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

  • Emotional Responses of Parents. Available at: http://www.pediatrics.wisc.edu/childrenshosp/sicknewborn/t-emotional.html
  • Grief & Loss Resources. Available at: http://www.pediatrics.wisc.edu/childrenshosp/sicknewborn/t-lossref.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
    All Rights Reserved
    A single copy of this paper may be reproduced for educational use only
    For all other uses contact Dr. Dyer at: Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

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