Assisting the Trembling Hands that Hold the Tiny Hands:

Helping High-Risk Parents Improve Neonatal Outcomes

Michael T. Hynan, Ph.D.

University of Wisconsin-Milwaukee

Paper Presented at the Annual Meeting of the National Perinatal Association,

San Antonio, TX, Dec, 2001

I am honored to have been invited by the Program committee to talk with you, and I especially want to thank Paula Webb, Barb Greer, and the Program committee for including parents in a special way at this year’s conference. May this just be part of the early beginnings. I will begin this talk, as I usually do, by explaining why I am here. Ever since my son, Chris, was born and survived I have felt that I have owed a debt—to doctors, nurses, friends, my family, other parents, and to God. I realized that my payment would come from putting my Psychological knowledge to use to support other parents and help them adjust emotionally to the awful reality of having a high-risk baby. I also hope that I can help Perinatal professionals better understand the emotional turmoil felt by high-risk parents, so you can help us as families to get home in the best possible shape. So we can find meaning in our lives that have changed in the worst possible way. That’s why I came here. This is a debt I want to be paying my whole life, and I want to thank NPA for helping me make a payment.

The first part of my talk today will involve a description of a research program that has identified risk factors for posttraumatic stress reactions in high-risk parents. That’s the part of my talk more for the head. The last part involves suggestions for helping high-risk parents cope with their emotional distress. That part will be more for the heart.

If I say something that interests you today, you do not have to be busy writing. I will shortly have the text of this talk posted on my web page, which is on the screen. So this is the only writing you have to do.

This slide contains the symptoms of acute distress you observe in parents who walk into the NICU for the first few times. Isolettes, tubes, monitors, etc. are not what the parents signed up for. Derealization. Not very hard to understand: You have seen it often. You want to help parents get accustomed to an unreal world, but you find many of them in denial. Denial usually refers to an unwillingness to accept what has happened, so parents forget or suppress what you have told them. And it may frustrate you to repeat things. I believe that some, perhaps much, of what we call denial is really another process, dissociation.

Dissociation means that the information does not get processed; the message does not get through. In the first few days of the NICU, some parents feel fortunate if they can just walk into the NICU. With the shock of what has happened to us, we are lucky if we can breathe and talk at the same time. In order to survive, high-risk parents must block out a great deal of the horror surrounding them. Just looking at my baby, who is probably not a very pleasant sight, may occupy my entire intellectual processing capabilities. And I just can’t hear what you say about surfactant while I’m looking at my baby, even if I am nodding my head and trying to act pleasantly. I believe that this failure to process in dissociation is also responsible for the amnesic periods described by many high-risk parents. I have had high-risk parents describe memory losses of varying lengths of time. One high-risk mother has told me that she remembers nothing from her son’s birth until the time he walked. So I would like you to consider that what is happening may not be losses of memories, but failures to process information because of tremendous fear. And I would hope that if you look at this problem in this fashion, that you might be tempted to triple or quadruple your already overextended levels of patience with parents. We need it.

How did I come to study PTSD in high-risk parents? Only by listening to parents.

Parents have asked me many questions over the years. But, would you like to guess at the question I get asked most frequently by parents, parents whose high-risk babies are now healthy and 8 years old, or 12 years old. The question is, “Will I ever get over this, will I always be afraid”. Will I always feel so vulnerable? Parents ask me this because they expect themselves to be over the crisis of a high-risk birth. Because so much time has passed since their baby was discharged, because their child is so “objectively” healthy, parents start doubting their sanity when they feel a sudden rush of panic at the little things that typify any parent’s life. Scrapes and bruises, strep throat, chest congestion, and in my case an ophthalmologist using the term “galloping near-sightedness” to describe my son’s vision. When I heard that phrase, emotionally I was right back in the NICU.

The DSM identifies 4 criteria for PTSD. Criterion A is the gate-keeper. A person must be exposed to a traumatic event that (1) involved things like actual or threatened death and (2) caused intense fear, helplessness, or horror. I have had arguments with other researchers, who have questioned whether having a baby in a NICU qualifies as Criterion A event. Certainly, a NICU experience is not traumatic for all parents. I believe that it is traumatic for some, and it is an experience that no one ever wants to repeat.

