Inside the Survivor’s Guide
Common Challenges Survivors Face
You Are Not Alone: Understanding the Emotional Challenges of AFE Survivors
Many AFE survivors have shared the vast and complex emotions surrounding their AFE experience and report feelings of isolation, confusion, grief, survivor guilt, and trouble accepting their new bodies and health challenges. We have identified and compiled the most common challenges many in our community have expressed and hope to show you that if you too are feeling them, you are not alone. If you have not joined one of our support groups, consider joining our groups as these topics are regularly discussed.
Common Challenges and Learning to Cope
Delayed Bonding
Delayed bonding is common for moms who have experienced a traumatic birth. There is nothing wrong with you if you don’t feel bonded to your baby right away. Give yourself grace, compassion, and time. As you heal yourself, the bond will follow. It will not be this way forever.
Ways to help and encourage bonding:
- Skin-to-skin contact with your baby such as bath time together, applying lotion, snuggling
- Being involved in the baby’s care as you are physically able to
- Research shows that as a mom’s mental health is supported, she is better able to bond with her baby
- Share with your spouse/partner and family that delayed bonding is common in traumatic births.
- Discuss ways or develop a plan to help bond with your baby.
Not Being Able To Care For Your Child/Children
Many AFE survivors may not be able to care for their children immediately due to health issues, both physical and mental, affecting either the mom or the baby. It can be tough to watch others care for your baby or children, and you might feel mixed emotions—gratitude for their help, but also anger or sadness that you’re not the one providing the care.
Sharing your feelings with those who are caring for your baby or children can help them understand what you’re going through. This also opens the door for finding ways to involve you when you’re ready.
Feeding Your Baby
What you may feel about feeding your baby
- Anxiety: Is there enough? Is it the right type of formula? Will my baby miss out on health benefits if I choose or am forced to feed a certain way? There are several sources you can talk about with these concerns. You can ask the neonatal nursing department at your hospital. Or your OB provider can ask about lactation consultants. There are sometimes community-based groups in your area that can support you.
- Grief: You may have decided to breastfeed your baby and are unable to do so as a result of your AFE. This may feel like another loss, compounding all you’ve lost due to your traumatic birth experience. It is natural to grieve this loss. You may experience mixed emotions of both sadness and relief.
- Envy: It can be difficult to see others who experience less challenging feeding journeys with their infants. It is natural to feel envious because you were not able to experience the same. It does not mean that you wish their feeding journey was more challenging. It means you are emotional about your own experience.
- Failure: Often, birth trauma survivors feel that their bodies failed them. Being unable to breastfeed is another component of that failure. You did not fail, you are doing the best you can with what you have. Your body just survived an often fatal complication, and it’s doing all it can for you and your baby.
- Physical Discomfort: Physical Discomfort: AFE survivors often need ongoing medical intervention. Including but not limited to drains, tubes, incisions, dialysis, etc. You may be experiencing physical pain from the AFE. It is okay if the discomfort of breastfeeding is too much to add to your existing pain. Your body needs to heal, and you may need to change your approach to feeding to allow that healing to happen.
Read Women’s breastfeeding experiences following a significant primary postpartum haemorrhage.
Conflicting Feelings
Conflicting feelings are common after any traumatic event. Everyone responds differently to experiencing a life-threatening complication of pregnancy, like an AFE. It is common to have a wide range of emotions, including conflicting emotions.
- You may feel grateful to be alive but so angry and sad that this happened to you.
- You may feel betrayed by your body following pregnancy loss while valuing its ability to heal after an AFE.
- Feeling sad or angry about your birth experience does not mean that you are not grateful.
Coping with conflicting feelings:
- Give yourself time to grieve the birth experience that you thought you would have.
- Honor your gratitude, but try not to use it to avoid your feelings of grief.
- Remind yourself that feeling sad or angry does not mean that you’re ungrateful.
Fertility
Fertility is a common concern for AFE survivors who do not need a hysterectomy. The concern of fertility due to procedures and or physical trauma as a result of the AFE is normal. Below are some suggestions for learning more about fertility after an AFE.
- Make an appointment with your OBGYN, or the OBGYN involved in your AFE, to understand your AFE event. Ask for their opinion about the risks or concerns with future pregnancies for your specific medical history.
