE 13]
" The day has long gone by when all that could be done for a premature baby was
to wrap it in wool and place it by the fire....................; or the practice, prevalent
even quite recently............of placing the premature baby in a jar filled with
feathers."
But he goes on to make a number of rather astounding comments, which are certainly familiar to us today:[SLIDE 14]
"The question of the child's weight at birth is, however, of much more importance
than its actual age, since the possibility of rearing it depends most of all upon its
size and degree of development."
and
[SLIDE 15]
" The principles to be observed in the care of premature babies can be deduced
from the conditions of intrauterine life."
and
[continue SLIDE 15]
"As soon as the premature baby is born it should be placed in the incubator, if one
is available."
and
[ continue SLIDE 15]
"..but in the case of very premature children......the avoidance of any unnecessary
handling is of such extreme importance......."
or
[continue SLIDE 15]
" Light should be rigidly excluded until nearly fully term and the window of the
incubator should therefore be covered with a dark cloth."
In 1902, Dr. J.W. Ballantyne wrote, "The Problem of the Premature Infant," which was read before the Edinburgh Obstetrical Society and then published in the British Medical Journal [SLIDE 16].
" The premature infant........is admirably fitted to continue living in the uterus, but
is ill provided to meet the exigencies of an extrauterine existence. His tissues have
not had time to mature, and he is not ready for so complete a change in
environment. He is like some dweller in the hot plains of India who has been
transported in a moment of time on some "magic carpet of Tangu" to the chill
summits of the "frosty Caucasus;" with no opportunity for acclimatization such as
a gradual transit affords; he is suddenly submitted to the severe strain which so
marked a change in surroundings entails."
Aren't these remarkable statements - to hear such modern thinking from so long ago? Is there any better analogy for the sudden, harsh transition of the preterm infant from the intrauterine environment to that of the traditional NICU? With respect to management of the premature infant, Dr. Ballantyne goes on to write:[SLIDE 17]
" The three leading principles which ought to guide us in the performance of this
difficult task will be: First to prolong the most useful and the best features of fetal
life after birth; secondly, to supply some of the features which cannot be
prolonged; and thirdly, to awaken and strengthen the dormant or inefficient
functions peculiar to postnatal existence...................we can with some
success endeavor to create an environment for him which shall in some points
at least resemble the intrauterine nidus."
This last statement is the focus of what we are trying to do with the use of developmental care.
Dr. John Lovett Morse, an Instructor in Pediatrics at Harvard read an essay on "The Care and Feeding of Premature Infants" before the Washington Gynecological and Obstetrical Society on January 20, 1905, which was then published in the American Journal of OB and Disease of Women and Children. In regard to the care of preterm infants, he states [SLIDE 18]
"It is unquestionably of advantage to protect them from noises, bright lights and
handling, because in this way the normal intrauterine conditions are more nearly
approached...........Premature babies must be left alone and not handled."
All of this thinking led to the development of the so called "preemie nurseries" of the post war era. [SLIDE 19] At this time, we find premature infants of various gestational and postconceptional ages grouped together - away from term babies and away from any other baby with illnesses of any kind. They were placed in relatively small, dimly lit, quiet rooms and cared for in the incubators of the day. For the most part, they were fed and left alone to hopefully grow. At the time, little could be offered for those infants who manifested the problems and dangers of prematurity of which we are now aware. We began to learn more about these problems though the 1940s and 1950s. One of the big concerns to preterm infants with regard to being separated from any other baby was their susceptibility to infection.[SLIDE 20] My mentor, neonatology pioneer, Dr. Lou Gluck was able to show that infection is spread from hand to hand by caregivers and that this is what leads to the possibility of infection , so - preterm infants did not have to be isolated from other babies. It was because of this that Dr. Gluck was able to begin the first NICU as we know it to be at Yale in 1960. This was quite an accomplishment, and even warranted a visit from Walter Cronkite for a national news broadcast. It truly represented the beginning of the field of neonatology.
From the 1940s, it was found that some babies with respiratory distress syndrome (RDS, hyaline membrane disease) could be successfully treated with oxygen, and that if a little oxygen was good, more was better. This philosophy came at a very high price - the price of discovering a pathological process then called retrolental fibroplasia (RLF), now know as retinopathy of prematurity, or ROP [SLIDE 21]. Unfortunately in the 1950s, because of the huge incidence of blindness as a result of this, the reversal occurred - too little oxygen was used and babies suffered from hypoxia and respiratory failure.
