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Practical considerations in preparing for a twin delivery with expected death of one twin: Isaac and Liam.

"Perinatal Palliative care focuses on creating a relationship with parents ... the relationship itself offers the potential for healing at a time of the baby's living and dying" (Limbo, Peck, & Toce, 2009, p. 1). I have found this quote from Limbo and colleagues to be very true. I coordinate a Perinatal Bereavement and Palliative Care program in a medium-sized hospital in the Mid-Atlantic region of the US. In this paper, I will illustrate for birth educators some of the practical aspects of preparing for a twin delivery in which one twin would need routine care, and the other would need hospice care.

Our Program

We have had an organized system of Palliative Care/ Perinatal Hospice support since 2005 and have had 28 women/ families request and receive this service.

Our program works closely with Lactation Support and our Childbirth Education program is run by the Lactation Support staff. This collaboration results in tightly integrated care. Our system of care and preexisting working relationships becomes pivotal in the example case presented.

Introduction to the Family and Beginning Our Journey Together

Sandra was a 28 year-old old prima gravida who learned she had a twin gestation at her first prenatal appointment. After initial excitement and anticipation of two babies, she then learned one of the twins was anencephalic. The incidence of anencephaly is 1 in 1000 pregnancies in the United States (Gold, 2007). Sandra became aware of the perinatal palliative care service. These services give the health care provider a chance to express shared value in her son's life. Sandra was acknowledged for her prerogative to make pivotal plans and decisions about how she and her husband Sam would parent both of their children before, during, and after their birth.

At one of the midwifery appointments soon after the diagnosis of anencephaly, the factors involved on the day the boys were born were discussed. The family was given an outline of a "Palliative Care Birth Plan" (University of North Carolina Center for Maternal and Infant Health, 2012). This fill-in tool is intended to be a flexible way to assess and assist parents in identifying their preferences and provide documentation.

Throughout the rest of her pregnancy, Sandra spoke with the center via phone and met face to face many times. During those meetings, medical questions were addressed including whether Isaac might experience pain at birth, but more often issues considered were ones any well-prepared Childbirth Educator could discuss. She talked about the experience with family/friends, arranging private Childbirth classes, photography at birth, journaling, spiritual support ideas, postpartum room preferences, mementos to make at birth, funeral ideas, pre-existing relationships with others who were affected by this experience, and many other similar topics.

Studies of parental reaction to care at the time of death reveal a "lack of emotional support or frank insensitivity" (Gold, 2007) to be the most frequent complaint of care Conversations about the most mundane of details (i.e. what clothes they will wear after birth) can quickly become intense and elicit a great deal of emotion. It is important those interacting with the parents have the capacity to deal with the topic at hand. They need to expect raw and intense emotion and remain calm and understanding.

Sandra was encouraged to discuss many things she could do during her pregnancy to assist in coping, commemorating, and preparing. She contacted a mother who suffered an expected death of a baby at term. This mother offered to be a peer companion to Sandra on her journey. Sandra did a belly mold (as well as other expressions of art), arranged for special clothes and blankets for the boys, interviewed photographers, consulted lactation specialists, and participated in Yoga. Additionally, she sought out both informal and professional levels of support, including private birth education. Private birth education is considered preferable to traditional community childbirth education class (Sumner, Kavanaugh, & Moro, 2006).

Sandra had questions about the possibility of organ / tissue donation, and the concern she would have to make a decision was burdensome. As stated in A Gift of Time "Organ donation from a newborn is possible less often than is popularly believed" (Kuebelbeck & Davis, 2011). Because Isaac was expected to be much less than the minimum weight for tissue donation, he would not be eligible to donate. Knowing no firm decision needed to be made provided some relief.

Both sets of grandparents came for a private tour of the hospital with added explanations of what they might expect on the day the boys were born. Visitors can often find a hospital confusing when they see it for the first time and that confusion can cause unnecessary stress. Private tours are arranged for all Palliative Care families and siblings are encouraged to come for the tour. There are added benefits of introducing family to staff encountered during the tour.


The Delivery

The day of delivery came at 35.5 weeks gestation with spontaneous labor. A Cesarian section was planned. A high-quality still-camera was put into the Operating Room, but we were unprepared when Isaac cried loudly at birth. This glitch was a reminder to have video-capable cameras at all Palliative Care deliveries. Sandra and Sam saw both boys at delivery, but as healthy-but-tiny Liam went to the NICU, Sandra focused all her energy on Isaac. Her bed had barely stopped rolling from the OR when she reached out for Isaac. What happened next left all the professionals baffled, astonished, and thrilled--Isaac did an amazing breast crawl and was not happy until he had nestled himself between her breasts and suckled.

