Pregnancy and Infant Loss Awareness Month 2024: Elizabeth O’Donnell
“The root of Aaliyah in Action was needing to find meaning for myself post-loss. The mental health impact that this takes is huge. In full transparency, I needed a reason to keep being here.
At the time, I did not know anybody that had had a stillbirth. [A] lot of my friends and family had sent me little self-care items because that's very much who I am. I found that using one or two items each day literally allowed me to feel something, when I felt so numb. I just wanted to extend that to absolutely anybody that is going back home, going back to work, going back to a society that feels so different than before this life-changing news.”
Elizabeth O'Donnell is the founder of Aaliyah in Action, a nonprofit providing bereavement support to families experiencing baby loss. She is pursuing a Master of Public Health at George Washington University and also serves as a founding member of, and Director at, PUSH for Empowered Pregnancy, where she advocates for improved maternal care through the lens of stillbirth prevention.
Passionate about policy change for those who have experienced perinatal loss, Elizabeth is a dedicated advocate for paid family leave after stillbirth, working to ensure families receive the support they deserve during such critical times. Her efforts in Washington D.C. led to the updating of their PFL policy, to include stillbirth, in 2021.
This blog is made possible by a sponsorship from Sage Therapeutics, Inc. and Biogen Inc. All content on this page has been curated by the Mass. PPD Fund without input from Sage Therapeutics, Inc. or Biogen Inc.
October 2024 | Interviewed and edited by Jessie Colbert, Executive Director, Mass. PPD Fund
To recognize Pregnancy and Infant Loss Awareness Month, the Mass. PPD Fund is honored to share a conversation with Liz O’Donnell, Founder of Aaliyah in Action. After the stillbirth of her daughter Aaliyah in 2020, Liz founded the nonprofit to provide comfort and support to other parents facing similar losses. Specifically, Aaliyah in Action provides self-care packages to grieving parents nationwide and beyond as “a gentle hug from someone who knows the pain,” including items like tea, candles, and skincare products, as well as books and other information and support resources.
We talked about how Aaliyah in Action got started, and some of the challenges Liz faced navigating unfriendly systems on her grief journey. She also shared the policies and practices she’d like to see around grief and loss, including fairer leave policies, better training for providers on the issue, and ensuring pregnancy and infant loss is part of all conversations on maternal health and mental health. Liz also shared why Aaliyah in Action’s packages aren’t gifts, they’re support that can get parents through some of their darkest days after a loss.
I’m really honored to connect with you about your important work supporting families facing pregnancy and infant loss. Can you share your story, and how Aaliyah in Action got started?
The root of it was needing to find meaning for myself post-loss. The mental health impact that this takes is huge. In full transparency, I needed a reason to keep being here. Being an educator, my first go-to is always to help other people. At the time, I did not know anybody in my immediate friends or family that had had a stillbirth. When I started learning about how many people this is happening to, I felt called to do something.
While the treatment that we received in the hospital was absolutely the best, no one prepares you for what it’s like when you get home. For us, it was a home with diapers everywhere, because the baby shower had been a couple weeks before, the nursery was all set up. My hospital bag actually was in the hallway ready to go.
So I saw a need there, and at the same time, a lot of my friends and family had sent me little self-care items because that's very much who I am. I found that using one or two items each day literally allowed me to feel something, when I felt so numb. I'm very fortunate that I have supportive friends and family, and I just wanted to extend that to absolutely anybody that is going back home, going back to work, going back to a society that feels so different than before this life-changing news.
Also, in the hospital there's a lot of focus on memory-making for the baby [photos, keepsakes like footprints or the baby’s ID bracelet], but I could not look at that memory box for quite some time. I'm extremely grateful that I have it all now, but I needed something just for me. That’s what makes the resource that Aaliyah in Action provides a little bit different. I always make a “griefy” joke: It's not all about the baby. It's really just for the person that needs to make it tomorrow and figure out what that looks like for them.
That makes a ton of sense, thank you for sharing. What are your goals for the organization going forward?
We’re partnered with about 70 hospitals, birth centers and other nonprofits that folks might be turning to after loss for support. We are coast to coast, I have even shipped to other countries – Canada, England, Jamaica. I think my number one priority – like every nonprofit – is funding. But specifically, I want the hospitals and birth centers that receive these packages to truly understand their value, and want to prioritize that for families that experience loss, until we figure out how to stop this from happening at the rate that it does.
The reality is it's occurring in every hospital, and yet it is the least budgeted for, it's the least focused on. Staff are not educated in how to properly interact and communicate with families. So [our goals are] continuing to provide packages to our partners, being in a financial situation where we can continue to add partners, but within that, having people fully understand the program. It’s not just a nice thing to give a parent, but a mental health resource for when they need to reenter society a completely different person. We can never fully heal from this, but we need to be properly set off on our grief journey.
As a teacher, I'm really big on differentiating for my students, depending on what they need. We're very unique in that we provide something tangible, and our partner Chasing the Rainbows does all the support groups. We really try to let the recipient figure out: maybe reading this book [in the package] works today, but maybe tomorrow I want to jump on a support group call. Maybe I'm just going to be on the couch using some products, and that's going to be my self-care day. Everybody grieves differently, and they're going to need something different depending on the day.
Definitely. I really appreciate how you frame your self-care packages as “a gentle hug from someone who knows the pain.” Can you share more about why the package contents are meaningful to you and the people who receive them?
