Healing from perinatal loss

STILLBIRTH SUPPORT

Healing after loss...

Finding a "new normal"...

It may be a few weeks since you've experienced loss and you may still feel overwhelmed and heavy in grief. This is normal.

It is important to remember, however, grief can and will change over time. Sometimes it may feel heavy, other days you may be able to laugh or smile. The next few months may feel like a dance of one step forward, two steps back. This is normal….and frustrating! Here are ways we can support ourselves through loss as we navigate finding our “new normal”.

Avoiding triggers

Some triggers can be anticipated, and others surprise us at the most unfortunate time, in the most unfortunate of ways. It is important to give yourself grace and kindness as you figure out what is within your bandwidth or not. The first way to avoid triggers is by evaluating what we are digesting with our eyes and ears. This could mean:

Taking social media breaks
Declining invitations to baby showers, social events or kid-centric holidays
Avoiding television or movies that are particularly violent or intense or to avoid commercials for baby products
Keeping your baby’s belongings in a closed separate space to avoid contact
Shopping online to avoid baby aisles or kid products

Focusing on physical, emotional and spiritual healing

Many families return home with a short time off to physically and emotionally heal This amount of time can vary state by state and be based on personal circumstances. During this time, we encourage you to put YOU FIRST. We know some days it may feel like you can’t get out of bed. Or the thought of sunshine makes you angry. These are all normal.

But there are still some ways you can work on filling your cup and inspire healing. Even if you were to take one hour of your day to focus on yourself and your baby, you can find healing. These suggestions include:

Taking a brief walk - During your walk, keep a slow pace and acknowledge your feelings – warmth of the sun, softness of the breeze, the colors of the flowers…this will help with our circulation, moving stagnant heavy energy and put us back in contact with nature.
Listen to some music and journal – By expressing our feelings through writing or drawing, we can move some of those heavy emotions around and out of us. If the feelings are angry, let them be angry. If they are surprisingly soft, let them be soft. But get them out.
Meditation – There are several forms of meditation that don’t involve sitting on the floor tied up like a pretzel. Meditation focuses on centering the self, breathwork and finding stillness in the heart and mind. This can also help us process emotions or feelings of grief.
Get angry! – If you can’t work out the anger, get angry! We suggest taking a kick boxing or martial arts class that can help you channel that energy in a healthy way that promotes both physical and emotional healing.

Returning to work

Eventually, your new normal will include returning to the workplace. There are laws in place and many resources available to support your bereavement and return to work. Some employers may allow you to “phase” your return with a few days at a time, while others have Employee Assistance Programs available that offer mental health support and resources on how to manage work responsibilities. If you have access to union benefits, contact them prior to returning to work to see what special accommodations you may be eligible for.

The duality of pregnancy and infant loss...

Perinatal loss, or the death of a child shortly before or after birth, is an under-researched area of bereavement associated with high levels of complicated and disenfranchised grief. The term “disenfranchised grief” refers to “the grief that parents experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported such as miscarriage and the death of a child which is perhaps the most difficult human experience imaginable. Yet mourning without the support and acknowledgment of community pushes this experience even further into pain and suffering. Disenfranchised grief is confusing and further exacerbated by the lack of acknowledgment or validation of those closest to us. Additionally, what many people do not understand is that, yes, while the grief of losing our child is difficult, there are still moments of joy because of them. It can be hard to comprehend, especially when grieving, and that it is ok. It is normal to experience multiple emotions, even if they are opposites of each other.

For example…

My heart is full of sadness AND gratitude…The love we have for the child we have lost leaves an indelible mark on the parents forever. And while the grief of losing them can feel all consuming and overwhelming, we feel that same intensity in the love we have for them and gratitude for being their parent. Most loss parents will tell you – if the only way to have them is to lose them, we would still choose the experience anyway. And that is ok, even if the feeling doesn’t make sense. This is because the love for them is so special. Not all love stories get a happy ending. But it still doesn’t mean that love or happy can’t ever exist. Love is the foundation of our family building journey. Nothing can change that. And no matter how long or short of time we got to be their parent, we are grateful they chose us.

I am happy for you BUT sad for myself…Soon after the first few weeks of loss, parents are sobered by the fact that life continues on for everyone else even though ours came to a complete halt. Watching our loved one’s lives continue on can leave us feeling left behind or that we do not deserve to move forward (or even that you can find happiness and heal). Most loss parents will tell you – While we are truly and honestly happy to hear someone we know is pregnant, we are sad at the same time for ourselves. And that is ok. Feeling pressured to then publicly acknowledge or celebrate others is a reminder of each milestone we had/never had associated with our loss and can cause us to further isolate ourselves. We also don’t want to be a reminder to pregnant loved ones of what can happen; we want to protect you from our pain.

