No one is as capable of gratitude
as one who has emerged from the kingdom of night.

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.

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 intubation 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 with events or diagnoses that are beyond our control. In this situation I had to turnover 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 identify myself in person and on the phone as "Dr. Dyer", not as "Mrs. Thompson."Being a physician is a 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 turnover 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.

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 searched the Internet 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

Nature cures—not the physician.

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.

Learning from Crisis
In hindsight, I realized that I learned much and dare I say it grew and evolved as a result of this crisis both professionally and personally.

Professionally

• Physicians and other healthcare professionals can gain invaluable insights and improve their empathetic skills from switching roles and becoming a family member. We can learn so much about communication, patient’s feelings and interacting with family from being on the patient’s side of the diagnosis and treatment plan and seeing things through their eyes.
• It is important for physicians, nurses and other members of the team to talk with the families, keep them informed of what is happening as it is happening, and being available to answer questions, particularly when dealing with life-threatening conditions. I felt as a family member that at many times the communication could have been better.
• In communicating with the patient and family, especially in emergency and critical care situations, words should be carefully selected, remembering that the family may scrutinize every word—looking for hope and hidden meanings. I discovered just how much families can hang on every word spoken by physicians and nurses, every change in treatment, every little response by the child. Even subtle nuances, body language and unspoken expressions were subject to careful scrutiny and interpretation.
• The emotions involved with the grief response are magnified and unique when the loss is your own. Having obtained extensive post-residency training in grief and loss, I thought I had a proficient understanding of the topic of grief and loss, the emotions involved and how one copes, but it is very different when you are confronted with your own loss.
• There is a need for education of physicians, nurses, social workers about the areas of grief and loss. Research has shown that helping the parents early on in managing their emotions to enhance coping with the grief response with education, empathetic listening, and counseling may ultimately help prevent the development of later psychological complications e.g. Post Traumatic Stress Disorder. These topics are important and a necessary components of treating the family of a NICU/ICN baby.
• There appears to be a paucity of information on helping parents and siblings of sick newborns to cope with the Intensive Care Unit Experience. This is something that will need to be corrected to help other families cope with having sick infants in the NICU/ICU.


Personally

• In times of crisis we discover our support system—who is able to stand by when times are difficult and who you can rely upon to be there and to help.
• Sending e-mail messages or creating a website for updates can be a godsend. Instead of frequent phone calls to update people as to what was happening, we could send out e-mail updates.
• This crisis was an opportunity to survive a "for worse" time together as a couple.
• However bad misfortunes appear—often times things could have been much worse. Although harrowing, we realized that we would much rather have had our experience than to trade for anyone else’s. Cole and I both know the outcome could have been so much worse.
• Crises can force you to really focus on what is important, to be grateful for so many little things and to learn to cherish the time we have been given.
• Even in the midst of a crisis, life goes on. My two-year-old daughter, Kaarina was a daily reminder of the importance of living. She pulled us into the present moment and away from focusing all of our energies in worrying about the baby.
• Listen to the wisdom of children. Ever since seeing her sister off of the ventilator in the ICN, Kaarina has insisted that "Baby, so cute and healthy." If I can find enough faith to believe her insights, we no longer have anything to worry about.

I am especially grateful this Mother’s Day to have both girls home, safe, happy and healthy.

Resources:
Brazy JE. My Sick Newborn. 1999. University of Wisconsin and The Center For Perinatal Care at Meriter Hospital Madison, Wisconsin Available at: http://www.pediatrics.wisc.edu/childrenshosp/sicknewborn/t-index.html

Hynan MT. Helping Parents Cope with High Risk Birth. Terror, Grief, Impotence and Anger. Available at:http://www.uwm.edu:80/People/hynan/MINNAEP.html
Hynan MT. Assisting the Trembling Hands that Hold the Tiny Hands: Helping High-Risk Parents Improve Neonatal Outcomes. Paper Presented at the Annual Meeting of the National Perinatal Association, San Antonio, TX, Dec, 2001 Available at: http://www.uwm.edu/~hynan/SanA.html
Hynan MT. Facing a Life Sentence in the NICU. Available at: http://www.uwm.edu:80/People/hynan/LIFER.html
Johnson S. Dealing with Parents’ Needs in the NICU. The Wall Street Journal: May/June 1998. Available at:http://www.glendalememorial.com/wsj/w5-98_1.html
Persistent Pulmonary Hypertension of the Newborn PPHN Available at: http://kidshealth.org/parent/medical/heart/pphn.html
Dyer, KA. On Facing Adversity: Are you a Carrot, an Egg, or a Coffee Bean? April 2002. Available at: http://www.journeyofhearts.org/jofh/resources/adversity
Dyer KA. A Healing Blessing. April2002. Available at: http://www.journeyofhearts.org/jofh/healing/kat_bless

Books:
Albritton S. You Are Not Alone: The NICU Experience. South Weymouth, MA: Children's Medical Ventures, Inc., 1998. A collection of stories written by NICU parents to provide support and hope for those dealing with the NICU experience. Stories are weighted to premature infants and those with congenital heart defects rather than "just" the sick newborn.
Collins PL. Waiting for Baby Joe. Niles, Illinois: Albert Whitman & Company, 1990. This story chronicles the impact of Baby Joe's premature birth on his sister, Missy and her family. Illustrated with black and white photographs, including some of the infant and sibling in the NICU.

© 2002 Kirsti A. Dyer, MD, MS, FAAETS. Journey of Hearts, www.journeyofhearts.org
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