Professionals Helping Parents

I have never met anyone who planned to spend one minute of their lives gazing down at their own tiny baby, laying on a warming bed in an NICU. Expectant parents typically have other ideas for the day of their baby's birth and beyond. Families who have experienced a perinatal emergency know that it is like an earthquake, shaking the foundations of their best-laid plans. When the crisis happens, they find themselves flailing about, searching for some old familiar landmarks, some way to think or be that will magically light the way through the rubble. As professionals working with families in crisis, you can see the damage. You are on the front lines. And you have more than your share of jobs to do.

In the NICU, parents are facing a fragile newborn with an overwhelming array of needs. They are shocked. Terrified. They begin to grieve losses that they may not yet be able to put into words. They are filled with the intensity of their longings and the fear that they may never seem them realized. They feel helpless. The jobs that they typically prepare for seem somehow irrelevant and far, far in the distance. It's hard to imagine what to do, today, that will make the least bit of difference. The one job that is left for parents at the start of their journey is the job of vigilance. This job will continue for a lifetime, but it begins at the moment of risk to their baby.

As professionals on the front lines, you may feel helpless, yourselves. You are armed with medical technology and protocols of care. Over years of training and experience, you have become skilled at coping with the medical uncertainties that you confront daily. But the intensity of emotion that you face when you talk with a parent may leave you anxious and uncomfortable. I would like to explain in more detail what happens to the parents you see, the ways in which they struggle to cope, and how this process is reflected in your response to parents.

For parents, perinatal crisis increases their vulnerability; it interrupts the normal developmental twists and turns that they would normally go through in the process of creating a family. Having and raising a preterm baby pulls them out of the normative world of friends and family. Everything they knew to be true, all that they had learned about being parents no longer applies.

Parents want, more than anything, to be able to protect and care for their children. Facing the limits of our control is a shocking, terrifying experience. In the words of one father describing his son "crashing" in the NICU:

"So we stand back like tourists watching a mugging while they turn the lights up and dive on him...The doctors never look at his face... Later we're told we can hold him, but after the nurse finishes feeding another baby. Then a hideously young doctor flies by and bombs us with the word "pneumonia."

At each fork in the road of this journey, parents are shocked. They stop short, unable to move for a time. They look back at how things were, trying to figure out how to breathe this new air and walk on this unsteady ground. Nothing seems to help for long. So what you see in front of you are people who are completely confused and overwhelmed. Parents who seem unable to understand what you are telling them, are not incompetent to make decisions or unable to understand their child's condition; they are simply attempting to recover from an earthquake in their lives.

For example, when dealing with sudden bedrest, a mother is likely to hold on tight to her life as she knows it and resist the rapid shift in role, losses, and terrifying implications of bedrest. I vividly remember the day that my OB examined me first thing in the morning on a very busy day for me, (at 24-weeks pregnant with twins) and found me effaced and dilating. "I'll send you upstairs to Labor and Delivery to put you on the monitor." She said. Her nurse generously offered me a phone to call whomever I needed. She gently suggested that I could use it to cancel my appointments for the day. "Oh," I said innocently, "should I plan on being here all day?" I wish I could accurately describe the look on the nurse's face as she gently replied, "Well, yes..."

The first job a parent faces is to figure out how to stand upright again after being flattened. Over time, they must find a way to make sense of the world again. Your role as a professional in all of this is to watch over and nurture the parents' growing sense of competence, confidence and cohesion – recognize their intense desire to understand, to help, and to protect their child. I wish I could tell you that this happens in a smooth, predictable way; but this is not the way of development.

Depending on the medical and developmental course of the child, parents are likely to feel fragmented again and again – each time taking a deep breath and picking up the fragments that lay scattered around them. Each new piece of information, each new diagnosis poses a challenge for parents. This occurs even when the diagnosis is somewhat expected. Suspecting that their child may have CP and hearing a specialist tell them that their child has CP are dramatically different. Parents talk about walking around for months and years "waiting for the other shoe to drop." For some, each time they integrate their new reality into their old one, a new complication arises.

After a crisis in pregnancy, things will never be the same again. But that doesn't stop parents from hoping that with each new milestone, each new step in their journey, that things will again look the way they did before the world fell apart. I remember lying in bed, in the hospital, waiting. I fervently hoped that I would be lucky enough to wait a long, long time for my twins to be born. Each time my preterm labor intensified, I would think, "Is this it? Is it over?" And when my twins were finally born, my initial thought was, "Well, now it is over." But, of course, it was just beginning.

Not one to easily let go of my hopes, I continued to wait. I was not the picture of serenity. I continued to wait not so patiently for this to be over. I grasped at every way I could think of to make sense of what was happening to my family. But with each transition, and with every new challenge, I could feel the fear, mingled with hope and sadness, rise up inside me like a tidal wave and paralyze me.