The remaining 3 criteria of PTSD involve 3 symptom groups: (1) the traumatic event must be persistently re-experienced in at least 1 way, (2) there must be 3 or more symptoms of avoidance or numbing of responsiveness, and (3) there must be 2 or more hyper-arousal symptoms. We measure symptoms of Posttraumatic Stress using the PPQ, which was first published in Journal of Perinatology in 1996. I would like to show you some of the items of the PPQ, which really parallel the diagnostic criteria for PTSD. Feel free to use the PPQ in research or clinically. The complete PPQ is also listed on my web pate. The PPQ has also been used clinically to provide emotional support to high-risk parents. For example, the PPQ has been given routinely at the follow-through clinic at ST. Joseph’s hospital in Milwaukee. The follow-through clinic adds 1 question at the end, inquiring if the person answering the questions would like to talk with someone regarding these experiences.

These first items refer to unwanted re-experiencing, usually in the form of flashbacks and nightmares. And flashbacks can occur a long time after our babies are born. Let me tell you one of mine. It has now been 21 years and 89 days since my son, Chris, was discharged from the NICU. When he was hospitalized we had two cats at home, Ashley (about 8 years old) and Thudpucker (who was 5). They were our surrogate children, as Chris was our first and only child. Anyway, Ashley got very sick while Chris was hospitalized, and she became an intensive care cat. And there was this very nervous and compulsive father talking with veterinarians and Neonatologists and biochemists in 2 states about the prospects of bringing a premature baby home to a house with feline leukemia virus. Everybody agreed that it would not be contagious to bring Chris home, although I think I won the yearly award for the most off-the-wall question in the NICU. Some experimental treatments perked Ashely up for a while, so she was at home to greet Chris, 21 years and 89 days ago.

I buried Ashely in our back yard about 2 weeks later. I did not have the energy then for 1 more trip to the veterinarians, so I put Ashley to sleep myself when she seemed near death using a plastic garbage bag and ether I borrowed from the rat lab at school. That was a big mistake because Ashley did not go gently into the night, so much strength in a near dead cat. I would never do that again, but then I wasn’t very sane back then.

This story is a background to the fact that 10 years and 66 days ago, I buried Thudpucker next to Ashley in the back yard. And all the memory and the fear of the NICU return. No sensible psychologist would expect otherwise. But I am very

lucky, you see. Not only do I have a son standing there who is very sad, but alive and healthy. I also know that it is normal to feel the terror occasionally, so it doesn’t blow me away or make me think that I need to be institutionalized. And we could also use the old fears and sadness to help us put this death into perspective while we grieved. After we held our services for Thudpucker, we talked about Ashley and Thudpucker, how they got along, and about Chris’ coming home from the NICU. Lauren talked about the time Thud gobbled down her birthday dinner (a lobster tail) while we weren’t looking. And Chris (laughing and crying at the same time) said that Thudpucker taught us to grab our lobster while we can. It was an intimate family moment that I will remember forever.

The next 2 slides show some items related to avoidance and numbing of responsiveness. And finally here are some items that contain symptoms of hyper-arousal.

The next slides show that the PPQ has good reliability for a questionnaire and our validity data are what you would expect.

In 4 separate research studies high-risk mothers have endorsed more items on the PPQ (averages range from 6.2 to 7.7, SD = 3.5) than have mothers, who have only delivered only healthy, full term infants (averages range from 1.8 to 2.9, SD = 2.3).

Construct validity studies also show that the PPQ is correlated with other well-validated measures of PTSD. For Example, Quinnell and Hynan, 1999, found that the PPQ correlated significantly with both the Impact of Events Scale (r = .78) and the Penn Inventory (r = .50). Using a separate sample, Callahan and Hynan also found that the PPQ correlated with the IES (r = .61) and the Beck Depression Inventory (r = .58). The PPQ does not correlate with the divergent scales used in these studies, the Need for Cognition scale and the Openness scale of the NEO-Personality Inventory.

