Ab Initio International Spring 2009
INTERVIEW
 
Humanizing the environment for the preterm infants and their families: NIDCAP
An Interview with Heidelise Als, PhD

by M. Alejandra Viloria

Dr. AlsRecently, I had the privilege of meeting with Dr. Heidelise Als, Associate Professor of Psychiatry at Harvard Medical School and Director of Neurobehavioral Infant and Child Studies at Children's Hospital Boston. Dr. Als has devoted her life to observing and studying the behavioral organization of the newborn infant, primarily the preterm and high-risk infant. Dr. Als is the author of the Assessment of Preterm Infants' Behavior (AIPB) and the originator of the Newborn Individualized Development Care and Assessment Program (NIDCAP).

www.nidcap.org

In her research work, she has collaborated with her husband Dr. Frank Duffy, a neurologist at Children's Hospital, on the use of electroencephalogram (EEG) as a measure of brain function in the preterm born infant and child.

Als Laboratory

The Duffy Group

Born in Germany, Dr. Als studied Pedagogy at the University of Eichstatt in Germany. She came to the United States and received a Masters degree in Education and a PhD in Human Learning and Development from the University of Pennsylvania. She did postgraduate training at the Child Development Unit at Children's Hospital Boston under the direction of Dr. T. Berry Brazelton.

Currently, she is the founder and President of the NIDCAP Federation International, a non-profit organization, which provides national and international training for advanced professionals in the field of NICU developmental care implementation.


Dr. Als, thank you very much for your time and for all your work with preterm babies. It is now well known that your Individualized Developmental Care model is changing Newborn Intensive Care Units (NICUs) around the world!

Q. How did NIDCAP develop?
Early on, I studied mother-infant interaction among healthy full term newborns and their mothers. I interviewed mothers during pregnancy and then I observed the babies within an hour of delivery as they interacted with their mothers in the delivery room. I followed them 24 hours later, at 48 hours and again at 72 hours. I observed the interaction with this question on mind - "what impact is the baby having on the mother? How much does the baby direct or shape the mother's behavior?" In those days, everyone was asking how much mothers shaped the baby. Bowlby's work on attachment had been published and Bowlby proposed that the newborn keeps the mother close by crying. The mother wants to alleviate the infant's crying until the infant smiles at around 6 weeks and then things shift to positive social communication. I thought there was more to the newborn that just crying, that there must be other connections that the baby sets up. So that is why I was very interested in this early communication.

And to make a long story short, I could see that eye-opening had a tremendous effect on the mother, and that these young inner-city unmarried mothers worked so hard to get their new babies to open their eyes and look at them. Sometimes they would shake the baby, saying, "wake up, wake up look at me!" and when the baby opened his or her eyes they would get all excited and happy, saying, "Oh! There you are". They were trying to connect to the baby and trying to elaborate on the baby's response. They were not doing it consciously but that was just a pattern that I observed which expanded on the baby's attention. They would say, "Oh look at me, oh look how cute you are ...you look like your uncle..." and I was looking at how this early little dialogue tended to terminate. I discovered that either the mother would run out of text and would pull the baby close, kiss and hug the baby, and by the time she held him out again the baby would be all scrunched up from having her face against the mother's own face. Then they would build up again; if the baby could not hold the dialogue he or she would sneeze or yawn. I thought this was very interesting because when the baby yawned, the mother would change how she spoke to him. "Ah, I am making you tired", she would say, and she would start to get all worried. Or if the baby sneezed she would say "kerchoo" or 'bless you". And with that, her face changed, so that after the sneezing or yawning when the baby looked back again, they were ready to start at another lower set point. It is what T. Berry Brazelton has described beautifully when the baby is a little older, in that the baby is definitely shaping the mother and not just by crying, but very much by eye opening and looking at her.

Karin Grossman in Germany replicated this work with German mothers; it is probably universal, although I don't know that. When I started my work, I was told that these young inner city adolescent mothers wouldn't show me anything but I realized that it if its pre-wired it must be there for everybody. I didn't want to focus just on middle class educated mothers, because they have another layer of expectations at the same time.