Mom, Dad, and baby had a respected and supported place to meet one another, and none let the surgical delivery impair the process. Palliative care deliveries are "sacred parenting" and "giving parents a safe place to parent." Isaac stayed safely nestled between Sandra's breasts in recovery and through her transfer to the Mother Baby / Postpartum unit.

The arrival of Rosanne, the photographer allowed pictures of Isaac with grandparents and dad and both babies. These photos would be a treasured memory of the fleeting moment where all of the men in this family were in the same place at the same time. Photographs and memento making have been cited as two specific items parents appreciate about the delivery long after the birth (Gold, 2007). Sandra's strong desire to keep Isaac close, breastfeed him if possible, and prepare for Liam to breastfeed, made her need for Lactation support crucial. Her preparation ahead of time helped her mother Isaac in a way she found meaningful. She was then able to shift focus to caring for and breastfeeding Liam when the time came.

Liam was released from the NICU sooner than we expected and was able to join Isaac while he was still alive. These moments were very precious. Isaac died in his mother's arms nine hours after the boys were born. Sandra waited to do Isaac's bath until the next day. The physical process of bathing took on a sense of ritual for her. Responses to such intense experiences are very individual. It is helpful to be sensitive to parents reacting with unexpected intensity over one particular aspect of care, and this occurred when the time came for Isaac to physically leave his mother's room This challenge had a dear and loving resolution when a friend was able to carry Isaac out of Sandra's room in her arms. As with anything in life, we learn as we experience. In Liam and Isaac's birth, and Isaac's death, there were things we wish had gone differently. Despite many photos being taken, there was not one with all four of them in it.

When working with a mom who is expecting her child to die at birth, she may ask how we will know what to do. I often say "the baby will tell us." Sandra shared she learned to "Believe in your child." Isaac surprised all of us, and we were surrounded by the right people who let him shine."

The level of involvement a Birth Educator has in the preparation for and planning of a palliative care delivery will depend on parent requests, level of the educator's expertise, the parents' team, and other factors. The simple willingness to be with the family at this sacred time can be a healing gift which will assist them, not only at the time of the birth, but with how they process the experience for years to come.

Some of the tenets central to effective Perinatal Hospice incorporated into this case are:

* validation of the baby's life and personhood

* empowerment of the couple to direct their child's care

* anticipatory guidance

* helping parents frame the experience with reachable goals

* written plan of care

* plans for memory making at birth

* involving extended family and others

* reaching out to new support networks

* hospital preparedness

* coordinating pre-admission expert consultations (Neonatology, Lactation)

* avoiding separation of baby from parents

* validating the parental role in the midst of the whole experience

* follow up


D' Ameida, M., Hume, R. F., Lathrop, A., Njoku, A., & Calhoun, B. C. (2006). Perinatal hospice: Family-centered care of the fetus with a lethal condition. Journal of American Physicians and Surgeons, 11(2), 52.

Limbo R, Toce S, & Peck T. (2008/2009). Resolve through sharing position paper on perinatal palliative care. La Crosse, WI: Gunderson Lutheran Medical Foundation, Inc.

University of North Carolina (UNC) Center for Maternal and Infant Health. UNC perinatal palliative care--support program. Retrieved January 2012, from

Gold, K. J. (2007). Navigating care after a baby dies: a systematic review of parent experiences with health providers. Journal of Perinatology, 27, 232-233.

Sumner, L. H., Kavanaugh, K., & Moro, T. (2006). Extending palliative care into pregnancy and the immediate newborn period. Journal of Perinatal and Neonatal Nursing, 20(1): 114.

Kuebelbeck, A. & Davis, Deborah P. (2011). A gift of time. Baltimore, Maryland: Johns Hopkins.

by Tammy Ruiz, RN

Tammy Ruiz, RN has been a Nurse in Maternal Child Health for over 26 years with experience in Pediatric & Neonatal ICU (with brief detours into adult hospice and Clinical Pastoral care). She has specialized in Perinatal Bereavement and Palliative care for the last 7 years and has taught on these topics regionally, nationally and to international students in addition to creating an educational video on Perinatal Hospice care that has been seen in 70 countries. She serves on the Board of Pregnancy Loss Infant Death Alliance.
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Author:Ruiz, Tammy
Publication:International Journal of Childbirth Education
Article Type:Viewpoint essay
Date:Apr 1, 2012
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