In DeMier et al., 1996 not one of the 50 mothers of healthy, full term infants had sought formal psychotherapy or counseling for their childbirth experiences. We divided the group of high-risk mothers into 2 subgroups, based on their pattern of PPQ scores. The first group had answered “Yes” to a pattern of answers on the PPQ that would have qualified for a diagnosis of PTSD, if such questions had been asked in a diagnostic interview. This required a minimum of six “Yes” responses distributed according to diagnostic criteria. The second group of mothers would not have met such a diagnostic criteria, but did answer 4 or more questions, “Yes”. 33% of the first group of mothers and 18% of the second sub-group reported seeking formal psychotherapy because of their perinatal experiences.

Research on PTSD is very clear that people exposed to the most severe stressors are most at risk to develop symptoms of PTSD. Thus we expected that PPQ scores should correlate with perinatal events that we considered stressful. In our attempt to identify risk factors for psychological distress after the NICU, we started with 6 presumed measures of stress, which we call perinatal stressors. These were the infants’ gestational age, birth weight, Apgar scores at 1 and 5 min., the length of the infant’s hospitalization in the NICU, and a measure of the severity of the infant’s postnatal complications. We knew that these measures were highly inter-correlated, and we first used exploratory factor analyses to attempt to determine if these 6 perinatal stressors represented 1 or more fundamental dimensions.

Our exploratory work utilized data gathered from chart reviews of 189 premature births at Methodist Hospital in Indianapolis, IN with the assistance of Dr. Howard Harris. The first exploratory factor analysis indicated that the 6 perinatal stressors could be well represented by 3 factors, which accounted for 75.3% of the variance of the six measures. As you can see the 3 factors were labeled INFANT MATURITY, APGAR SCORES, AND COMPLICATION.

In DeMier et al., 2000 we used confirmatory factor analyses to determine whether the three factor model of perinatal stressors would be present in an additional sample of 165 records of pre-term births obtained from Arnold Palmer hospital in Orlando, FL. with the assistance of Dr. Bob Manniello. Statistics involved a number of different fit indices, which indicated that the model fit the data very well.

In a second study reported in DeMier et al., 2000 we evaluated how well our measurement model would predict reports of PTSD symptoms in a new sample of

mothers of both high-risk infants and healthy, term infants. Our third data set consisted of answers to a self-report questionnaire completed by 189 mothers. Each questionnaire asked the mother to report the six measures of perinatal stressors for the birth of one of her children along with her emotional reactions during the following 6 months on the PPQ.

In evaluating how well our measurement model of perinatal stressors would predict symptoms of PTSD in mothers, we decided to modify the model by deleting the Apgar scores and the Apgar factor. We did this because of missing data. Only 109 of 189 mothers remembered their baby’s Apgar scores. Dropping the Apgar measures allowed us to evaluate the predictability of the revised model using the full sample of 189 mothers. In order to determine whether responses to the PTSD questionnaire were related to the two remaining stress factors, the PTSD questionnaire was added to the model as a fifth measure with hypothesized links to the two factors. That is, we hypothesized that the PTSD questionnaire would load on both factors in the model

This model also fit the data well. Additional analyses indicated that reports of PTSD symptoms were significantly related to both the Infant Maturity factor (standardized regression coefficient = .21) and the Complications Factor (standardized regression coefficient = .40). On this overhead 33% of the variance (1-.82²) in PTSD reports were accounted for by these two factors. We believe that the results of Study 2 are especially noteworthy because our modified model of perinatal stressors had predictive utility when applied to a sample that was different from the samples from which the model was generated. Indeed, the model was generated from chart reviews of premature births, yet the model was able to predict a sizable percentage of the variance of PTSD symptoms in a sample combining mothers of healthy babies, premature babies, and term babies hospitalized in an NICU.

Also, as we were mining around in our intercorrelation tables we found the following, which should surprise no one. “Older” pregnancies are at high risk for both physical and emotional complications.

Over the past decade there have been additional reports in the quantitative research documenting significant parental emotional distress—something that parents have known about and written about for much more than a decade. For example, Affleck, Tennen, & Rowe (1991) interviewed 114 mothers of premature infants 6 mo. and 18 months after their baby’s birth. Most of these mothers described, “an almost constant fear that their baby could die at any moment.” These mothers also reported painful, intrusive, and involuntary memories of childbirth and their infant’s hospitalization, and a determined avoidance of these painful reminders. In addition, Gennaro (1988) reported that mothers of premature infants had elevated levels of depression and anxiety when compared with mothers of healthy term infants. Two more research teams, Thompson et al. (1993, 1994) and Meyer et al. (1995) have used an instrument known as the Symptom Checklist-90 to measure the severity of emotional distress in mothers of high-risk babies.