I love you BUT I am disappointed in you…One aspect of perinatal loss that NO ONE talks about is the loss of the relationships we had prior to our experience. While we understand our loved ones are also grieving, sometimes their actions/inactions, messages intending to support and general reactions to our experiences have a profound impact on our grief process and overall family building journey. Most loss parents will tell you - many times, generational influences, general lack of empathy and acknowledgment of our pain will feel unkind and leave us feeling alienated from those we used to go to for support. Often, the people who were once closest to us now seem like the last we would go to for comfort and support. Which adds another layer to the grief process, especially when the time comes to continue to a new pregnancy.

Finding support that works for you...

The support you need now may differ than what you need months or years from now. That is normal. Same goes for your partner and other loved ones. Below are some options to consider when you don’t know what support you need or even what to ask for.

Understanding the ebb and flow of grief

Returning home after being in the hospital can be bittersweet. We yearn to be home in our safe place, but at the same time, reminders of our baby are everywhere. Also, if you live with other family members, it can be hard to find peace to heal. This is normal.

For the first few months, you may feel like you are physically heavy and just going through the motions. It may be hard to find joy or keep a routine. That is ok. Also, it may feel a bit lonely as the calls, texts and messages from loved ones may seem to lessen and you realize that the world still goes on even if yours has stopped. It can take individuals or couples a varied amount of time to work through their grief. And just when they thought they were one step forward, they take two steps back. This is normal. There is no rule book to grief and how to handle it.

Please know, that over the first year or two, you may experience highs and lows and a lot of gray area in between. As time moves forward, we may feel stuck and unsure of the future. This is normal. The hardest part about healing is that we can’t see what that looks like when we are working through it.

As milestones from your pregnancy or your baby’s due date, or upcoming anniversary of their birth and death may approach, it is normal to want to avoid the calendar. For other families, they find a renewed sense of parenthood and being by finding way to honor and remember their baby that allows loved ones and family to participate where in the months prior, they may not have known how to help or approach the situation. But if a celebration doesn’t feel right for you. That is ok. You can always change your mind. Not every person feels the same way about their loss and that is ok. What matters is what is right or you.

Post-partum/mental health support

Upon discharge, your care provider should have provided you with a list of resources with phone numbers and website of mental health providers that specialize in grief and/or pregnancy and infant loss. Do not be afraid to use them! Those numbers go to national hotlines that have trained professionals that will listen to you, validate you, offer options and resources and remind you that you are not alone.

Southern New Jersey Perinatal Cooperative - The Cooperative is the state-licensed maternal and child health consortium which coordinates and supports maternal-fetal and newborn care throughout the seven-county region of Atlantic, Burlington, Camden, Cape May, Cumberland, Gloucester and Salem counties. Through the collaborative efforts of hospitals, public health agencies, universities, healthcare professionals and consumers, the Cooperative's activities are directed toward improving the health of pregnant and birthing individuals, infants and families and postpartum support.
Maternal Wellness Center in Hatboro, PA - Offers a Life After Loss Support Group, Parenting After Loss Support Group and Termination for Medical Reasons: Grief and Support Group.
The Center for Loss & Bereavement, Skippack Village, PA - Provides professional counseling, support services and education for families, individuals, and organizations dealing with loss and bereavement. The Center offers a warm and safe atmosphere that allows for the expression and exploration of those thoughts and emotions associated with the grief process.
Postpartum Support International - Search their database of licensed professional mental health providers to find someone near you.
Peter's Place - A Center for Grieving Children & Families. The Mission of Peter's Place is to provide safe and supportive environments for grieving children and families.

Finding support online

You can search the internet for other virtual or online groups that are more specific to your experience, for example, stillbirth vs. miscarriage, twin loss, termination for medical reasons, etc. We suggest googling your specific experience and the nearest local major city. In more rural areas, we suggest searching by the County you live. Additionally, you can check out the listing of birth and bereavement doulas on Stillbirthday.com. Navigate to the Find a Doula tab and you can find someone in your county or state that can possibly provide you with resources, peers or providers that can support you through loss immediately and post-partum. They may also have contacts that facilitate virtual or in-person support groups directly in your community.

Discussing your journey with others...

There comes a time when you will have to discuss your journey with others that are outside your inner circle. It is solely up to you as to what or how much you share and with whom. But we do encourage you to share! You don’t have to give all the gory details, but when you share your experience about your baby you are ultimately validating yourself and shattering the stigmas around the conversation of perinatal loss.

To share or not to share….

