This Easter I was faced with the most challenging crisis of my life—the near loss of my second daughter shortly after her birth. The two weeks following her sudden admission to the Intensive Care Nursery (ICN), was spent in a haze, making daily trips to San Francisco to spend several hours with her, placing frequent phone calls to keep updated with her progress and spending restless nights worrying about how she was doing. Now that we have emerged from our fog of coping and struggling to make sense of what happened during this sudden unexpected medical crisis, we are extremely grateful for what we almost lost. It is likely that at an earlier time, even just a few years ago, or in a more rural hospital, Kristiina would not be with us here today. This Mother’s Day would have been spent with one live daughter and only a memory of the second. Consequently, I will celebrate Mother’s Day 2002 with a renewed sense of gratitude and appreciation of life, very thankful for both of my girls.

Preparing for the Worst, Hoping for the Best
For several reasons it is ironical that my second daughter experienced a medical crisis following her birth. My professional focus since completing my residency training has been on grief and loss issues hosting the Journey of Hearts^TM website, www.journeyofhearts.org and educating colleagues and the public about grief and loss. I recently wrote a retrospective look at how my life had been impacted in the past by crisis. Little did I know that I would be faced with the most challenging crisis to date. Despite extensive training and teaching in the field of grief and loss, I find it is always different when the loss or life-changing event hits home and becomes one you must live with and integrate into your own life—especially when it is a sudden and unexpected loss. Even though I intellectually knew what to expect, each reaction to loss is unique. This situation was very different than any other loss or crisis that I have faced in the past.

With my first daughter, I balanced the excitement of being pregnant with preparing myself mentally for problems that might arise while pregnant. In this case, too much knowledge about the medical aspects of pregnancy and potential delivery complications weighed heavily on my psyche. I had discussed with my husband what medical decisions he might need to make if I face complications after the baby arrived. We never anticipated that our children would be the ones facing medical problems especially an Intensive Care Unit (ICU) admission. The first time around, I had chosen names for the baby based on gender and different names if he/she died. Feeling superstitious I hesitated referring to Kaarina by name or telling too many people her chosen name until after she was born. This second time, I tried being more positive since everything had gone well with the first pregnancy. There was no reason to think things would not go well this time….

Listening to Intuition
Life has a strange way of working out. In hindsight one can often see that things happen or do not happen for the right reasons. Listening to my intuition, my gut instincts, has helped me gain invaluable insights and make important decisions professionally and personally. I find now the older I get the more I learn to trust my intuition and follow the inner feelings.

I was in my first trimester of this pregnancy when the September 11th 2001 tragedy occurred. A time that should have been filled with joy and celebration was overshadowed by fears of terrorists and concerns for our children. We were facing an uncertain future. When I discovered that the baby was due the week of Easter 2002, I believed it was a positive sign for life and the pregnancy since my daughter would be born at a time of renewal and rebirth. Her birth would be an indication that life goes on despite tragedy,

My husband Cole and I had been planning to move to a more rural community for several months and were house hunting the weekend of September 8, 2002. We decided to put in a bid on a house, but the September 11th events caused us to quickly re-evaluate the priorities for our family. This unexpected tragedy reminded us that life is so fragile and so precious. Suddenly the goals, plans, purchases that had seemed so important the week prior were trivial by comparison. We stopped our bid to buy a house.

We made the decision to focus on the pregnancy and the baby and do what we could to ensure the baby be save and healthy on her arrival. I opted for working on a limited part-time basis. Even though friends thought I was crazy planning for the worst, we decided to stay in the Bay Area where the baby would be delivered in a level three nursery with an NICU potential nearby, "just in case." We never imagined that we would be relying upon these services.

About a month before her delivery, I dreamt that I was reviewing her tests with a radiologist. He told be, in a rather monotonous, unsympathetic tone that most children with her condition die if it doesn’t correct. I woke feeling uneasy about the dream and had convinced myself that it was leftover "stuff" from my medical school and residency experiences. However, I did make my husband promise that if something went wrong with the baby, he would tell her doctors about my dream and have them look at her heart and circulation. It turned out that my dream was pretty close to the reality of the delivery. Knowing her diagnosis now, listening to the dream, my intuition at work, couldn’t have prevented anything from happening.