The Symptom Checklist-90 is a frequently used measure of 9 categories of symptoms of psychopathology. The norms can be used to identify what is known

as “caseness”. Qualifying for “caseness” essentially means that a person’s score falls into an emotional “dysfunctional” distribution. Meyer et al (1995) reported that 28% of mothers of high-risk infants reported this clinical level of psychological distress an average of 2 weeks after their baby was hospitalized in the NICU. “Caseness” in the Thompson et al. (1993) report was 48% just after birth, 33% at 3 to 5 weeks postpartum, and 41% at 6 months corrected age. I believe that the occurrence of psychological distress in mothers of high-risk infants has been well documented, both quantitatively and qualitatively.

In JAMA, Singer et al. (1999) compared reports of psychological distress in a group of mothers of healthy, term infants with 2 groups of mothers of VLBW infants. The high-risk VLBW group had BPD; the low risk group did not. At 1 mo after birth, both groups of mothers of high-risk infants reported greater psychological distress than mothers of term infants. At 2 years after birth, mothers of low-risk infants were not different from mothers of term infants. Mothers of babies with BPD continued to have significant psychological distress at 2 years, however, and more severe family stress.

In summary, having a high-risk baby puts a mother (and hence a family) at risk for not only PTSD, but depression, anxiety, and general emotional distress. Now I would like to make some links. First, what do we know about maternal depression and infant development. The news is not good. And most of the information we have comes from full-term babies.

Research conducted by Tiffany Field (and others) has identified many infant correlates of maternal depression. One finding of interest to me (Field et al., 1995, Developmental Psychology, 31, 358-363) revealed a pattern of EEG activity in 3-6 mo. old infants of depressed mothers that is similar to a pattern found in depressed adults, socially withdrawn pre-school children, and infants with temperamental patterns of fear and inhibition. This pattern involves relatively more EEG activation in the R. frontal area compared with the L. frontal area. Left frontal activation has been associated with the expression of emotions regarding approach: Right frontal activation has been associated with the positive expression of emotions regarding withdrawal. This asymmetry is often associated with hypo activity in the Left (or approach) area.

Recently Lundy et al, 1999, Infant Behavior and Development, 21, 119-129; reported on samples of depressed and non-depressed women in the third trimester of pregnancy. The depressed women had elevated prenatal norepinephrine and cortisol levels and reduced dopamine levels compared to the non-depressed women. Not surprising, given what we know from research on neurotransmitters and depression. Interestingly, the infant data, obtained from urine samples within 24. hrs of giving birth mirrored the mothers’ data. Elevated cortisol and norepinephrine and reduced dopamine in the infants of depressed mothers compared to the control infants. There were no differences between the 2 groups on birth measures such as birth weight, Apgars, obstetric complications, or postnatal complications. Brazelton assessments conducted within the first week showed the infants of mothers with prenatal depression had 1) lower orientation scores, 2) more abnormal reflexes, 3) and less optimal scores on the excitability and withdrawal dimensions..

Field also reported that at 1 year of age infants of depressed mothers scored lower on the Bailey Scales of Infant Development, if their mother had remained depressed during the first 6 mo. after birth (Development and Psychopathology, 4, 49-66). Infants of mothers that recovered from depression during the first 6 mo. did not show the cognitive and motor delays. Many other research studies show a pattern of correlation between emotional distress in parents and less than desirable infant and child development. Unfortunate cycles can develop for families.

Our own research has examined the relationship between maternal reports of posttraumatic stress symptoms at 6 mo. corrected age and later cognitive development. Maternal PPQ scores at 6 months accounted for a small, 5.7%, but significant amount of the variance in infant Bailey scores at 30 months of age. The greater the maternal distress, the lower the Bailey scores. Unfortunate cycles can develop for families.

Let’s break the cycle and break it early. Fortunately, there are programs available to help break the cycle. I would like to mention two of them. The first is the REST Regimen, designed as a nursing intervention for infant irritability, aka colic. The REST Regimen has been shown to reduce the duration of infant colic by 2-4 weeks. Parents are provided support, reassurance, information, and specific techniques to utilize with their infants. Clinical trials are evaluating the effects of the REST Regimen.

