What is Grief Support for Neonatal Death? An Interview with Ellen Daley

Ellen Kelly Daley is the president of the board of directors at HAND, a resource network of parents, professionals, and volunteers who provide support for those who have lost a baby before, during, or after birth. She is a professional counselor and the associate director of the career services center at the University of San Francisco. 

Katie: First of all, what is your role at HAND and how did you get involved?

Ellen: Right now I’m president of the board of directors, and have been since January 2013. I was on the board previously for three years before that. I came to HAND about four and a half years ago after losing a child — my son Seamus was stillborn. He was diagnosed in utero with Trisomy 18, which is a chromosomal condition that’s not compatible with life. Unlike a lot of parents who come to HAND not anticipating anything going on before birth, we had some forewarning and he died during the labor process. I found HAND, which offers neonatal death support, through a Google search two days after his funeral and I went to a meeting that night. For me, it was the key to my healing after such a traumatic loss. It was my lifeline.

Ellen and her husband with their son, Seamus

I look back now and I can’t imagine my healing process without HAND. That is why I’m so compelled to give back to the organization. Four months after I started attending meetings, I went through the facilitator training process. I knew because of my counseling background, and because I consider myself a helper, I knew I wanted to be a facilitator. I started in 2009 during the same year I successfully became pregnant again. Thankfully, I now have a three-year-old girl named Patsy, and I really started facilitating in earnest after she was born. Right now I have two roles as a grief meeting facilitator and president of the board.

Katie: Can you describe some of the services HAND provides?

Ellen: So we provide two types of meetings for neonatal death: grief support (one of the first ways parents come to us), and a subsequent pregnancy support meeting. I would say the majority of people who have experienced losing a child do want to try and conceive again, and when they do there is naturally a lot of fear and anxiety about history repeating itself. That’s when it’s effective to talk to other people who’ve miscarried, or who are pregnant and worried. We also offer phone support, and we have Spanish speaking and Cantonese speaking support volunteers. We have three different chapters — San Mateo, San Francisco, and Santa Cruz. We also host a service of remembrance every October. That is a time for us; it is a time for all parents and families that have ever been involved to remember our babies. Additionally, October is national pregnancy and infant loss month. During this event, we have musicians performing reflective music, poetry readings, and we read all of the baby’s names. Then, at the end, we scatter wildflower seeds. It’s a very serene, peaceful setting. At HAND, we also do outreach to health care providers, hospitals, and doctors’ offices — anyone who could come into contact with a mother who has experienced a neonatal loss. In fact, many people hear about us through their hospital. Occasionally, the hospital will let us do a presentation of our services so they can better understand the perspective of those who’ve had a loss.

Photo credit: @Doug88888

Katie: What specific support do you offer for mothers who’ve just lost an infant?

Well, typically the first entry point is the meeting. We are not trained counselors (although some of us are), but we are all bereaved parents. We share our stories on anything from our transition back to work, to the experience of milk coming in with no baby to nurse. We share the emails for who was at that meeting so there can be ongoing support. The really neat thing is that some friendships have formed between the parents who’ve gone to HAND — especially the mothers. Typically, the parents come together to a meeting, but men and women grieve differently, especially with the loss of an infant, so often the mother will continue to come to meetings whereas the father might not after a certain point. In my own experience at HAND, I made four very good friends. Each of us had losses in 2008 and we all started connecting after the meetings. We all had babies in 2010 and published our story in a newsletter. It was amazing that I was able to find these friends who I am still very, very close to.

Katie: How does the support differ for those who’ve lost their only child versus those who have other, living children?

On our website we have a list of library resources. For older siblings, there are a lot of books describing what has happened. We also try to connect them with parents who’ve experienced that similar situation. A lot of the support is person-to-person and trying to connect people with similar situations. HAND has been in existence for 30 years, and there are lots of stories; even here where I work at USF, there was another woman who I found out was pregnant with a baby who had Trisomy 18. This was within six months of Seamus being born, so I supported her and was at the hospital when her baby was born. I’ve provided support to another woman with a similar situation. There are so many different types of losses, so we don’t have specific meetings, but we try to connect people with others who’ve had similar losses. At the end of the day, we all don’t have a baby. That’s the unifying factor.

Katie: I was going to ask how long each person uses HAND’s services, but it sounds like it’s an ongoing, continuous process.

Absolutely. Some people continue to come back on the anniversary of losing their baby. Sometimes they come back just because of all the emotions it brings up. At Santa Cruz, they have a lot of alums who come back to support new parents. Many people are involved for a long time or at least come back for the remembrance service in October.

Katie: Is there anything else you’d like our readers to know?

Just that we would love for people to know about our services, and to utilize them. None of the people here ever thought they would be, but if you’re in that club, you want other people you can count on, and who can help support you. It’s so comforting to know there’s a safe place to go to mourn, cry, grieve, yell — whatever it is you need to do. Losing a baby goes against the natural order of things. When someone is fortunate enough to get pregnant, you expect to have that baby live a long life. But that doesn’t always happen, and that’s where HAND steps in to provide the support and guidance through the grieving process.

Katie: Thanks, Ellen!

For more information, visit: http://handsupport.org/

Related Articles:

• What is Kara Grief Support? An Interview with Jim Mulvaney – How peer counselors use their own experiences to support those in the journey through grief (sevenponds.com)
• The only cure for grief is to grieve …. (jillsmentalhealthresources.wordpress.com)