[SLIDES 22, 23] The first type of ventilation with which preterm infants were treated was negative pressure, where the baby was enclosed in a tank or cuirass of the kind with which polio victims were treated. Babies who were smaller and smaller and sicker and sicker were successfully treated. Because of the difficulties inherent in maintaining smaller babies in this negative pressure tank, positive pressure ventilation using adult ventilators began to be used. [SLIDE 24] The problem was that we did not have positive pressure ventilators specific for small babies and that at the time, ventilators did not allow for continual gas flow, meaning that the patient could not breathe for himself while on a ventilator - the ventilator had to provide all the breaths in order to ventilate and oxygenate the baby effectively. This was in contrast to the use of the negative pressure ventilators where the baby could still breathe while his chest was surrounded with negative pressure. The use of positive pressure ventilation meant that the ventilators had to cycle rapidly and at high pressures. Another severe price had to be paid by this. In 1967, [SLIDE 25]Dr. Northway at Stanford introduced the term bronchopulmonary dysplasia - after reviewing years worth of x-rays from babies who were treated in this manner.
From the 1970s on, however,[SLIDE 26] we saw the development and introduction of continuous flow ventilators, the use of continuous positive airway pressure (CPAP) and positive end-expiratory pressure (PEEP), broader spectrum antibiotics, the use of indomethacin for ductal closure, improved infant formulas and feeding techniques, high frequency ventilation, surfactant administration, synchronized ventilation, pulmonary function monitoring, more drugs being applied for the use in neonates, and much more. All of this allowed physicians to successfully [SLIDE 27] treat more and more babies, babies who were 1000 then 800 then 600 grams; babies who were 29, then 27 then 25 weeks; and babies with congenital heart disease, severe infection and all other organ system failures. It is no wonder, then that our NICUs had developed into this "violent NICU" that Dr. Avery described. Where were we going to put all of these babies that were living? What were we going to do with all of the monitors and machines that were now necessary to keep these babies alive? What was to become of the parents and other family members in this ever-increasing technocracy? Where was there room for them? When did we ever have time for them? [SLIDE 28]How could we ever go back to the feeling of the post-war "preemie nursery?"
We know the answers to these questions now, of course. All of the babies would be in one large area, [SLIDE 29] usually very close together, they would all be supported, as needed, with as much of the ventilators and monitors that we could muster up; caregivers' shift time became busier and busier, often frenetic, and in all of this ----- the family was pushed aside in order to try to save their baby.
Let's add to this one more element and that is the creation of the "NEONATOLOGIST." With the early 1970s came the first neonatal medicine training programs, and again Dr. Gluck was among the very first to give us the pediatrician who went through a formal two year training program in neonatology. The training was very much focused on scientific research and the further expansion of the field - new technologies, the biochemical bases for diseases, newborn development as examples. Naturally, this was good - but again, it came at a price. This time the price was the creation of what I call the neonatal "mad scientist." I certainly do not mean "mad" in the gothic sense where we conjure up in our imaginations a physician trying all kinds of new formulae and treatments on helpless babies [SLIDE 30]. Rather, the physician scientist who often became more scientist than physician- where caring and compassion were somehow relegated a second (and sometimes distant second) place to science.[SLIDE 31] In many cases, and we see this today, the physician became engrossed in the science, the research and its application and grew away from his role as healer, patient advocate and teacher. Much of the direct patient care was left to the newly created neonatal fellows, the pediatric housestaff, the nurses and eventually the nurse practitioner[SLIDE 32]. Why? Neonatology became an academic endeavor and neonatologists were for the most part associated with university programs, where the priority was to do your research, obtain grants and publish your results - do more and more for the prestige of the university. The patients, the babies, while being treated with the very best technology and modern medicine, were often left in a harsh, bright, noisy environment, where they were handled incessantly by numerous caregivers every day; they were left with very little sleep, and parents came to truly be "visitors" - permitted to come in only during certain times, stay for only a certain amount of time and do very little for their baby when they were there.[SLIDE 33] Generally, everyone was too busy taking care of the many sick infants, running to labor and delivery and performing transports to really spend any time with the family and to explain and educate. In essence, with respect to the issues of developmentally supportive, family-centered care, we entered the Dark Ages.
This violent NICU came into questioning for the most part in the late 1970s through mid 1980s.[SLIDE 34] A number of clinicians, scientists and allied medical personnel began to think about what people thought in the past and about all that came to be known with respect to the developing human and the development of the central nervous system. This was, in essence, the beginning of the Renaissance for developmental care. These people realized and were able to show that the development of a preterm infant [SLIDE 35] could be altered depending on the types of environmental influences to which he was exposed. The brain and nervous systems of these infants is still in the process of being developed - but OUTSIDE the uterus in a very different environment from where the development should have been taking place. It was shown since the early 1960s that the brain size, complexity and neural connections could vary greatly with different environmental influences. This should just be common sense to every one of us, but somehow, it is not. The basic science of what is known as neural plasticity has been translated into a number of clinical investigations and reports over the years, which have now shown us that preterm infants do better in many different ways [SLIDE 36] when we consider their state of development, their individual behaviors and make every attempt to control their environments so that it is closer to that of the intrauterine environment as opposed to being further away. In all of this, however, probably the most important element is to not lose sight of who is taking the baby home [SLIDE 37]. It is YOU - the parents, the families -- the ultimate medical consumer. We must therefore incorporate the family from the time of admission - NO, from BEFORE admission through discharge and then into the home into every aspect of care of these babies. For it is only under these circumstances that our patients will achieve optimal care.
