Let’s Hear From Past Attendees!

I attended the PLIDA International Perinatal Bereavement Conference in 2014 and would recommend this conference for all healthcare professionals working in the area of pregnancy loss and infant death.

 I travelled from Dublin, Ireland to attend the 2014 conference. Given the conference was over spread across a number of days, this provided lots of time for networking and in-depth knowledge sharing with delegates.

Since the conference I have developed strong links with a number of delegates and we have worked together on a PLIDA position paper.

I attended pre-conference sessions on memory making and photography. These longer sessions were useful because they were a ‘deep dive’ into specific area of bereavement care. The conferenceprogram was varied, with lots of choice and I got to hear from speakers on a range of projects, initiatives and research from all across the US and Canada.

An important aspect of any conference is the ability to share material with colleagues. Given so much of the material from PLIDA was available electronically, this made it very easy to share with colleagues all across Ireland once I returned from PLIDA 2014.

  • Grace O’Sullivan, Hospice Friendly Hospitals Programme – The Irish Hospice Foundation

 


 

When an adult whom we love dies, we lose what we have known. When a baby dies, we lose what is yet to be known – our future, our dreams and our hopes.

Our second child and only son, Josiah, died shortly after his birth. First, we felt joy to meet Josiah born alive, and then our world fell apart as his life slipped away from our protective bond. As we grieved, my husband and I could find few resources to help us navigate this difficult, unknown time. I struggled with the lack of relevant information and education for parents and health care providers in our community. Then I found the Pregnancy Loss and Infant Death Alliance (PLIDA), a network of integrated and passionate health care professionals and bereaved parent advocates. Around the world, they are committed to increasing awareness and raising the standards of education to meet the needs of families when death comes tragically at the beginning of life. Finding PLIDA changed my life.

When Josiah died, I needed to do something. My arms were empty. I couldn’t hold him, love him, and carry him as I had his older sister, Sarah. I wanted to continue to say his name, to find a way to bring to the world that Josiah was significant, that he mattered.

Today, our family, friends and hundreds of other people have helped to create a legacy for Josiah. They join us every year at Josiah’s Journey Global Weekend to Walk in support of the Paediatric Advanced Care Team (PACT) at the Hospital for Sick Children (SickKids), Toronto. Together we fund a palliative care program that helps families who are expecting the unthinkable – a child whose medical condition is considered to be incompatible with life. We are able to provide much needed medical equipment, education, and resources for parents in palliative care and bereavement. In this way, by making a commitment to quality education and resources for families, I am able to honour Josiah.

After discovering PLIDA, and seeking the wisdom in educators and advocates, I wrote the book that I wish someone had given to me when Josiah died. Loving Your Baby… A Gentle and Practical Guide to Parenting Through Miscarriage, Stillbirth and Infant Death is written for the parents, their precious child, and the caring professionals in the family’s circle of care. Loving Your Baby is a guidebook filled with sensitive and tender ways that parents can parent their baby, honour their baby’s too-brief lifetime and preserve their baby’s legacy after death.

As a mother who has walked this difficult and often complex path, I encourage you to trust in yourself and embrace your natural intuition to bond with, care for and love your baby. Loving your baby during or after his or her death can be beautiful, meaningful and healing. I do not regret the time I spent holding, loving and caring for Josiah during his life and after he passed away. Parenting after loss can be a very special time spent with your baby and your closest loved ones.

PLIDA supports their membership so that families can ultimately make the most of their time with their baby. It shares support, ongoing research, networking opportunities, developing resources and best practices aimed at achieving excellence in perinatal bereavement care. I would wish for every doctor, nurse, obstetrician, pediatrician, policy maker, chaplain, social worker, parent-advocate, midwife and doula to be part of this network.

Shari Morash
Founder, Josiah’s Journey Global Weekend to Walk for Paediatric Advanced Care Team (PACT) at the Hospital for Sick Children (SickKids), Toronto Canada
www.josiahsjourney.ca

Author, Loving Your Baby… A Gentle and Practical Guide to Parenting Through Miscarriage, Stillbirth and Infant Death (2014)
www.lovingyourbaby.ca

 


 

It’s been three long years since I have had the opportunity to be with my PLIDA colleagues at the International Perinatal Bereavement Conference. During those three years, I’ve chatted with several of these wonderful people about issues in practice and research, reviewed some of their manuscripts, chatted via phone and email about research ideas, prepared a chapter for a book co-authored by two colleagues, written items for newsletters and represented PLIDA in my local, regional and national talks. All of that is possible because of the depth of relationships forged with brilliant, caring, and passionate researchers and providers that I’ve come to know through PLIDA. But somehow, even with all that: I miss everyone!

You see, I missed being able to attend the last conference. There was a lot going on in my life, there was a dearth of funding at my work-place, and I felt pulled in the throes of work-life balance issues. I thought it would be fine…I’d go the next time. Well, some of that is true. I AM going to this next conference. Wild horses could not drag me away from it, to be honest. But I was wrong: it hasn’t felt “fine.” I miss my PLIDA/IPBC colleagues down to the very core of my being. I miss the shared enthusiasm, the sense that people “get me” unlike my many caring colleagues who don’t understand the nuances of our lives as professional caregivers who are head- and-heart committed to the families we serve. I miss sessions, and dinners, and impromptu conversations in the hallways, and seeing pictures of families, and hugging those who have been having a hard time, and getting hugs from those who have been following my own journey via social media. We need each other. In a world where families look to us for support, we look to each other for empathic understanding.

For many of us, those families are OUR families, and the issue of perinatal and infant death is OUR issue, both personally and profession– ally. It is a gift to my soul, my vocation, my career trajectory, my sense of self to be immersed with these scholars, educators, practitioners, caregivers and friends even if only for a few days.

I am counting the days (160, as I am writing this!) until I am able to rejoin my peers at the 2016 Biennial International Perinatal Bereavement Conference. Maybe you’re like me: you missed a year and you wonder if people will remember you. YES, we will! Maybe you’re like me last conference: logistical challenges make you wonder if you’ll really miss anything if you can’t attend this year. YES, you will! I want you to know, from my heart, that I want to see every single one of you reading this. I want to give you a hug, and hear how you’re doing. I want to know about your lives, your careers, your questions, your struggles. I want to learn with you in sessions, laugh with you in the conference hallways, cry with you when emotion and vocation overlap and be non-apologetic when you hand me a tissue or I do the same for you. I want to honor you at our caregiver recognition, and reflect with you during quiet moments in our reflection room space. I want to be present among those who care so deeply about this issue that I also care so deeply about. The best thing that we can all do is to BE THERE so we have this experience with and among each other.

I’m looking forward to the desert sun, the colors of dawn, the soothing hues of dusk and most of all, the company of my colleagues. There really is nothing else like it. I hope to see you in September as we transform together.

Your colleague in professional caring,
Sarah Kye Price, PhD, MSW, MS former PLIDA President & past IPBC co-chair