by Kirsti A. Dyer, M.D., M.S.

No one is as capable ofgratitude
as one who has emergedfrom the kingdom of night.

This Easter I was faced with the most challengingcrisis of my life—the near loss of my second daughter shortly after herbirth. The two weeks following her sudden admission to the Intensive CareNursery (ICN), was spent in a haze, making daily trips to San Franciscoto spend several hours with her, placing frequent phone calls to keep updatedwith her progress and spending restless nights worrying about how she wasdoing. Now that we have emerged from our fog of coping and struggling tomake sense of what happened during this sudden unexpected medical crisis,we are extremely grateful for what we almost lost. It is likely that atan 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 havebeen spent with one live daughter and only a memory of the second. Consequently,I will celebrate Mother’s Day 2002  a renewed sense of gratitude andappreciation of life, very thankful for both of my girls.

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

Her diagnosis was Persistent Fetal Circulationleading to Persistent Pulmonary Hypertension of the Newborn (PPHN). Forsome reason, the signal required at birth to switch from fetal circulationto adult circulation did not occur. The precipitating etiology was unclearand never determined.  The treatment was mechanical ventilation withhigh level oxygen to support her lungs and sustain her blood oxygen levels.Kristiina demonstrated some, but not all, of the signs and symptoms ofPPHN making us wonder if she truly had the disorder, or the neonatologistscaught it early enough so that the condition never fully manifested. Stillbecause of the PPHN condition, Kristiina became agitated during the firstfew days when handled or touched. Much of the treatment once she was intubatedand on the ventilator was watchful waiting without touching her, allowingher body the time it needed to heal. This was very difficult to do bothas a physician and as a mother.

Being the Physician
Perhaps because physicians are so used to beingin control, we often do not know what to do or when faced wit events ordiagnoses that are beyond our control. In this situation I had to turnover complete control of her case to the neonatology team and consequentlyexperienced feelings of complete helplessness. The inability to do anything,to contribute to my daughter’s care medically as a physician or emotionallyto 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—beingin the hospital, caring for patients and providing them comfort duringa tormenting time? It was impossible.

It was also challenging taking a "crash course"in neonatal medicine and trying to find resources—medical and other—toget up to speed with how newborns are currently treated in the NeonatalIntensive Care. Part of the reason for selecting adult medicine as my specialtywas 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 forcedto confront and quickly overcome these fears.

I don’t know if it is possible, nor should itbe desirable, having spent so much time in hospitals and practicing medicineto be able to flip an internal switch and suddenly "turn off" being a physicianand just be a mother. Yet in this case I was unable to care for my ownnewborn daughter either as a physician or as mom. After I had identifiedmyself to a NICU nurse as "Dr. Dyer," I was stunned and quite offendedwhen she said to me "Here you aren’t Dr. Dyer. You are just ‘Mom.’" I identitymyself 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 demotedme 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 forher other than family. From the beginning, I didn’t have a choice withKristiina’s care. She was whisked into the NICU while I was in the recoveryroom. The pediatrician was making the necessary emergent decisions forher medical treatment. Still confined to my bed awaiting the effects ofthe spinal anesthesia to wear off, I had to ask the nurses to get the pediatricianto come to my room and tell me what had happened to my daughter. In hisdefense, he had been keeping my husband, a non-physician updated, but Colehadn’t conveyed the gravity of the situation to me.

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

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

As her mother, in many ways, it was almost easierwatching her during the first week when Kristiina was sleeping, intubatedand receiving pain medications. I could tell her to keep sleeping and useher strength to get healthy. Once she was off the ventilator and neededto wake up, it was difficult imagining her waking up into a world thatwas 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. Shewould soon discover that everything doesn’t hurt, that everyone isn’t tryingto hurt you and that life will get better. We wanted to provide her withcomfort and strength during the few hours we were visiting each day, hopingthat our presence would make things better overall and she would not feelworse during the time we couldn’t be with her.

