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About the Project

Project PoppySeed is an exploration of perinatal grief resulting from the loss of a pregnancy or baby to anencephaly. This project came about when my sister’s first child was diagnosed with anencephaly during her 20 week ultrasound appointment. My sister and her husband chose to carry her daughter to term, wishing to donate her organs, and asked me to be her advocate and help them fulfill this wish.

At the time, I was a Master’s prepared Registered Nurse working in the operating room. I had participated in multiple organ procurement surgeries and was confident I would succeed in fulfilling my sister and her husband’s wishes. However, as time progressed, I encountered many roadblocks, and was unable to find the necessary resources despite long days and nights making phone call after phone call. My certainty in fulfilling this request began to waiver.

One day I came upon Purposeful Gift, a foundation dedicated to helping parents wishing to donate the organs of their baby with anencephaly. Bethany Conkel, founder of the foundation and mother to a son with anencephaly, was able to find donation opportunities for my niece.

This experience caused me to wonder how individuals with no medical background could negotiate such an involved, complex process. Knowing some good came from the heartbreak of losing my niece brought great comfort to my sister, her husband, and our entire family. However, what about all the other parents out there? Who is helping them?

As I began my doctoral studies, I decided to dedicate my dissertation and future career of research to learning how nurses and doctors can better help parents losing a baby to anencephaly or other congenital anomalies. Project PoppySeed: Experiencing Anencephaly, a Parent’s Perspective is the first step in this journey. I wish to know what parents experience during this time, thus learning how their experience impacts their lives in the future.

Contact Information

Shandeign Berry

Shandeigh N. Berry, PhD(c), RN, CNOR
Washington State University
College of Nursing
shandeigh.berry@wsu.edu
360-880-1097

Why Project PoppySeed?

Before my expectant sister and her husband learned the sex of their baby, they did not want to call their child “it.” At the point in the pregnancy they learned they were expecting, their little one was the size of a poppy seed, so until they could learn the sex of their baby, they decided to call “it” their little “Poppy Seed.”

Poppies have since become an important symbol of the love and memory of the brief time our little Poppy Seed was with us. To this day, friends and family grow poppies in their garden each year, and many of us have poppies decorating our homes. As it is this little girl who inspired my research, I thought it only appropriate to commemorate her by naming my research endeavors “Project PoppySeed.”

Current Research

Project PoppySeed: Experiencing Anencephaly, a Parent’s Perspective

This research study is being done to better understand what parents experience during a pregnancy complicated by anencephaly, as very little is currently known. Gaining a better understanding of what parents go through during this difficult time will help doctors and nurses understand how to provide more appropriate, sensitive, and patient-centered care. If you have lost a pregnancy or baby to anencephaly and meet the Eligibility Criteria, you are invited to participate in Project PoppySeed research projects. This current study involves an interview which will take about one hour. However, we wish to know your story as you wish to share it, and will adjust the length of your interview to allow you to share your story according to your needs. It may take more than one interview for you to share us your story, if that is the case, we will set up a second or third interview as necessary. You will also be asked to complete the Perinatal Grief Intensity Scale (14 questions) and a demographic questionnaire (17 questions).

Eligibility Criteria

If you are interested in joining Project PoppySeed: Experiencing Anencephaly, a Parent’s Perspective, you must be able to answer “yes” to the following questions:

  1. Have you had a pregnancy complicate by anencephaly?
  2. Are you over 18 years of age?
  3. Can you read, write, and speak English fluently?

Pregnant individuals may not participate in this study.

Common questions concerning eligibility:

Q: Are only women eligible to participate in this study?
A:
No, men are an important part of this story, and welcome to join.

Q: My or my partner’s pregnancy complicated by anencephaly occurred years ago, is there a cutoff point for those eligible to participate?
A:
There is no cutoff for eligibility based on the time which has passed since your pregnancy complicated by anencephaly.

Q: My or my partner’s pregnancy complicated by anencephaly was terminated, am I still eligible?
A:
Yes. Pregnancies complicated by anencephaly which were carried to term, terminated, or miscarried are all eligible to participate.

Q: I meet the eligibility criteria and wish to participate, however, my partner is not interested in joining the study, am I still eligible?
A:
Yes, your participation in the study is not dependent upon your partner also joining.

Q: I or my partner lost a baby to a congenital anomaly other than anencephaly, am I still eligible to participate?
A:
No, this study is focusing specifically on perinatal loss associated with anencephaly. While your loss is no less devastating, you will not be eligible for this study. However, you may be eligible for future studies. If you are interested in joining the e-mail list, please sign up here. Also, there are many perinatal grief resources available to you.

Q: My partner and I are no longer together, am I still eligible to join?
A:
Yes, it is not a study requirement for you and your partner to be together in order to join this study.If you have further questions, please e-mail me at shandeigh.berry@wsu.edu

What will I be asked to do if I am in this study?