Guided Participation is derived from social-cultural theory of education in everyday contexts. It operates through the ongoing relationship of a person more experienced in the care of very low birth weight infants (a clinician or team of clinician) with a less experienced person (the high-risk parent). Guided Participation practice concerns the development of competencies in care giving activities. It involves discussion of issues of care, the structuring of goals, problem solving, and acquiring responsibilities. Recently completed clinical trials have shown advantages in Guided Participation for both mother-infant interaction and infant growth and health. If you are not familiar with the REST Regimen or Guided Participation (or similar programs that I may not know about), I suggest that you look into them. Let’s break the cycle and break it early.

Now, let’s move on to part 2. Suggestions on how to help high-risk parents cope with their emotional upheavals. Often high-risk parents put up unfortunate barriers because we often believe that no one can help us unless they’ve been a high-risk parent themselves, or had experiences similar to ours. And we cut ourselves off from emotional help. One way that you can try to cut through that barrier is to realize some of the common feelings we have that we don’t expect you know about.

That sometimes it takes a great act of courage to just get out of the car in the parking lot and walk into the hospital to visit our baby. Because I don’t have a cell-phone and something bad might have happened on the way over. That we worry when we visit that we won’t find our baby in the isolette where we expect him or her to be. Tell us that even if our baby is not there some day, it does not mean the worst. That it may just mean that you haven’t had time to tell us about the move before we visit. That you know that when our baby is hospitalized, the ringing of the phone at home can sometimes cause the worst feelings of panic, even though we know they are unrealistic. Please acknowledge to us that you recognize that we are having a confusing turmoil of feelings that are the worst we could ever imagine, and that you are not afraid of our feelings. As Janice Fialka has said, “PLEASE DON’T DENY OUR DESPAIR, JUST BE THERE WITH US. IF YOU CAN’T GIVE ME BACK MY DREAM, HELP ME THROUGH THIS NIGHTMARE.” Tell us that you know that we are having a NORMAL reaction to incredible stress.

Next, I would like to ask you to help us in our bargains; even if it is just by knowing that we are making silent bargains all the time. Being a high-risk parent is facing a series of bargains, bargains that seldom come out even, bargains that we often lose. Bargains like, OK, I’ll give up my dream of what giving birth to a beautiful baby should have been like; as long as my baby can be healthy and come home at term. Or, “ Ok, doctor, I’ll accept the ventilator as long as it will help my baby get better and she doesn’t go blind. I’ll accept blindness as long as she can walk, and talk. Or I’ll accept Cerebral Palsy as long as he can just smile.////// Adjustment for the high-risk parent means making unacceptable losses acceptable, and adjustment is never complete. But giving up lost dreams and accepting what we do have is simply necessary, if we’re going to resume living our lives as a family with any joy.

I remember a father telling a story of how he felt when he learned through a phone call at work that he had lost another bargain, that his child had ROP and would be visually impaired. He rushed into his boss and breathlessly told him that he had to leave for the hospital. He hoped his boss wouldn’t ask why, but the boss did. All this father could do was break down and sobbing he said,///// “They’ve been taking all the pieces away, bit by bit, and they’re aren’t any pieces left.”///// Well, even though this father felt like he had lost his control and his sanity (and he was afraid that his boss thought the same thing) I can’t think of anything more normal for him to do. Blindness was one more bitter pill for him to swallow, and swallow it he did; very slowly and with much regret. To refuse the pill would have meant a life of anger, lawsuits, doctor shopping for a miracle, and little joy. Swallowing the pill meant accepting his daughter and her life. To be sure regret and sadness keep coming back to him.//// But acceptance meant that these lousy feelings could then be accompanied by joy and a love of his daughter for who she is.

You can help us a great deal with our anger. In my previous life as a clinical psychologist I studied the causes and control of anger and aggression in mice, hooded and albino rats, Carnieux pigeons, and college students. What are the causes of anger and aggression. Frustration, Suffering, and Pain. What do high-risk parents feel; frustration, suffering, and pain. Yes, high-risk parents are going to be angry.