One of the challenges we faced was trying to balancethe needs of two children—a hospitalized newborn and an active two-year-old—withoutfeeling guilty for slighting either one of them. We recognized that wecouldn’t spend 24 hours with either of them, so had to do the best thatwe could by both of our girls—spending what time we could in the ICN withKristiina letting her hear familiar voices and sensing our presence, andreading stories, drawing pictures or building sand castles with Kaarina.I found the most difficult part of being a NICU/ICN parent was remainingpatient, focusing on the positive rather than allowing yourself to thinkabout the negative and finding something, anything you could do to help.

Becoming Empowered Parents
Initially the ordeal was especially frustratingbecause there seemed to be so little we could actually do, further magnifyingfeeling helpless. In becoming an empowered parent and "do something" Isearched the Internet for articles and information that would educate us(quickly) about what was happening to our daughter and for additional modalitiesthat could be integrated into her treatment. These modalities includedprayers and blessings, music, womb heart sounds and Reiki (healing touch).In utilizing an integrative medicine approach we hoped to bolster her inherentstrength and inner healing abilities recognizing what Hippocrates saidthat

Within days following her birth, thanks to theInternet, we were able to quickly contact friends and family to notifythem of what had happened. On Easter, Kristiina was included on severalprayer lists and circles—two days after her birth. Professionally, I havelong had the belief that there is a healing power in holding a person inone’s thoughts—whether through saying prayers or blessings or lightingcandles. Via phone calls and e-mail messages we tapped into the healingpowers to create a circle of positive thoughts and energies from peoplearound the world. to hold Kristiina in their thoughts and prayers to mentallyaid in her healing process. I truly believe that having so many peoplehold Kristiina in their thoughts and prayers, mentally aided in her healingprocess. The Circle of Healing helped keep her safe and protected untilshe was strong and recuperated.

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

Professionally

• Physicians and other healthcare professionalscan gain invaluable insights and improve their empathetic skills from switchingroles and becoming a family member.  We can learn so much aboutcommunication, patient’s feelings and interacting with family from beingon the patient’s side of the diagnosis and treatment plan and seeing thingsthrough their eyes.
• It is important for physicians, nurses and othermembers of the team to talk with the families, keep them informed of whatis 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 havebeen better.
• In communicating with the patient and family,especially in emergency and critical care situations, words should be carefullyselected, remembering that the family may scrutinize every word—lookingfor hope and hidden meanings.  I discovered just how much familiescan hang on every word spoken by physicians and nurses, every change intreatment, every little response by the child. Even subtle nuances, bodylanguage and unspoken expressions were subject to careful scrutiny andinterpretation.
• The emotions involved with the grief responseare magnified and unique when the loss is your own.  Having obtainedextensive post-residency training in grief and loss, I thought I had aproficient understanding of the topic of grief and loss, the emotions involvedand how one copes, but it is very different when you are confronted withyour own loss.
• There is a need for education of physicians, nurses,social workers about the areas of grief and loss.  Research hasshown that helping the parents early on in managing their emotions to enhancecoping with the grief response with education, empathetic listening, andcounseling may ultimately help prevent the development of later psychologicalcomplications e.g. Post Traumatic Stress Disorder.  These topics areimportant and a necessary components of treating the family of a NICU/ICNbaby.
• There appears to be a paucity of information onhelping parents and siblings of sick newborns to cope with the IntensiveCare Unit Experience.  This is something that will need to becorrected to help other families cope with having sick infants in the NICU/ICU.


Personally

• In times of crisis we discover our support system—whois able to stand by when times are difficult and who you can rely uponto be there and to help.
• Sending e-mail messages or creating a websitefor updates can be a godsend. Instead of frequent phone calls to updatepeople as to what was happening, we could send out e-mail updates.
• This crisis was an opportunity to survive a "forworse" time together as a couple.
• However bad misfortunes appear—often times thingscould have been much worse. Although harrowing, we realized that wewould 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 isimportant, to be grateful for so many little things and to learn tocherish the time we have been given.
• Even in the midst of a crisis, life goes on. Mytwo-year-old daughter, Kaarina was a daily reminder of the importance ofliving. She pulled us into the present moment and away from focusing allof our energies in worrying about the baby.
• Listen to the wisdom of children. Ever sinceseeing her sister off of the ventilator in the ICN, Kaarina has insistedthat "Baby, so cute and healthy." If I can find enough faith to believeher insights, we no longer have anything to worry about.

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

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 BabyJoe. 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.