The Details
Our daughter Kristiina Anna Mia Thompson was born 3/ 29/02 via an elective C-section. She was 9 lbs. 13 oz. 21 1/4 in at birth. Within hours of her birth, she went into respiratory distress and was moved from the newborn nursery into the Neonatal Intensive Care Unit and put on supplemental oxygen. Still less than 24 hours old she was unable to sustain her oxygen levels and required intubatation and a respirator to support her lungs. By the following day, early Easter Morning, she was transferred to a tertiary care Intensive Care Nursery where there would be more treatment options to manage her condition.

Her diagnosis was Persistent Fetal Circulation leading to Persistent Pulmonary Hypertension of the Newborn (PPHN). For some reason, the signal required at birth to switch from fetal circulation to adult circulation did not occur. The precipitating etiology was unclear and never determined. The treatment was mechanical ventilation with high level oxygen to support her lungs and sustain her blood oxygen levels. Kristiina demonstrated some, but not all, of the signs and symptoms of PPHN making us wonder if she truly had the disorder, or the neonatologists caught it early enough so that the condition never fully manifested. Still because of the PPHN condition, Kristiina became agitated during the first few days when handled or touched. Much of the treatment once she was intubated and on the ventilator was watchful waiting without touching her, allowing her body the time it needed to heal. This was very difficult to do both as a physician and as a mother.

Being the Physician
Perhaps because physicians are so used to being in control, we often do not know what to do or when faced wit events or diagnoses that are beyond our control. In this situation I had to turn over complete control of her case to the neonatology team and consequently experienced feelings of complete helplessness. The inability to do anything, to contribute to my daughter’s care medically as a physician or emotionally to hold her hand and pacify her as a mother was indescribably frustrating. How was I supposed to "turn off" my years of training as a physician—being in the hospital, caring for patients and providing them comfort during a tormenting time? It was impossible.

It was also challenging taking a "crash course" in neonatal medicine and trying to find resources—medical and other—to get up to speed with how newborns are currently treated in the Neonatal Intensive Care. Part of the reason for selecting adult medicine as my specialty was the fear of managing and treating infants younger than two months. Now all of a sudden, my daughter was one of those babies. I was forced to confront and quickly overcome these fears.

I don’t know if it is possible, nor should it be desirable, having spent so much time in hospitals and practicing medicine to be able to flip an internal switch and suddenly "turn off" being a physician and just be a mother. Yet in this case I was unable to care for my own newborn daughter either as a physician or as mom. After I had identified myself to a NICU nurse as "Dr. Dyer," I was stunned and quite offended when she said to me "Here you aren’t Dr. Dyer. You are just ‘Mom.’" I identity myself in person and on the phone as "Dr. Dyer" not as "Mrs. Thompson." Being a physician is an central part of who I am. I felt her team demoted me to just being "Mom."

Being "just" the Mother
It was difficult, as a mother having to turn over full care of my child over to others, out of necessity from the situation. With my first daughter, I had been reluctant to let anyone else care for her other than family. From the beginning, I didn’t have a choice with Kristiina’s care. She was whisked into the NICU while I was in the recovery room. The pediatrician was making the necessary emergent decisions for her medical treatment. Still confined to my bed awaiting the effects of the spinal anesthesia to wear off, I had to ask the nurses to get the pediatrician to come to my room and tell me what had happened to my daughter. In his defense, he had been keeping my husband, a non-physician updated, but Cole hadn’t conveyed the gravity of the situation to me.

My experience as a NICU Mom with my daughter was very different from my experiences as the physician in dealing with adult ICU patients. With adults we were often in touch with the family about potential changes in the treatment plan. Especially in the beginning with my daughter, I was discovering or being informed after the fact that a change had been made in her plan e.g. intubation, the need for pressers—medication to keep her blood pressure elevated and continuous pain medication. During the first few days I  became somewhat hesitant about visiting the NICU fearing what changes I would find each time. I felt as a family member that the communication could have been much better.