It is a fact, in my opinion, that during an extended hospitalization someone on the medical staff is going to make a mistake. It may be a slight oversight, or it may be an horrendous, life-threatening error. And than the mistake meets the angry parent. What do you think happened when, without my informed consent, Christopher was run in a research study recording the evoked potentials in his occipital lobe, and then the research team billed our insurance company for the privilege of his being in the study. Was I happy?

What do you think happened when a resident decided to impress the Chief Neonatologist in front of my wife, Lauren, and me. Christopher had been doing beautifully for the last two weeks, and the staff had been full of confidence—telling us that he would come home as a normal baby, and because of that Lauren and I had trust and hope and were beginning to cope OK.//Then the resident says to the Neonatologist that she is going to order a sweat test because of a large meconium plug when he was born. I ask, “What’s a sweat test.” And she is impressive enough to tell me all about the meconium plug syndrome and its relationship to disorders of metabolism, chronic pulmonary infections, possible biliary cirrhosis, cystic fibrosis, and salty skin. And suddenly I’m incapable of listening anymore. I’m terrorized, I’m angry, I feel misled, and I don’t trust anyone in the NICU anymore.

I think that the medical staff can do wonderful things to help angry parents, even though I know that angry parents are one of the most troublesome things for you. It is natural for you to want to avoid angry parents, but please stay with us. When we erupt and explode don’t go away, even though you have pressing obligations. Stay there, nod your heads, and let our anger blow past you like the desert winds. Then, in the next day or two, when you sense that we might be more rational, come back to us and re-establish communications. Go over what we were mad about, and show us that you believe that our feelings are important to you. This is crucial.///Many time trust is the only good feeling a parent has. If that trust ever disappears, then that is the worst crash on the roller coaster for parents.

On that hot, August day when I learned about the Sweat Test, the chief neonatologist, Dr. Grauz, kept his eye on us. As Lauren and I were ready to leave, he approached us at the elevator and asked if we would like to talk. We sat in a very hot, Midwest humid, room for an hour and a half while Dr. Grauz apologized for the resident, explained how extremely unlikely Cystic Fibrosis was for Chris, and re-gained our trust. He saved our emotional lives that Saturday.

I enjoyed preparing this talk for you because most of you have dedicated your lives to giving mothers and fathers greater competence in our parenting abilities. In the first few days in the NICU, we parents are completely incompetent. Lack of competence and confidence can make high-risk parents jealous of the medical staff, a barrier to communication. An incubator that is foreign to me separates me from my baby. When I do touch my baby, I feel clumsy. Most of the time my baby gets attention from others, whose movements are smooth and assured. I’m only around my baby for a few hours a day. How will my baby know I’m its father? How can I compete with nurses and doctors? Jealousy is feeling incompetent about being a parent and envying others who are doing a better job of baby care.

There are few things that can help jealousy. First, mothers should be told that research has shown that babies learn to recognize their mother’s voices while their babies are still in the womb. So a premature baby knows its mother, and can tell mom apart from the nurses and doctors. Realizing this can be reassuring for preemie parents. Parents can also be led to realize that they can be the only ones in their baby’s life who do not cause pain. It is common knowledge that the lives of premature babies are filled with pain. Babies have many aversive encounters with doctors and nurses each day. But parents generally don’t draw blood or put in IVs. Parents can learn to match a soothing voice with a touch that is always gentle. Tell parents, “Your baby is learning that you are the good guys. You bring comfort. You’re unique. You are parents.”

I would also ask that you never lose enthusiasm about teaching us the developmental care of our infants. Teach us about our baby’s states; when to engage, when to stop, when to give comfort. The more we learn about our baby’s needs and how we can meet those needs; the less incompetent we will feel, the more confidence we will gain as parents. This is a confidence we will desperately need when you say, “Good bye.” to us as a family.

