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. This experience enhanced my understanding of a patient’s and family’s frustrations with medical treatment, in particular the helplessness of being "just" a family member and being left out of the medical decisions. 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. As the family member I learned to filter much of the information given to us, selectively listening to the treating physicians and sometimes having to ignore the nurses and therapists.
• The emotions involved with the grief response are magnified and unique when the loss is your own. I know from my training that as a profession physicians are taught that the best way of dealing with loss, and in particular the strong emotional reactions that ensue from the resulting grief response, is to ignore it, avoid it and hope someone else e.g. nurses, social workers, clergy deal with it. 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 facing the loss. Thankfully there were several empathetic nurses and neonatologists who listened as the events unfolded plus a dedicated Reverend who came into the hospital at 4:00 am at our request to provide support and to give our daughter a blessing before she was transferred from one hospital to the next.
• There is a need for education of physicians, nurses, social workers about the areas of grief and loss. This experience conformed my prior observations of the lack of understanding by healthcare professionals about the areas of grief and loss. These topics are important and a necessary components of treating the family of a NICU/ICN baby. 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. My personal experience will make it easier to professionally teach these areas.
• There appears to be a paucity of information on helping parents and siblings of sick newborns to cope with the Intensive Care Unit Experience. It took the better part of a month surfing the Internet to find resources. 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. This is something that will need to be corrected.

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. We experienced an outpouring of love, concern and e-mails of support from friends and family near and abroad. Many of them I had not been in touch with in a quite while. It was a great comfort and helped us remain optimistic and sustain our spirits, knowing there were so many friends in addition to family who kept Kristiina and us in their thoughts and prayers. The ability to e-mail messages proved to be a godsend for us. 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. In addition my husband encountered a major loss in his life. It gave him the opportunity to see me in action as a physician and to observe integrative medicine, the "extras" that I have used with my patients in the past. Most importantly it gave Cole experienced first hand and better understand the importance of the work that I have been undertaking on grief education.
• 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. Since this experience I have learned to be grateful for many of the little things that we lost during the first two weeks of her life—such as changing a diaper, hearing her cry, having the opportunity to touch, to hold, or to nurse her. We learned to cherish the time we are given because life is unpredictable, it can change quickly and we never know just how much time each of us will have.
• 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. Socrates wisely pointed out

When we looked around the ICN (Intensive Care Nursery) we could see babies, especially the preemies, that appeared to be doing worse than Kristiina. Cole and I both know the outcome could have been so much worse. We are grateful for Kristtina’s relatively quick and healthy return to us after such a frightening start to her life. In the grand scheme of things we only lost two weeks of her life. Thus far everything indicates that she will be a normal, healthy child. I am especially grateful this Mother’s Day to have both girls home safe, happy and healthy.

Even in the midst of a crisis, life goes on. Perhaps my greatest teacher during all of this was my two-year-old daughter, Kaarina. As she had been following the September 11th tragedy, Kaarina proved to be 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. She somehow intuitively knew when we needed a hug. Her curiosity for everything around her, inquisitive nature, exuberance for life and contagious laughter kept us smiling and reminded me there were still many reasons to be thankful and happy despite the medical crisis.

Listen to the wisdom of children. They say that children are more in touch with other realms because they have not become jaded and had their faith and hope extinguished as often happens with adults. Children may be better able to connect on other planes and can offer insights that adults may no longer notice or feel. Ever since seeing her sister off of the ventilator in the ICN, Kaarina, has insisted that "Baby, so cute and healthy." Perhaps she is the wisest of us all and senses much more about the truth than the rest of us. If I can find enough faith to believe her insights, we no longer have anything to worry about.

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 

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.

Part I - Mother's Day 2002