I was very interested in the early personality of the baby and the strengths the baby had in shaping the mother. Maria Delivoria, a pediatrician in Philadelphia, who is an internationally renowned neonatologist at this point, - she is partially retired now but she continues to work -, asked me what I was doing: I was the only psychology graduate student at the time in the nursery, and then she told me there was a whole other group of babies that I would probably find even more fascinating - "the early born babies" - that she and her colleagues were trying to keep alive. She said that I would have to come at 6:00 am in the morning for rounds. When I arrived I was astonished at these little fetuses that I saw coming from the delivery room, as they tried to keep themselves tucked together and fought against all the people who were trying to do things to them. Sometimes they had to be tied down by the wrists and ankles so that they could get intubated. Eventually they would get overwhelmed by the adults. There were not that many ventilators available at the time, so that many of the babies were being bagged by hand. I got to do a lot of bagging because there were never enough hands to go around. The lung was the most difficult and important to keep going for a fetus outside the womb so that bagging was an attempt to try to keep the babies alive. Maria Delivoria wanted to find out if she were to give these little preterm infants a new oxygenated blood supply with a full body transfusion, would this make the lungs of these babies better. This did not work so well in the long run.

I could see how much energy the baby lost because of the focus on the lungs. "Why are these babies so determined?" I wondered. "What are they trying to accomplish?" The babies seemed to be determined to return to the situation and opportunities they had in the womb. The only pictures that were available of fetuses at that time were the fiber-optic pictures by Nielsen. I looked at them to see what these babies do when they are not outside and I saw that they tuck themselves in and they hold their umbilical cords and embrace themselves. We are violating their developmental expectations, I realized. The next question I asked myself was: How could the doctors take advantage of what the baby wants to do and at the same time keep the baby alive and make their own lives and efforts easier?

In my own dissertation, aside from these observations, I also used T. Berry Brazelton pre-publication version of his Brazelton Scale that had been brought to my attention by my Graduate Professor Sandra Scarr. I was looking for an evaluation of the baby that would get at the personality of the baby. All the neurological evaluations were not telling me anything about the personality of the baby. Sandra told me that there was this doctor, her own children's pediatrician in Cambridge, MA and that he was working on something like that and his name was T. Berry Brazelton. She told me to write to him and ask what he was doing. I came from Germany I thought it was inappropriate to be so direct but she said "No, no, no! Here in America things are so different". So, I wrote the letter to Dr. Brazelton and he wrote back and he said: "By all means, I am working on this, come up and visit". I went up to Boston, from Philadelphia I went to a meeting at Dr. Brazelton's house where all his colleagues were meeting and discussing the definitions of the different subscales of the Brazelton Neonatal Behavioral Assessment Scale (BNBAS). They were talking about amazing aspects of behavior such as the control of motor movements, irritability, arousability, consolability, and orientation and many more. So, I thought what Berry Brazelton was doing was very, very interesting and very important.

And I secretly thought maybe this could be adapted to the early born babies I had seen. A little later Dr. Brazelton invited me to join him at the Child Development Unit, where I learned the BNBAS. But I always wanted to get back to see and understand better what the preemies were doing. I wanted to develop a behavioral catalogue, this time for preterm infants, as I had done for full-terms in my dissertation study, using 15 seconds by 15 seconds observations. I stood there at their incubators, now at the Boston Hospital for Women, Lying-In Division, as the maternity Hospital was called, which was just down the street from the Child Development Unit, trying to understand what these babies were trying to say. They seemed so sensitive and hyper-reactive to everything that was being done with them. I tried to get a sort of a vocabulary of their behavior that was predictable.

One day, one of the nurses asked me what I was doing, why I was always standing there taking notes. I told her that I thought these tiny babies were trying to communicate but that there were other people who were saying that those babies did not have enough brain capacity to process what was happening. I pointed to their reactions. "Look at them, they are over-reacting and they don't dampen their responses; if it gets too exhausting, they cannot breath any longer and the nurse or doctor has to come and give them more oxygen and then they get over oxygenated, and they have to bring the oxygen down again", I pointed out. It was clear that this was frustrating for the baby and we needed to do better by them. It had taken me quite a long time until I felt I had a pretty good handle on their behavior and understood them. I would have loved to try to change the way they were cared for - but I was not a nurse or a doctor and so I needed to engage one of them to try and see if the care was made more acceptable to the baby, what would happen. Could it be done safely and would it be better? Would it make a difference?