Answering dreaded questions - Well meaning acquaintances or strangers may spark up small talk and ask you if you have children, or if the child with you is your first or only. It can feel like a dagger in the heart having to answer in a split second, and honestly. We encourage you to answer the best way you can depending on the situation. Meaning, if it is comfortable for you to answer honestly, then do so. If it is easier to deflect the true answer, then we encourage you to reply with a short and sweet response. Please know, not acknowledging your loss with strangers is NOT a betrayal of your baby. Some days, it is simply survival.
Responding to unsolicited advice- Chances are when talking to someone about your baby or experience, they will fall silent and look at you like a deer in headlights or, they will tell you all about the experience of someone they know of or their own. Or, they may start throwing platitudes at you such as…”Everything happens for a reason”, “God has a plan” or “You can just have another one!”. While the people saying these things are not intending to hurt you, it only makes your experience more isolating. It is up to you if you want to point out their ignorance, or if depending who they are, if it is worth the fight. Sometimes, we just don’t have the energy. And that is ok.
Sharing on social media - Social media can be a blessing and a curse when postpartum and healing from loss. What was once fun for us has become a reminder that everyone has moved on, a pool of unexpected triggers and a constant reminder of what is NOT happening for us. On the other hand, there are many social media groups locally, regionally or nationally that focus on bringing grieving parents together to connect, share, validate each other and offer community. These are safe spaces you can share photos and your story where it will be received by others who “get it”. We also encourage families to share their story if and when comfortable with their friends or followers. If it doesn’t feel right for you to share there, then that is ok too.
Changing relationships/friendships - You may find that a friend that has been there for you through thick and thin suddenly feels distant or ignoring what has happened to you. Ironically, a former acquaintance or friend of a friend reaches out to offer condolences and you find them to be super easy to share with despite barely knowing each other. Or you may have always felt close to a parent or older loved one and now it seems as if they don’t even know how to talk to you. All of this, unfortunately, is normal. You may feel trepidatious to attend social events, family milestone events or holidays after your loss. Rooms that have been traditionally filled with joy and cheer feel foreign and our social battery is consistently near empty. It can be hard to socialize when you barely feel like a friend to yourself. But all you really want is a friend who can empathize. We cannot stress enough, the importance of finding a community of others walking similar journeys. Pregnancy and infant loss is a family event so it can alter the dynamics of even the most solid family to its core. Adding family through community can also help soften these blows as time moves on since others are experiencing it too. Not ready for in-person support? That is normal! Start at your own pace as a listener in our virtual support group or calls.

Comfort and support items...

Once you return home, you may feel like seeing your baby’s items or reminders of your pregnancy are too hard to handle. It is not uncommon for families to keep nursery doors closed indefinitely. However, as time moves on and your grief evolves, you may yearn to see or feel those items or have items that represent them in common spaces in your home. This is normal.

To soothe your aching arms…

Molly Bears - Check out Molly Bears, a non-profit organization that gifts weighted, personalized bears for parents who have experienced perinatal loss. They open registration for bears monthly. While these are free, parents will have to cover shipping and handling and they often times take months to be produced and ship.
Ollie Bears – Similar to Molly Bears, Three Little Birds offers a comfort bear to parents in our nest. This legacy project was developed by a local loss parent in memory of her son Oliver, who was stillborn. You can purchase a bear from our Etsy store which serves as a donation in your baby’s name. Check out our Etsy store to purchase!

Customized personal and cremation jewelry

There are websites that offer customized/personalized memorial jewelry that parent often buy to have something to wear/keep with them every day. Funeral home providers also offer catalogs of cremation jewelry that can hold a small amount of your baby’s remains. This is a very popular option for families who opt for cremation. There are so many options that can be personalized on Amazon, Etsy, from other major jewelers and by doing a Google search for "baby loss cremation jewelry".

Personalized vinyl decals

Some families, for various reasons, do not have an opportunity to meet or make memories with their baby. A mom in our nest went through a similar experience After she was discharged, she took her baby’s footprints, all that she had to remember her by, and created a decal for her car with her Cricut machine. Now, she produces these for all the parents in our nest and they have been used in really creative ways to make support and comfort items.

Framing photos for the home

If and when the time is right, we encourage you to frame or display any photos you take of your baby and family and create a small space in your home dedicated to them and their keepsakes. It can be a shelf in the living room, a spot on your nightstand next to your bed, or even opening the door to the nursery to see their things. Having these items near reminds us how much we love them, miss them and as we continue our family building journeys, it also helps us prepare for difficult conversations as their siblings grow.

Perinatal Loss Door Signs

Learning to set boundaries after loss can be hard. These door signs can be used at the hospital and at home to let visitors know if you are up for company or not.