I ask you to help us when we do silly or dumb things because we are so stressed out. I benefited greatly from a very patient, kind neonatologist, John Glaspey, who was in attendance when my son was born. I wasn’t there at the delivery. Lauren had advancing pre-eclampsia, and Christopher’s heart rate was dropping. I sat shaking in Lauren’s hospital room expecting that C-sections took 45 minutes or so. When John Glaspey walked into that room and told me I had a fine son, I stood up and almost fell down. He gently took my arm and walked me to the nursery to see my son, and told me, wonder of wonders, that I could scrub up and touch my son. He walked me into the scrub room and held out a gown for me. I immediately thought I was in a clothing store trying on a suit coat as I turned around and tried to back into the gown. “Michael, he gently said, you put it on frontwards as walked around me and dressed me”. He then showed me how to scrub and then left the room until I was ready. What you all know is that I scrubbed myself raw for 5 minutes. But what you don’t know is that I had the idea that I was supposed to leave the suds on my hands so that I would not infect my son. I left the scrub room and Dr. Glaspey and three other physicians gently smiled as they saw this fool with 2 inches of orange syrupy lather ready to go in and touch his baby. John came over and gently said, “Michael, you need to rinse your hands off and then you need to dry them.” I needed all the understanding I could get then, and John Glaspey was right there for me.

Over the years I have come to the unfortunate conclusion that most hospitals that believe they are delivering family-centered care are only approximating it, and some hospitals miss by miles. And as a result, communication between professionals and parents suffers. I suspect that there will not be a major improvement in communication unless there is a major overhaul in the system, an overhaul that will not work unless it comes from the top down or from organizations like NPA, which has been an advocate of this agenda for years. Unfortunately, the trend over recent years is poorer communication as Neonatal care grows.

Let me give you an example from one of the more family centered NICUs in WI, to be unnamed. This neonatology group had invited me to present at a one-day conference, and I was invited to eat out the night before with some doctors and nurses from the unit, the other speakers, and the drug reps (who paid for it). I was sitting across the table from a well-respected neonatologist. He didn’t know that I knew that he had been primarily responsible for the care of a boy, who was born prematurely to a woman I know. The boy was to be discharged soon. In our conversation, I thanked him for the care he had given to the X baby and the family, using the family’s last name. In the moments of silence that followed, the look on his face told me that he did not recognize the name. It was not until I mentioned a very distinctive physical feature of the mother that he recognized whom I was talking about. He was somewhat embarrassed as he talked about one of the problems of Neonatology these days was that traveling from unit to unit, you couldn’t get to know your patients.

Thankfully, that was a far cry from my experience with Chris. At least there were only 2 Neonatologists primarily responsible for care, a primary nurse, and a primary resident. Any we also knew whom to talk to when each of these primary providers had a day off. I know that many parents have suffered from huge NICUs with multiple Neonatologists, fellows, residents, nurses, etc. From day to day, you don’t know who your doctor is. I don’t think that this will change without a major overhaul, an overhaul in philosophy and goals of treatment. I have a dream, one that I very much doubt will come true. The dream involves a change in perspective, one that perhaps some professionals may not like. One thing that would happen in my dream is that the term, “Neonatal Intensive Care Unit” would disappear. The goal of Perinatology would stop being “Getting the baby home in the best possible shape.” What used to be NICUs would become, “New Family Intensive Care Units”. The goal of Perinatology would become a goal I once heard Sheri Nance describe. Rather than getting the baby home in the best possible shape, the goal of Perinatology would become, “Getting the family home in the best possible shape.”

This would also mean that Perinatology would have to extend its reach beyond the hospital. I am excited about recent work occurring in WI and elsewhere that is emphasizing the transition process for parents from the NICU to the home and community of care. The WI Association for Perinatal Care has developed 2 booklets on Transitions, one for professionals and one for the families. Many of you visited our poster about “Baby Steps”, the booklet for parents. Funds from the Perinatal Foundation have made distribution of the booklets possible to all NICUs in WI. Most families discharged from NICUs go home with a free copy of “Baby Steps”. I have a short story that illuminates this great need for the coordination of care. It comes from e-mail on Preemie-l, the worldwide list server for parents of Preemies.

