Although pregnancy and the birth of a baby are often joyous times, for some the unthinkable happens. When a baby is found to have a lethal health condition, the provider to first meet with the family and those that walk with them through their difficult journey all will make a lasting impression. Knowledge of and embracing perinatal bereavement services is critical when working with such families.

In 2007, an endowment fund was established by Mary Anne and Bob Rennebohm as a memorial to their son, Adam. This fund supports the Adam Rennebohm Perinatal Bereavement Conference.

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Adam’s story

Mary Anne and Bob Rennebohm had two healthy daughters when they discovered they were pregnant with their third baby. Early in the pregnancy, she unexpectedly experienced a miscarriage. The doctor in the emergency room offered what he must have considered empathetic words of advice: “'It was meant to be. You’re young, and you can have another baby.’”

Soon afterwards, she and her husband discovered they were expecting again. Excitement grew as it became clearer with time that this baby would make it through the pregnancy. A nursery was created with their daughter’s help. Anticipation was high. Would it be a boy or a girl, a brother or a sister?

Their son, Adam Rennebohm, was born on August 23, 1983. The day of his arrival turned from excitement and anticipation to anxiety and unknowns. At birth, Adam’s doctors recognized that he needed special help and he was quickly taken to the neonatal intensive care unit. In the words of Mary Anne, “a difficult journey had begun.” Adam was diagnosed with a genetic syndrome known as trisomy 13 or Patau syndrome. Given the severity of this diagnosis and his related health concerns, Adam passed away a week later on August 30, 1983.

Adam’s short but brilliant life has influenced the Rennebohms forever; small footprints were left on their hearts. Reflecting back on this time in their lives, they have since recognized a lack of resources and invaluable information that they wish had been available to them. How were they told the news about their son’s life and death? How should they tell their young daughters that their baby brother died? Do they have a funeral for their son? What do they say to friends and family and how do they field their questions and comments? When do they take down the nursery?

Questions and experiences such as these have made Mary Anne and Bob dedicated to helping health care providers understand the family experience when a baby dies.

About the Adam Rennebohm Perinatal Bereavement Conference

The Adam Rennebohm Perinatal Bereavement Conference is a biennial, daylong seminar hosted by experts from Resolve Through Sharing. Although conference attendance was initially offered to genetic counseling students, participation by others dedicated to perinatal care such as nurses, medical doctors, physician assistants, certified nurse midwives, social workers, and chaplains is encouraged and supported. The goal is to create a strong knowledge and experiential foundation for learners so that they can support families whose baby dies.

With a focus on family-centered care, participants learn about grief associated with perinatal loss and the importance of communication between providers and families. Through expert-led discussions, students can identify strategies for caring for families who experience perinatal loss, recognize the value of medical genetics diagnostic resources, and ultimately provide perinatal hospice services and long term bereavement assistance.

At the most recent conference, genetic counseling students from the programs at the University of Wisconsin, the University of Minnesota and Northwestern University have all appreciated this conference. Reflections from past attendees include:

I really appreciate all that I have learned today. My goal is to be a strong support to the families I encounter and these bereavement lectures have given me some of the tools to do that. Thank you.

As students we're often presented with the range of outcomes that surround fetal loss but are not always sure about those choices. This information was extremely helpful and will be useful in patient care. Thanks!