Many parents and families going through pregnancy and infant loss are not aware of how common their experience is and may even feel a sense of isolation as they walk the unfamiliar pathway of saying goodbye to their child before or shortly after meeting them. As we recognize the reality of the loss and the heartbreak experienced by loved ones, we embrace the importance of honoring these beautiful lives and parenting experiences.
What is Pregnancy and Infant Loss?
Pregnancy and Infant Loss is the loss of an expected life. A parent or family may lose a pregnancy through fertility difficulties, miscarriage, interruption of a complicated pregnancy, extremely preterm birth, or stillbirth. In other instances, a pregnancy may be complicated by a complex or severe fetal condition that leads to death around the time of birth or shortly after. And certainly, complications around the time of delivery or life-limiting conditions that are present in a newborn can result in an unexpected infant death.
What Does a Perinatal Palliative Care Team Do?
The Perinatal Palliative Care Team at Nationwide Children's Hospital cares for, partners with, and walks alongside families anticipating or facing pregnancy and infant loss. Palliative Care is a medical specialty focusing on care of patients facing serious or life-limiting conditions. When the need is identified during the prenatal period, Perinatal Palliative Care specialists can become a part of a parent or family's care team. At Nationwide Children's, the Perinatal Palliative Care Team meets families in The Fetal Center around the time they learn about their child's condition. They provide supportive expertise in medical decision-making, emphasizing the importance of each individual family's goals and values.
Perinatal Palliative Care teams explore how values, parental experiences, fears and emotions shape the way that a family makes decisions, knowing that the sacred space around decision-making for a child's life and medical care is very personal. Perinatal Palliative Care Teams are typically comprised of Palliative Care physicians, nurses, social workers, and chaplains. Inclusion of child-life specialists, music therapists, lactation consultants, and home-based hospice teams allow Perinatal Palliative Care Teams to tailor family-centered and culturally sensitive care for each individual family. As a family's journey towards saying hello and goodbye to their child proceeds, the Team walks alongside them as a support, advocate, and expert resource.
Why Do We Recognize Pregnancy and Infant Loss Awareness Month?
Families describe a variety of feelings and experiences around loss of a pregnancy, expected loss following delivery, or unexpected loss of an infant-- grief, confusion, anger, frustration, sadness, loneliness, and loss of connection to everyday life. In the midst of these emotions, many families simultaneously want to celebrate and honor their child's life. Recognizing Pregnancy and Infant Loss Awareness every October allows our community to acknowledge the pain of those going through loss, to support families in having a voice around their own experiences, and to honor the lives lost and recognize the legacies and stories that live on in families lives and hearts.
If you feel that you would benefit from connecting with the Nationwide Children's Hospital Perinatal Palliative Care Team for your own medical care, please contact The Fetal Center at 614-722-BABY.
Abby Orkis practices as a Medical Clinical Social Worker in both the Perinatal & Inpatient AIM Teams [Palliative Care] at Nationwide Children's Hospital.
Amy Brown Schlegel, MD
Dr. Schlegel practices neonatology in the Newborn Intensive Care Units at Nationwide Children's Hospital and the Nationwide Children's Hospital NICU at The Ohio State University Medical Center.
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