The nurse who had asked me, her name was Pat Linton, offered to try what I thought might perhaps make it easier for the baby. So I asked her if she might try to bed the baby on the side instead of on the back, and maybe try to cradle the baby with her hands and help the baby tuck in and see if the babies liked it. This worked very well the very first time. The baby visibly relaxed and soon required less oxygen as Pat stood there with the baby holding her hands cupped around the baby as in a cozy nest, made by her warm hands. It was hard for Pat to take her hands away again from the baby when another baby in her care sounded the alarm and she had to step to that baby's incubator. Pat was very brave and she paved the way for some of the early modifications in care that made a difference. Then there was another nurse, Gretchen Lawhon, who has stayed in this field and she completed her own doctorate, a few years later. She also was very brave and said that "we can change the outcome for the baby. But, show me what you are looking for and we can work on this together". Many of the nurses gradually became very creative and inventive, inspired by what they saw in the babies and the difference they made for them. It was clear from the beginning that you had to build a team to get anywhere with this work. When the nurses heard about Harry Harlow's work on the importance of touch on fostering the mother-infant relationship and the that contact and cuddling was much more important than nutrition per se, the nurses made "mother mounds" or "cloth mothers" for the babies, by rolling up soft blankets on the warming table and shaping them like a mother's chest, and then placing the baby chest-to-chest with the 'blanket mother'. I suggested that maybe we could invite the real mothers now that we knew the babies liked to be on the "mother mounds". Likely they might even prefer their own mothers to the blanket mothers. Of course, the mothers longed to be there to hold their babies against their breasts, where they fit so well and wanted to curl right up. The unit was very tight on space. No one had space for mothers, and no one had ever thought about the possibilities that mothers at the Incubator sites would provide. Early on mothers were not allowed in at any time, and later they had brief visiting hours. The light also, used to be so bright. It was not a comfortable place for mothers and immature babies. But then the nurse manager, Rita Gibes, asked me if we wanted darker care rooms, and thought that might be better for these small babies. And she pushed through a decision that each bed had a spotlight with its own dimmer switch, so the whole room could be in the dark except that one baby that had to be worked with. As a result, there first arose a big tension between the doctors and the nurses. The doctors were saying the babies had to be nude and that they needed lights to see them at all times. The nurses, on the other hand, were saying they knew and understood the babies, and were caring for them very safely. The doctors in the unit replied that we needed to prove that this whole approach was not dangerous. They thought it was dangerous to put the baby on the side and on the mother mounds and to cover up the incubators, and have the rooms dark.

One of the young neonatologists, Liz Brown worked with babies who developed severe lung disease, by having to be on the ventilator for a very long time, and she saw that if a baby was kept calm and comfortable, the baby breathed so much more easily and didn't need as much oxygen. She became an early 'convert' to our way of understanding these small babies. So, Gretchen, Liz and I wrote a grant to the Hood Foundation, and they awarded it to us. The grant came with the internal stipulation that if three of the babies that received the baby cue based care, the experimental treatment, did not do well, we would have to stop the study. We found that these babies did really well, gained weight, and all around did much better than the controls.

By then, I had developed an adaptation of the BNBAS for pre-term infants, with more detail of preterm behavior in terms of their sensitivity and the timing of their responses, recognizing how much time it took them to respond. It was a much longer examination, as you cannot move through at the same pace as with a full-term baby. This is the APIB (Assessment of Preterm Infants Behavior)

I received several grants from the US Department of Education, and more recently from the National Institute of Health (NIH) to see if this kind of early intervention - that on Rita Gibes' suggestion, we called Newborn Individualized Developmental Care and Assessment Program (NIDCAP) - might help preterm babies develop better by the time they came out of the unit. It did, and the units started to change. We have now a series of eight randomized controlled trials in the research literature that have shown that NIDCAP reduces length of time on the ventilator, improves lung function, reduced bleeding into the brain, reduces length of time of tube feedings, and lengths of time of hospitalization, and furthermore improves brain function as studied with the APIB and with EEG, and improves brain structure as studied with MRI. Long term beneficial out come has been assessed at this point to age 5 years.