When I was in the hospital, I did not have anybody that I could reach out to that I knew had experienced this. I went on Instagram, and I'm hash tagging baby loss, pregnancy loss. I needed to go search for that, and it is already hard enough! I wanted to just already be there [for people and show them] I know exactly what you're feeling, here is this resource.
I’ve had healthcare providers push back on our program because it's too “gifty.” And that is very, very upsetting to me, because as a loss mom, I still don't feel worthy of receiving gifts. One of my whole focus points is that this is not a gift, it’s a support. This is to help you on very, very dark days; it's not going to make you feel better, it’s just going to push you through. If you're sitting on your couch and you're crying and your face is red and swollen, put on a face mask and take a couple deep breaths. That item and that action is going to help you in that moment.
I know you’ve also gotten involved in policy work – can you share more about that?
When I had to tell my school district about what happened, I thought [they would] give me the minimum amount of weeks to heal my body, and then I'd be back. It was a shock when I was told my leave was being revoked, that it was only considered labor and delivery if a living child came at the end. I want to note that in Washington, DC, we are very fortunate we have Paid Family Leave – I’m so grateful that we offer that – but there was a misstep in not writing it to cover all families. What a blessing for the people writing it, that this was so far from their mind! [Pregnancy and infant loss] was simply left out.
I was very hesitant about going public with what was happening, but I was just so angry that people were making it sound like I did not have a baby. I posted a picture of me holding Aaliyah, and it traveled like wildfire. I didn't have a big social media following or anything, but it got to a lot of very important people. And the DC Council acknowledged the lack of recognition for families who experience a stillbirth and passed an emergency bereavement bill. That bill is still active for families that lose a child under the age of 21.
In October of 2021, the DC Paid Family Leave legislation was also amended to include stillbirth. When I went public, I was shocked by how many people, including teachers, were reaching out saying the same thing happened to them, but they just couldn't fight it – it was just easier to suck it up and go back to work. I could not do that; I couldn't take somebody invalidating my daughter. So I am very happy that they amended it, it comforts me to know that another parent in my situation will not be met with such a harsh and cool response.
This is so important, thank you. And you’ve worked nationally, too, right?
Because my story had traveled from coast to coast, I had a lot of people reaching out to me saying, How did you do that? The same thing happened to me, but I don't know where to start. Minnesota has been hard at work on amending their PFL, there has been a huge push to amend New York as well.
If you're in a state that does not have Paid Family Leave, I would encourage you to talk to your employer [about expanding company leave policies to cover stillbirth]. A lot of times we hear that our leave just cannot be processed because we don't have a birth certificate. I have spoken to mothers who have lost a baby in the NICU and are told that they have to come back to work because they don't have a baby to bond with. You know, change the definition of things! All it takes is a little bit of compassion and empathy.
If I had been shown just a little bit of compassion, I would have come back the same teacher I was when I left. I would have felt valued, and I would have wanted to give back when I was in a better place. Instead, they’ve lost a good teacher. [Liz left her position.] Employers should want to be keeping good people, and this is a small way to do it during the most challenging time in someone's life.
Do you feel like loss is missing from the maternal mental health conversation? How can we do better?
I am shocked by how absent the discussion of loss is in perinatal mental health. For those pregnant after loss, after a stillbirth, or for those that have had multiple miscarriages and are pregnant again, the mental toll that that takes on a person is so great. For that to not be a huge piece of the conversation makes no sense. I mean, when you look at statistics about women who have experienced this taking their own life, the severe impact it has on relationships, on jobs, on finances – all of that comes back to our mental health.
Asking questions to those with lived experience is an excellent start. If we're trying to find help and there is none, then to us, we are the problem, and that's when the guilt and the self-blame starts building up even more. We have to have it in almost every conversation. I'm also really shocked at how many providers and those in the maternal health space do not acknowledge that women who have experienced a stillbirth can still have postpartum depression.
It seems like people just don’t want to go there. Maybe they’re afraid of such a difficult and painful topic?
I feel like it's because there is a lack of education – in nursing, for medical providers, even for mental health professionals. And the information that is out there isn't always created by the people with lived experience, so it's a little bit out of touch. There are lots of people like me that are talking about these things, but if you don't have a fancy degree, you're not really taken as seriously. I'm getting a Master's of Public Health, just because I am hoping that that elevates what other people in this space think of me. I shouldn't have to do that, but I'm very grateful that I'm in a position where I can, and it's helping me make stronger arguments for families.
People are just so afraid to talk about it because they don't want to upset people or say the wrong thing, or they don't want to bring back traumatic memories. But you're going to say the wrong thing if there’s a lack of education on how to properly communicate with individuals who have experienced this. I've made a presentation on how to strengthen communication with bereaved parents, and I do it 100% through the lens of lived experience.
Since you’re such a product expert, can you share your current favorite skincare product or routine?
I love a red-light mask. They're not even that expensive, but it's great for your skin, and it also helps with mood. So you kind of get a twofer with that one! But really, just anything that is creating a calm and serene environment. I've always been a skincare and makeup girly, but post Aaliyah, I've really had to figure out how to wake up every day with intention, and how to go to sleep every night wanting to wake up with that intention. Anyone who understands loss will totally get this. Sometimes after experiencing this, you just don't feel normal anymore. I don't think that's ever going to go away, so I've kind of accepted that, and now I'm just trying to set up situations for myself to help motivate me to keep going.
Aaliyah in Action relies on the generosity of its donors to continue the mission of supporting bereaved families. Donors have allowed us to provide over 2,000 packages to families who have experienced baby loss. Please, share Aaliyah in Action with a friend and consider making a contribution in support of our mission - we cannot do this work without you.