All of this sounds so simple, so common sense, as I stated earlier. Why then, you may ask, do we see such a discrepancy in care across this country? The answers, I believe, become evident when we ask caregivers why they do not practice developmentally supportive, family-centered care. We must not take the answers, however, at face value, but instead try to find out what they really mean by their answers. Following is my interpretation:
* WHAT THEY SAY WHAT THEY REALLY MEAN
There isn't any research behind what is being I really am not familiar with this work
advocated. [SLIDE 38] because I haven't read it. [SLIDE 39]
This is just fluff. [SLIDE 40] I would rather take care of really sick
infants with all of the high tech stuff
and leave all the rest to others.
[SLIDE 41]
We DO practice developmental care. We turn down the lights sometimes.
[SLIDE 42[ [SLIDE 43]
It involves yet another expenditure which we There is no immediate financial
just cannot afford. [SLIDE 44] gratification. [SLIDE 45]
Our babies do very well without this. We don't really know how well
[SLIDE 46] babies are doing WITH
developmental care.[SLIDE 47]
There are many reasons why we should practice developmental care, however:[SLIDE 48]
* The basic research from neural plasticity supports it.
* Clinical studies support it.
* Cost savings have been demonstrated.
* Babies do better medically.
* Babies do better developmentally.
* Parents are more comfortable, knowledgeable and secure.
* It WILL become the standard of care.
But even if there were NO research, even if none of the above were true, the ONLY reason that is and would be necessary to practice developmentally supportive, family-centered care is that [SLIDE 49] IT IS THE ONLY ETHICAL, HUMANE WAY TO TAKE CARE OF BABIES AND THEIR FAMILIES. Nothing else is acceptable.
Let me conclude by giving you a very specific example on the impact of one aspect of developmental care on myself when I was the Clinical Director at Magee Womens Hospital at the University of Pittsburgh. I had been caring for a 25 week, 600 gram baby boy by the name of Joey [SLIDE 50]. Joey had the usual problems of such small size and low gestational age - RDS and a PDA that just would not close. Because of the later, feeding was difficult, fluid administration was difficult and at a month of life, Joey had not regained birth weight, could not be fed and his parents were frustrated and angry. We started off having a very good relationship, but as Joey was not showing improvement (other than weaning to low ventilator settings), they became more distant. I got to the point where I would first sneak a peak into the NICU to see if they were there before I entered. I knew that he just needed a little more time to get his PDA closed, and I felt that this would occur without surgical ligation. I therefore decided that to bide some time, I would offer to the parents something which I hoped would make them feel better, feel closer to Joey and at least be able to contribute to his comfort in some way. At 5PM on a Friday, Joey became our first "kangaroo kid."[SLIDE 51] He was 600 grams on a rate of 20 and 30% oxygen and we had no policies or procedures and had never done this before. Needless to say, the staff was skeptical and frightened. The parents had heard about kangaroo care and were eager to proceed. So we all decided to do it as long as I and our developmental specialist were there and immediately available for problems. The first session was about 45 minutes and both Mom and Dad participated. Everyone was thrilled. It went extremely well - Joey maintained his temperature, weaned to room air, the nurses smiled, the parents smiled and I think that even Joey smiled. I was certainly ecstatic. Especially when I came back on Monday morning to find little signs on 5 incubators stating that "I'm a kangaroo kid." This really changed my relationship with the parents - and after this we were able to talk again - even about the problems and setbacks. Joey did fine - his duct closed, he ate and gained weight and the parents continued to kangaroo care for longer and longer periods and set the example for the rest of the unit. [SLIDES 52,53,54] We immediately added kangaroo care policies and procedures to the others for the unit.
In our developmental care training sessions, I frequently hear from participants " How could I have been doing the wrong thing for so long?" We are eager to point out that this is certainly not the case. It is only if we IGNORE the information that we have, if we turn our backs on it BEFORE we have truly evaluated it that we are then at fault. If we do not approach everything in an open-minded and exploratory fashion, then we will forever remain in the Dark Ages and never make that transition to the Renaissance. Such is the case with developmentally supportive, family-centered care. All of us can only benefit from it. It will help us to put the "care" back in "caregiving" [SLIDE 55].
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