As long as a parent can hold on to their familiar understanding of the outside world and their "old" self, they can temporarily avoid getting buried under the avalanche of emotion. But it doesn't take long for the full impact of the crisis to hit. And so parents are faced with an unenviable task – how to deal right now with a situation that just a minute ago was inconceivable. How can they make the jump? How can they go from being part of the "normal" world, to being the parents of a high-risk infant, or of a child who has just received a diagnosis with long-term implications? How in the world can they relate to other people? What do they do now?

I found myself getting angry that people actually lead "normal" lives. I was so wrapped up in our day-to-day crisis, that I felt cheated of all the things we were supposed to have. I'm not angry any longer, just sad that I'll never experience some of the most common experiences a parent expects.

As a professional, you naturally reach for a way to describe how you think parents are doing. One risk you face in doing so is to either see only parent's emotional disarray, or their growing competence. It's important to recognize and accept both of these states – they occur simultaneously. What parents need from you is to acknowledge that this is unbelievably difficult and at the same time, to behave in ways that demonstrate that you have confidence in their ability to ultimately find their way through. It's important to be aware of what is primary at the moment and not expect too much too soon. But remember that parents' reactions to this crisis don't reflect their overall capabilities. Parents need to know that you can see past the fragmentation – that you don't see them as totally incompetent when they are terrified, as hostile and undeserving of nurturing when they are angry, or helpless when they feel paralyzed.

The road that preemies and their parents travel is often rocky. When you're faced with a parent who is confused, angry, or anxious {or all of these together} it's tempting to avoid them, to blame them or to patronize them. These are strategies that you may employ in order to deal with your own feelings of helplessness, anxiety or frustration. Unfortunately, each of these tactics only reinforces the parent's deepest fear – that the realities that they face, and the feelings they are living with are truly intolerable. It confirms their conviction that they will not survive this. It also bolsters the deeply held 'secret' belief that they are harmful to (and, in fact, have already harmed) their children and are really only in the way of the competent people who are here to help.

Parents need you to respect the devastation that they are facing, but also to see past that to the capable parts – the parts that long for knowledge, influence, an ability to parent their child in any way they can. They watch and wait as they begin to reorient and learn what they can do for their child. Showing them what they can do is one of your most profound responsibilities. Remember the important job of vigilance. When parents seek an active role with their child, when they question you or ask for more information, they are not trying to usurp your role. They don't want your job. They are simply doing their job.

They need their strengths and capabilities, even if just newly emerging, to be mirrored – recognized, held, and nurtured. Parents need you to acknowledge that their longings for normalcy make sense. Along with this, parents need to know that they are not burdening their child with their hopes and dreams. Another mother described her feelings this way:

"The staff kept telling me not to have so many expectations of the babies, that they would tell me when they were "ready." I kept telling them that the word was not expectations, it was hopes. I wanted my babies to need nothing more than what a loving family could provide. I wanted them to be all right without all the medical hoopla. This seemed like a perfectly reasonable thing to wish for. Why were the rules different for us?"

One of the most profound and lasting gifts that you can give to a parent (and by proxy, to the babies you treat) is to seek out and nurture a parent's intense desire to know – encourage their longing to understand what is medically happening to their child and their wish to be able to do something to help. Genuinely welcome their desire to speak your language, and seek out their ideas, beliefs and input as active partners in the process of making decisions about their children. In doing so, you convey your confidence that their state of emotional disarray will not be permanent. That's the fear, of course, that the world has fallen to pieces – that they have fallen to pieces, and those pieces will be scattered to the winds.

Part of me wants to demand answers. Part of me wants to be patient . There, at three o'clock in the morning, all of me wants to be a fully trained neonatologist as I watch my wife hurl herself against the door of my son's room.

Parents need to know that you respect and understand their grief and anger and will not avoid them or blame them for it. Parents need you to find a way to deal with your own sadness and anxiety about the limitations that you face. They need you to find a way to cope with the anxiety that comes up when they realize that no matter how much they idealize medical technology and your specialized skills, you have no crystal ball and no magic wand. They need to know that you will not abandon them on their journey, no matter how sad, angry, anxious or bewildered they may feel along the way. They need you to join with them in their moments of fragmentation as well as in their moments of competence.

As a professional working with parents, you see parents acting in ways that can sometimes be confusing. They may challenge observations or recommendations that seem self-evident to you. They may question you, challenge you, or pull back in grief, shock or helplessness. The intensity of parents' response naturally may lead you to try to name what you see. This is how you, as a professional, cope with your anxiety. So labels get thrown around. "In Denial." "Withdrawn." "Hostile." "Needy." But this only distances you further from parents. This distance is not only detrimental to the child, but can also create growing conflict between parents and the medical team.

What is important to remember is that the drive to hold onto the world, as it was just a minute ago coexists with the intense desire to do everything possible for their child. The tendency to hold on reflects a parent's healthy desire to retain some sense of competence in the face of all that threatens to overwhelm us.

The doctor who saved his life spends half an hour with us on the blue cushions in the waiting room, where someone has washed the walls and righted the trash can. Never once does the doctor look at her watch. She's absolutely positive she does not know what happened [to the baby]. I say it was panic fueled by too little sedative, followed by an asthma attack. Maybe, maybe, she nods [we] I talk to her until our words run out.