If you take part in the study, you will be asked to tell us about your experience of having a pregnancy complicated by anencephaly. We will gather information in the following ways:

  • Interview. During your interview, you and the interviewer will be the only persons. You will be asked to tell the interviewer about your experience of having a pregnancy complicated by anencephaly. The interviewer may ask you “clarifying questions,” which means asking a question to assure they understand what you are saying.
  • The length of time each interview will take may vary. The typical time each interview will take is approximately one hour. However, we wish to understand your entire story, and interviews may take more or less than one hour. It may also take more than one interview to tell your story.
  • During the interview, you will be asked to pick a name for the interviewer to call you (a pseudonym) for the remainder of the study. This is to protect your identity. If you would rather we not refer to you by another name, we will use non-descriptive terms such as he/she, or they.
  • You may decline to share certain information if you wish. If you become distressed at any point during the interview, or if you wish the interview to be over, we will stop the interview. There will be no penalty or consequence for not finishing the study.
  • Each interview will be audio recorded by the interviewer and later transcribed by a professional, university approved transcriptionist. All your identifying information will be removed from the audio recording prior to being transcribed.
  • Perinatal Grief Intensity Scale (PGIS): The PGIS is a 14 item questionnaire which helps healthcare professionals such as doctors and nurses better recognize those who are likely to have intense grief after an early or late pregnancy loss or death of an infant.
  • The length of time this will take to complete is approximately 15 minutes. However, this time approximation may vary for each person.
  • Demographic Questionnaire: This is a 17 item questionnaire to better help the research team understand your gender, age, race, and other related characteristics. These questions are important to answer as we attempt to better understand how to help parents who are experiencing a pregnancy complicated by anencephaly.
  • The length of time to complete this questionnaire is approximately 20 minutes, however, the time may vary from person to person.

How can I participate in this study?

If you or your partner have lost a pregnancy or baby to anencephaly, are able to read, write, and speak English, and are not currently pregnant, you are eligible to participate in this study. If you are interested or wish to learn more, please feel free to contact Shandeigh Berry through phone (360) 880-1097 or e-mail shandeigh.berry@wsu.edu.

How can I learn of other research opportunities?

If you are interested in learning more about future research opportunities, you may sign up to receive an e-mail notification of upcoming studies.

 

Resources

If you or someone you know has experienced the loss of a pregnancy or baby, whether to anencephaly, other congenital anomalies, or causes unknown, you are not alone. There are several resources and support groups available.

Support Groups and Resources

Share: Pregnancy and Infant Loss Support www.nationalshare.org
This resource provides support and information for families who have experienced the death of a baby through early pregnancy loss, stillbirth, or in the first few months of life.

 The MISS Foundation www.missfoundation.org
The MISS Foundation provides support and resources to families after the death of a child from any cause, participates in legislative and advocacy issues, community engagement and volunteerism, and culturally competent, multidisciplinary, education opportunities. It provides online support groups, listings of local in-person support opportunities, and a regular newsletter for parents. The Foundation commits itself to providing long-term support to families after a child’s death.

Now I Lay Me Down to Sleep www.nowilaymedowntosleep.org
This resource offers infant remembrance photography to parents, free of charge, through a national network of volunteers helping parents who are experiencing neonatal death.

Courageous Parents Network http://courageousparentsnetwork.org/
The goal of this network is to support parents and families of children living with life–limiting illness with the tools they need as they adjust to the prognosis and then when they contemplate their child’s transition to end–of–life. This is accomplished through providing parents with coping resources around anticipatory grief, bereavement and all the living in-between. Parents share through video their experiences and feelings, speaking frankly about intimate challenges and moments in caring for their sick child including through the end–of–life.

Perinatal Hospice www.perinatalhospice.org
Perinatal Hospice offers general information and support for families, caregivers, and providers.

Anencephaly Foundations

Purposeful Gift https://purposefulgift.com/en/\
Some parents wish to create a legacy for their baby through organ and tissue donation. Purposeful Gift is a foundation which provides parents with information regarding organ and tissue donation for transplantation and research.

Anencephaly.info https://www.anencephaly.info/
Anencephaly.info provides information about anencephaly for parents, families and caregivers.

Additional Resources

Resources for Medical Professionals

Glossary

  • Anencephaly: A birth defect in which the brain and spinal cord tissue (neural tube) does not form by the 28th day after conception. The cerebral hemispheres, or upper brain, are either missing or very small. Babies with this condition will not survive.
  • Congenital Anomalies: Birth defect.
  • Perinatal: The timeframe surrounding pregnancy, beginning with conception and ending at the 28th day after the baby is born.
  • Perinatal Grief: Deep sorrow and sadness following the loss of a pregnancy or infant.
Red poppies over a white background.