At the start we were extremely grateful for the round-the-clock care that the physicians and nurses were providing her. Yet as the days became weeks, she required daily laboratory draws almost daily restarting of her IV lines. I found it was a struggle not to get mad or irritated with the team for doing their job, ordering all of the tests, poking and prodding. I was beginning to think that her hypertension was a stress response to the ICN which might resolve once she was out of the hospital.

As her mother, in many ways, it was almost easier watching her during the first week when Kristiina was sleeping, intubated and receiving pain medications. I could tell her to keep sleeping and use her strength to get healthy. Once she was off the ventilator and needed to wake up, it was difficult imagining her waking up into a world that was full of pain. We reassured her that although it was scary waking up, that she needed to be strong and get through this difficult period. She would soon discover that everything doesn’t hurt, that everyone isn’t trying to hurt you and that life will get better. We wanted to provide her with comfort and strength during the few hours we were visiting each day, hoping that our presence would make things better overall and she would not feel worse during the time we couldn’t be with her.

One of the challenges we faced was trying to balance the needs of two children—a hospitalized newborn and an active two-year-old—without feeling guilty for slighting either one of them. We recognized that we couldn’t spend 24 hours with either of them, so had to do the best that we could by both of our girls—spending what time we could in the ICN with Kristiina letting her hear familiar voices and sensing our presence, and reading stories, drawing pictures or building sand castles with Kaarina. I found the most difficult part of being a NICU/ICN parent was remaining patient, focusing on the positive rather than allowing yourself to think about the negative and finding something, anything you could do to help.

Grieving Our Losses
Since we had a good outcome, many might believe there was nothing we "lost" in this crisis so there was nothing to grieve. Technically, we did not "lose" our daughter. She was discharged to home two weeks after her birth with little more than residual high blood pressure, but there were many loses during the two weeks she spent in the hospital. We lost our vision of having a happy and healthy baby at home for the first two weeks of her life. We lost the chance to completely bond with her during the first few days of her life—to hold her, change her first diaper and nurse her. This is something that can never be returned. These "firsts" that so many take for granted had to be postponed for us. These were our loss, our experience, our daughter’s life path; it was a situation we could not walk away from.

Much of this two week period was surreal. I never had a "normal" discharge from the hospital—being wheeled out with a newborn in your arms to a happily awaiting family—and going home. Instead I left the hospital where I delivered with an anxious two-year-old in my lap and drove an hour to meet up with the baby and my husband at the hospital where she had been transferred.  I remember walking around at a grocery store knowing that I had recently given birth physically because I was no longer pregnant, but not feeling like it was real emotionally because I wasn’t carrying around a baby. During this two week ordeal, I found myself wistfully watching other moms leaving the hospital, shopping in stores or walking in playgrounds with babies in their arms and wishing I was in their place. Since this experience, I now view expectant mothers in a different perspective and greet them with the wish for an "uneventful delivery."

Even thought I’d had extensive training in the fields of grief and loss and intellectually knew what to expect, this situation was different than any of the my prior losses. This time I was "Mom." It was also the first major loss for my husband. Dealing with the strong emotional reactions that ensue from being a NICU parent is an integral part of coping with the experience yet, something that wasn’t being addressed by the physicians, nurses or the social workers. We still had to cope with many intense emotions—Terror, Numbing, Grief, Guilt, Helpless and Anger—and keep it together for our two-year-old daughter. We discussed the experience a few weeks later and decided it would have been helpful to have had some of the literature I eventually found discussing the normal, anticipated emotions that parents face in dealing with a sick newborn in the Intensive Care Nursery. In my post-hospitalization research I discovered that parents who experience a sudden medical emergency in a child, such as having an infant in the NICN/ICN, are at an increased risk for developing Post Traumatic Stress Disorder. Yet it did not seem to me that anyone—physicians, nurses or social workers—was helping us maximize our coping strategies. If anyone was offering help, I was too dazed to notice.