Stay with parents on this journey. As colleagues, nurture and support each other so that you don't need to turn away in order to protect yourselves. Please do not underestimate the power of simply being with parents, even when you do not have the answer to an anxious question, or the solution to a painful problem. Remember always that vigilance is the one job that parents can always do for their children. It is not meant as a challenge to you, it simply comes with the territory of parenthood. Each of us has our job. Let's do them together.

Thank you to the parents whose quotes I borrowed from interviews and writings many of which will appear in the book, The Emotional Journey of Parenting Your Premature Baby: A Book of Hope and Healing (NICU Ink).

Having a preemie makes you feel as if you stepped through the looking glass. Just a moment ago, you were a fully functioning part of the world, an adult with the ability to relate to other adults as peers. Suddenly, the world doesn't look the same and you don't feel like an adult anymore.

As medical professionals, you are familiar with this world. You have a context for what you see. Parents have just been cut off from familiar landmarks and sent on this journey alone. Respect their understandable feeling of fragmentation, and simply be with them as they struggle to rebuild a universe that they can recognize. Even when there is not something concrete for you to do, your presence and focused attention bring strength and comfort.

"My husband held my hand through the entire surgery, as did some blessed medical student. I'll never forget her. She seemed so angelic to me. I shook uncontrollably from the drugs and started crying. She was so soothing. I held her hand just as tightly as I held my husbands." --Rebekah

Give families time to orient not just to the NICU (or other specialized setting), but also to each new bit of news that you give them. Be aware of your own preconceived notions of what parents "need to know" or what you imagine that they can deal with. Instead, listen carefully to what you are being asked. Answer what you can, and acknowledge the anxiety that comes with not knowing. What parents imagine may be far worse than reality. Remind yourself that information takes time to integrate so be patient and expect to repeat yourself. Soothe and support them in honest ways, not superficial ones.

"I was left with the much dreaded feeling that I was not being told all that was going on with me and with the babies. Dr. H talked to my husband and they felt that "sparing me" was best for me, when in reality, it left me feeling insecure and not able to trust anyone." --Sarah

Respect parents enough to allow them to feel all their jumbled emotions without running away or minimizing what they feel. Remember that it's very likely that these were competent, capable, bright and vigorous people prior to this crisis, rather than anxious, clingy, angry or vindictive people. Admire and support their growing skill, their confidence, their intuition, and their perceptions. Begin to rely on them as reliable sources of information about their children. By relying on them, their belief in themselves grows and becomes steadier. Look for the cohesive and competent parts of them and nurture those. Remember that this crisis can happen to anybody.

"We were allowed full access at all times to medical records. They trained us for emergencies and on her equipment. Medical interventions were, again, out of my control. However, as soon as I was able to begin dealing with the reality of having had a premature baby, my husband and I began taking back control by handling as much of her care as we were able to. I believe that helped all three of us." --Cindy

Teach parents a whole range of signals that they can notice and nurture as they bond to their baby. Teach parents how to touch, to soothe, and to connect with their baby. Demonstrate your confidence that they will not cause their child harm. Support them as they learn to tune in to their child and attend to their child's needs. Explain the power of attachment and assure them that they have a lifetime to nurture the bond between parent and child. Many parents consider this to be the most important, meaningful and long-lasting thing that you do.

"Frankly, I was terrified of picking her up--she was so tiny and weak. I was actually somewhat relieved that the doctors didn't want me to hold her at first. In just two days, though, the nurses told my husband and me about Kangaroo care. I held her frail body against my bare skin and slowly started to feel like yes, this was my child." --Rebekah

Remember that parents are ultimately the ones who will raise and nurture this child. Remind yourself of the bottom line here – and that is facilitating the creation and stabilization of families. Your job is to partner with them in their child's care; their job is to care for their child in whatever ways they can. Help parents find their way and figure out how to behave in this foreign and overwhelming situation. By supporting them in these ways, you are providing real support, not superficial support.

Remove obstacles preventing families of premature babies from finding comfort in the experiences of others. Do what you can to create an environment in which parents can talk and support one another. When parents of healthy full-term babies look around, they see endless numbers of peers who understand what they are seeing and feeling. Parents of preemies have no such peer group when they are kept isolated from one another. The comparisons that parents make, the discussions that they have are a normal part of acclimating to the specifics of preemie parenthood. Whether a family's preemie lives or dies, be aware of the support group and mental-health resources that are available in your area. Do not let these parents travel this road alone.

"Thank you. When I first read your questionnaire*, I cried. For hours. I did not know that the feelings you listed were felt by anyone else. I thought they were unique to me. How could I have known?" –Cindy

*These quotations were gathered during the course of interviews with parents of premature babies for the soon-to-be-published book, The Emotional Journey of Parenting Your Premature Baby: A Book of Hope and Healing (NICU Ink)