It comes from a mother giving an update on her 33-34 week preemie, who is now just over a year old. “We have been very bust with Neil. He’s been seeing a

developmental specialist once a week. We finally got hooked up with a speech pathologist to work on the feeding problems. In the past 3 weeks we have seen the local ped. gastroenterologist, pulmonologist, and neurologist. They want us to see a genetics specialist, too, and we’re trying to change our primary Ped to someone who can coordinate all this stuff. The developmental services nurse is trying to get coordinated with the doctors and get us in with a nutritionist, as well. I’m sure someone will think of something else tomorrow, but at the moment that’s where we are. So I feel like I am spending my entire life doing feedings, with breast pumping, bottle washing, and playing (alias PT, OT, ST) taking up the rest of the time that isn’t spent with doctor appointments or therapy sessions. Plus the joy of carrying Neil around the house attached to the 50 ft. O2 tube, and of lugging the portable tank when we go out. On the one hand, I am so happy to have such a wonderful baby (and a baby after all, after dealing with infertility), and one who has been so healthy and is pretty happy these days; on the other, I feel so dragged down by all of this, by the little things, the endless tasks, the dealing with doctors and therapists and so on, and by things like all the tears we go through with Neil over replacing the NG tube, re-taping that and the cannula, going through tests, meeting new doctors and therapists, etc. I wish he could have more fun and less pain, nuisance and aggravation. Last Sunday, we went to have a portrait done and decided to take out the NG tube and nasal cannula for the picture. IT was so odd---for a change, no one asked, “What’s wrong with the baby?” and there was his lovely fact without tubes and tape obscuring it. I thought how wonderful it must be to have a baby who’s not attached to anything, whose sweet fact is exposed all the time, and I wished we didn’t have

to put that stuff back on him.

I hope that those of you that had the winning bids on “Baby Steps” at the Silent Auction last night will show it to colleagues. It is the result of almost a decade of multi-disciplinary word. Mom and dad are encouraged to keep “Baby Steps” out and visible at home, and to bring it to all appointments. Each healthcare provider is encouraged to record a summary of findings and treatment in “Baby Steps”, so multiple caregivers visiting the home and outside the home will be informed of each other’s work.

Finally, I believe that the best way you can help high-risk parents is to do every thing you can to encourage the establishment and growth of parent support systems in your hospitals and communities. And best of all, do whatever you can to have a paid position for a Parent Support Coordinator for your unit, a position devoted totally to parent support. I am biased, obviously, but I don’t believe that you can consider yourself as providing even close to full family-centered care unless you have such a position. Those of you that had the time or inclination of following the United States Women’s soccer team over the last couple years, will remember the midfielder, Michelle Akers. She is the one with the lion’s mane of hair, running endlessly into exhaustion, repeatedly heading any threatening balls, defending her goal. I think of Michelle Akers as I would think of a high-risk parent, literally knocking herself out after banging her head countless times to ward off adversity. Never giving up, despite chronic fatigue. Soccer team physicians know the appropriate treatment after a game for Michelle Akers. IV fluids. Neonatology needs to recognize that parents are also in need of oxygen and emotional IVs in order to be able to continue the struggle. Parent Support Coordinators can be the IVs.

At last Spring’s NPA meeting in Alexandria, VA; about 20-25 of us went out to dinner at an 18^th century tavern. We occupied one room and were entertained by a man dressed as Ben Franklin look-alike, who told historical jokes relevant to current times. At one point he addressed the room saying, “You are probably curious about my natal history.” Little did he know about the natal histories of the people in that room. Very conservatively, the people in that room had cared for tens of thousands of neonates over their careers. I was also quite sure that most, maybe all of the people in that room, felt that caring for parents was also part of their profession. As I look around this room, you will have an impact on millions of families during your careers.

I have come to learn that working in a NICU involves a life of short meetings, separations, and endings. You do all that you can for our babies in crisis; and then that relationship ends either in death, transfer, or when you watch parents walk out the door with their babies. These are relationships that are intense and often brief. There must be occasional sadness in these endings. I suspect that the sadness may be more than occasional, but it comes with the territory. Watching a baby go home in the best possible shape is one of your goals. But you are reaching the limits of the technological advances of medicine in Neonatology. Most babies go home to families. I hope Perinatal professionals realize that they can do so much more for babies by helping parents gain confidence in the skills of mothering and fathering. The next great advances in Neonatology can come through focusing on the well-being of high-risk families and the transition process to the home and community. I believe that the greatest reward that you can have as a professional is knowing that you are sending mothers and fathers home in the best possible shape, with some confidence in their ability as parents. This is how you have already made your most lasting impact upon the baby, through the family; and I thank you deeply for that.