Becoming Empowered Parents
Initially the ordeal was especially frustrating because there seemed to be so little we could actually do, further magnifying feeling helpless. In becoming an empowered parent and "do something" I looked for articles and information that would educate us (quickly) about what was happening to our daughter and for additional modalities that could be integrated into her treatment. These modalities included prayers and blessings, music, womb heart sounds and Reiki (healing touch). In utilizing an integrative medicine approach we hoped to bolster her inherent strength and inner healing abilities recognizing what Hippocrates said that

I pride myself on being an experienced e-researcher—able to find most anything on the Internet within a few minutes to hours at the most. In this case it took the better part of a month surfing the Internet to find resources. I was looking for information written specifically for parents with sick infants and stories for siblings that explained the baby was sick and in the hospital, but would be coming home. Asking the social workers at both hospitals proved to be ineffective. I found medical articles on PPNH much more easily than finding resources for coping with having a newborn in the Intensive Care Nursery. Most of the existing resources I discovered were for premature infants, or children with congenital heart defects, not for term infants who get sick. Almost all of the stories for siblings were written to help them cope with the death of a baby or having a premature baby, not "just" a sick newborn.

After a few days in the ICN, Kristiina developed high blood pressure which may have partially been related to the noise and activity in the ICN room, and being poked and prodded. She would be startled awake or not allowed to sleep. To help block the constant background activity, we brought in a bear that played womb heart sounds and a CD player with lullaby nature music and gave her something more pleasant to listen to than the unit noises. We encouraged the nurses to use the calming nature sounds to soothe her, especially when we weren’t around.

In addition to the music and sound modalities, I had taken some training in Reiki, (therapeutic or healing touch), and used this technique to calm her, even when she was unable to be touched. I was grateful for the training that allowed me to "do something." Kristiina was able to sense my presence and I focused on adding positive healing energy to aid her recuperative process.

Within days following her birth, thanks to the Internet, we were able to quickly contact friends and family to notify them of what had happened. On Easter, Kristiina was included on several prayer lists and circles—two days after her birth. Professionally, I have long had the belief that there is a healing power in holding a person in one’s thoughts—whether through saying prayers or blessings or lighting candles. Via phone calls and e-mail messages we tapped into the healing powers to create a circle of positive thoughts and energies from people around the world. to hold Kristiina in their thoughts and prayers to mentally aid in her healing process. I truly believe that having so many people hold Kristiina in their thoughts and prayers, mentally aided in her healing process. The Circle of Healing helped keep her safe and protected until she was strong and recuperated.

Trying to Answer "Why?"
Perhaps the most difficult part of this ordeal was never finding an answer to the question "Why?" either medically or cosmically. I know that it is human nature to want to answer the question "Why?" yet at times it may be difficult, if not impossible, to find an answer. One might even deliberate whether we should be questioning what events occur in our life.

Medicine, as a profession, is faced with so many unanswerable "Why’s?" I have had to accept with many patients that many times we cannot find an answer to this question. When faced with the unanswerable "Why" in the past, I have found the thoughts of Rabbi Earl Grollman to be helpful in coping with this difficult question. These thoughts have been slightly modified to reflect this situation:

"Why must life be one of sorrow?" "Why?" There are no pat answers. No one completely understands the mysteries of life. Even if the question were answered, would your pain be eased?

There is no satisfactory response for an unresolvable dilemma. Not all questions have complete answers. Unanswered "Why's" are part of life. The search may continue, but the real question might be "How [do I] pick up the pieces and go on living as meaningful as possible?"

Cole and I purposefully did not spent much time dwelling on the "Why?" especially when it became apparent that there would be no definitive medical answer. Instead we chose to focus on "How do we go on living as meaningful a life as possible, now that our life has been forever changed?" We have come to realize that asking "Why" may be disruptive and counterproductive. Letting go of the "Why’s" can be extremely beneficial to the integrating the loss into our lives and restoring peace after a crisis.