What we found is that when the baby is held for long periods on the mother's or on the father's chest, the baby does best, in terms of temperature, heart rate, and breathing rate. We must help set the stage for the mother or father to be fully relaxed. If we help the parents recline and have their feet off the ground on a comfortable leg and foot rest, they are automatically relaxed. When their feet are on the ground they cannot relax, but with her feet up, parents (and staff) became completely relaxed and their baby is resting on their chest and this is the best configuration for all care and in between care periods.


What are your dreams for the future? How do you imagine the future NICUs?
I am working towards individualized family "womb rooms". My real dream is, that we will get beyond incubators. Incubators are separating the babies from their parents. They make the baby sicker than the baby really is, in every one's mind. If we had rooms that have the atmosphere of an incubator, that are warm enough and that have enough humidity that parents could be there with little or no clothing and have the baby on them and the staff could come in and leave again, and we had central monitoring to make sure the baby is secure at all times, and we have staff that are well educated and supported to be nurturant at all times, so that the parents feel well cared for, then we will have come a whole step further. For that to happen, all the staff including all the nurses in the NICU need to have their own emotional support and back-up, and special time to re-fuel and re-group. It is a hard work to care for these small babies and their families. This is often underestimated. Human interactive caring work is much harder than any kind of mechanical and technical work. In this NIDCAP work NICU caregivers are expected to be fully engaged and emotionally present and attuned at all times.


How has NIDCAP been implemented around the world?
We have sixteen NFI (NIDCAP Federation International)-certified NIDCAP Training Centers of which ten are in the US. I think it has been tougher in the US; somehow the culture is very technologically oriented. The dream I have of the parents with their babies throughout the baby's hospitalization, is still hard to realize here. I would like the parents to "live in". Sometimes the parents are not yet really considered part of their baby. In the US mothers of preterm infants are discharged 3 or 4 days after delivery. Maternity leaves are 6 weeks, if the mother is lucky three months, but the baby may be in the NICU for three months or longer. When the mother brings the baby home, she has no maternity leave left. So she chooses to go to work, while the baby is in the unit, and saves up her maternity leave for when the baby comes home. This is criminal; it's a 'catch 22'. The mothers tell us: "I go to work and I cry at work, I am useless, but I have to get my paycheck and all I can think about is my baby. At the end of the day, I come to the unit and I am exhausted from the exhausting days of being away from my baby". Our public policy must be changed; mothers and/or fathers or another close family member or other close person of the parents choosing must be entitled to be hospitalized with the baby in the NICU while receiving full benefits. Only then will NIDCAP fully reap its benefits.

There are 5 NIDCAP Training Centers in Europe; they are in Sweden, France, the Netherlands, the United Kingdom and in Belgium. In Sweden, NIDCAP is implemented country wide at its fullest. NIDCAP is the standard of NICU care. In Sweden, at the Scandinavian Training Center NICU at the Karolinska Hospital Danderyd, the NICU has individual family care rooms where all family members: mother, father and siblings stay and sleep with their preterm infant throughout the infant's hospitalization. The parents receive full financial support during their baby's hospitalization. They receive additional support at least until the baby is two years old. Similar rules apply in Germany and several other European countries. One of the NIDCAP Training Centers is in Argentina, in Buenos Aires at a Public Hospital. In Argentina as in any countries in South America, this work is really at the frontier. I am very proud of our very courageous Argentinean NIDCAP Trainer and Center Director. She helps us keep our perspective when we think it's difficult up here in the US. A number of the NIDCAP trainers have begun to make connections and/or already do much work in Norway, Italy, Spain, Germany, Canada, Australia, the Far East (Taiwan, Mainland China, and Japan), Israel, and a number of other countries. Everyday I receive inquiries from professionals around the world. Our long-term goal is to establish training centers in every language group so that training and communication may be facilitated in the long run.


Dr. Als thank you very much for your time and your wonderful work that humanizes the NICU for preterm infants and their family.

We must fight for NICUs that are preterm-friendly and family-friendly!


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