MARKING MILESTONES AS AN ACCRETA SURVIVOR

written by Joree Novotny, JULY 2022

I recently celebrated my only child’s 4th birthday. That word - celebrate - is a tool I use to frame my approach to what is his day, but not so much a reflection of my feelings. After I needed a life-saving hysterectomy due to Placenta Accreta Spectrum (PAS) in my first and only pregnancy, milestones like this have somehow been both emotionally fraught and fulfilling, sometimes in the same moment or breath. I’m sure that dynamic rings true for any parent watching their child growing up to a certain extent. But members of our accreta community navigate these markers on two timelines, one that follows their child’s life and one that follows their post-accreta journey.

In the support groups facilitated by the National Accreta Foundation, members often share their feelings about these benchmark moments with one another, seeking solidarity and just to feel seen by a network of survivors that understand. Many of the examples and suggestions shared below have been crowdsourced from these very spaces. So, before any other advice, I would recommend you get connected to one or more support groups that fit your needs if you’re not already. There are moderated, closed groups designed for every experience along the spectrum. You can search past posts to glean more suggestions, relatable reflections and meditations, and more from fellow survivors. 

Ways to recognize your ‘survivor’versary or anniversary of your traumatic pregnancy event or near-miss

As a survivor of a serious, high-risk pregnancy condition, you may have experienced birth trauma or complications as part of the care needed to treat your accreta safely. Some accreta patients experience significant blood loss or hemorrhage, or require a hysterectomy to surgically remove their uterus (and placenta) and/or need other intervention(s) so that they and their babies can survive delivery. Memories of those near-miss experiences, in addition to the lingering postpartum physical and mental health issues stemming from your accreta, can sometimes be particularly triggering leading up to and on the anniversary of your accreta delivery.

Here are some suggestions our community recommends for navigating this date in a way that meets your needs:

• Honor your care team through a gift, lunch, or a heartfelt letter, like this tribute by Accreta Experience Series contributor Bethany Harrison.

• Make a monetary donation in honor of your care team - you can consider sponsoring National Accreta Foundation Patient Support Kits or Accreta Awareness Kits to be sent directly to their hospital.

• Host a fundraiser to support the National Accreta Foundation’s mission to eliminate preventable maternal mortality and severe maternal morbidity attributable to placenta accreta, like Jennifer Baumgardner, who raised more than $500 in honor of her accreta baby’s first birthday and her accreta-versary.

• Donate blood to pay it forward in recognition of the blood donors that helped save your life - learn more about how to get started from these basic blood donation tips.

• Organize a blood drive to get more family, friends, and community members involved in blood donation and to spread accreta awareness, like Abby Bar-Lev Wiley (pictured at top), who planned a blood drive to celebrate her accreta baby’s first birthday.

• Share your story, by talking with friends, submitting your story to the National Accreta Foundation story bank, or by raising awareness about accreta in other ways, like my reflection about family size that was published in a New York Times parenting newsletter article.

• Create a space to celebrate your life, like with a brunch or night out with friends, a spa day to yourself, or a long nature hike.

• Get a commemorative tattoo, a popular way among the accreta community to mark your journey as an accreta survivor.

• Gift yourself some new Accreta Strong gear to show your survivor pride.

Acknowledging milestones when you lost the chance to have more kids while welcoming your accreta baby

Let’s be honest - it’s not always as simple as celebrating your accreta baby’s birthday when that day also represents the loss of future pregnancies. Our community recommends leaning into the reality that this can be a complicated milestone. Instead of letting your feelings of loss or grief detract from their birthday, find a way to add a layer of extra celebration or solitude, whatever your spirit needs. Here are some options to consider:

• Make a monetary donation in honor of your accreta baby and/or their NICU care team.

• Capture some special photos with you and your accreta baby, perhaps in matching National Accreta Foundation gear, including this #StrongLikeMom onesie. You can also mark other milestones in your journey this way - for example, if you had a tumultuous path to breastfeeding like I did because of your traumatic birth and being separated from your newborn, you might choose to commemorate the end of your breastfeeding journey through photos or through a piece of breastmilk jewelry.

• Gift yourself a piece of jewelry with your child(ren)’s birthstone(s), to help you on your journey to acceptance of your family size. 

• Commission a work of art to symbolize how you want to remember and grow from your experience, like the painting that accreta survivor Lindsey Bradford-Moore commissioned from artist Anne Von Ehr to represent her family, her infertility battles, and the strength surrounding that and her accreta pregnancy (pictured).

• Go big for your accreta baby’s birthday, like taking a family vacation to Disney.

• Set aside space to grieve, to process, and to sit with your complex emotions. Consider journaling, attending a local yoga class (or a free online class), visiting a place of worship to pray or a peaceful spot in nature to meditate, or simply indulge in something carefree and fun for a healthy distraction, like an hour of rock climbing or an art class.

• Treat yourself to something simple to celebrate your strength in your own way, like a bouquet of your favorite flowers or an item to add to a collection you keep as the years pass.

As I approached my son’s 4th birthday, I felt an enormous sense of growth away from my grief and into a place of gratitude - but it took intentional efforts at healing and processing, allowing space for my feelings, and being in community with other accreta survivors to get here. While his birthday did still draw out traumatic memories and well-buried resentment to the surface for a while, I have reached a place where I can look back on years of milestones in his life and my trajectory as his #accretastrong mom and focus on joy.

For those of you reading this who are closer to the start of your recovery, or who are struggling to make the progress you hope for in your healing, you can do this. Take it one milestone at a time, and we will be right here, celebrating with you and rooting you on.

Marking milestones when you experienced infant or pregnancy loss due to accreta

We want you to know that you are not forgotten or alone. The National Accreta Foundation moderates a safe, closed Infant and Pregnancy Loss with Accreta or Previa support group, a community where you can find solidarity in navigating your experience, including milestones and anniversaries.

Accreta survivor Stephanie Liuzzo had a stillborn daughter at 36 weeks. Each year, she celebrates her accreta angel, Hope Marie, with her family with a balloon send-off and a visit to her in the cemetery. 

Other resources:

• Share, a national pregnancy and infant loss support center that offers, among other resources, free memorial events to continue to love, honor, and remember lost babies and pregnancies.

• Plant a Tree, a way to honor and commemorate loved ones in a time-honored tradition from Israel that is symbolic and heartfelt, organized by the Children’s Bereavement Center

• Star Legacy Foundation, which offers memorial pages for families that have experienced perinatal loss and want a place to share their story, images, or related information with friends and family.

You may also like:

National Accreta Foundation is entirely volunteer staffed and donation funded. If you find our content of value, please consider making a tax-deductible donation to help us continue this work.