- Consult with a Maternal-Fetal Medicine specialist for a risk assessment of future pregnancies.
- Join the Pregnancy after AFE Facebook Support Group to learn how others have explored future pregnancies.
- Make an appointment with a mental health provider to learn (or review) effective tools. They can help you to navigate the anxiety that comes along with pregnancy post-AFE.
Survivor guilt
Survivor guilt is a condition of mental and emotional stress, experienced by someone who has survived an incident in which others died.
It is common for AFE survivors to feel varying degrees of survivor’s guilt. You may question, “Why me? Why not me? Or, what if?” You may feel undeserving of your survival.
Give yourself patience and time to work through these thoughts and feelings. While loved ones are supportive and well-intentioned, they may not know how to respond. They may offer platitudes such as “Everything happens for a reason”, or “Just focus on being grateful”. You may feel gratitude and guilt at the same time. Consider some of the following ways to shift your thinking:
- Seek professional help
- Connect with AFE survivors
Establish a personal mantra to call on when you begin to feel guilt. Some examples include:
- “I acknowledge these feelings and offer myself grace and compassion.”
- “This is not easy, but I am worthy of living.”
Read How to Cope with Survivor Guilt, Because Survival Is No Reason to Feel Guilty
Significant Days
- Make a plan in advance for what the day will look like.
- Communicate your needs for that time to your loved ones.
- Give yourself the space and time to feel your emotions. These emotions may be present leading up to and after dates of significance to you.
- Try to separate the birthday from the “survivor day”. This gives you that space to grieve while having a separate day to celebrate your little one.
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- This “survivor day” celebration can look like spending a day doing the things that feel good to you. Maybe a massage, a hike, journaling, reflecting, looking at photos, or a coffee shop visit.
Common Triggers
The word trigger has become commonplace. For those who have experienced a life-threatening situation, trauma triggers are real. They can cause a physical and emotional response. While triggers are unique to each person, they include anything that reminds you of your traumatic event. Significant dates and medical appointments can cause triggers. There are other common triggers for AFE survivors which can include:
- Seeing pregnant women, close friends, family members, or even strangers
- Baby showers/gender reveal parties
- Birth, gender, or pregnancy announcements
- Hearing other’s birth stories
- Smells or sounds
It’s important to remember that feelings of jealousy, anger, and sadness are valid. Experiencing these emotions when you see someone pregnant doesn’t mean you wish for someone else to go through a traumatic birth—it means you wish you hadn’t. You can be happy for others (or not) and still feel sad for yourself; both feelings can exist at the same time. There’s no need to feel ashamed of these reactions, as they are normal. Recognize them for what they are and allow yourself the space to process them.
- Journal about these feelings
- Talk to a trusted person about these feelings.
- Remind yourself that you’re having a normal reaction to an extraordinary event.
- Create boundaries around conversations and social media as needed.
Approaching Conversations In Commonly Triggering Situations
A good friend/family member announces their pregnancy:
Transparent conversations can be really helpful in situations with loved ones who have children or are pregnant. It can feel like there’s an elephant in the room. Speaking straight to that elephant can relieve tension and prevent distancing in a relationship you care about. An example of this is:
- “Hey, I just wanted to talk with you and be transparent about what I’m going through. I don’t want it to negatively affect our relationship. Since my birth, I’ve struggled, and things that remind me of it are difficult. I want to be able to support you in your pregnancy. I also want to acknowledge that it brings up a lot of feelings for me. This has nothing to do with you and everything to do with me. I just want to have this out in the open so that we can continue to have these chats as things come up. I care about our friendship.”
A good friend/family member invites you to their baby shower:
- “I would love to support you in your pregnancy, but a baby shower is too overwhelming for me right now. Do you think we could grab a coffee instead?”
A good friend/family member wants to share their positive birth story with you:
- “I am so happy for you that your birth went well. I’m just not currently in the headspace to hear about birth stories. Can we hold off until I’ve done a bit more healing? Then I will be excited to hear about it.”
Intimacy
The physical pain of intercourse and the trauma of an AFE can leave you feeling disconnected. Many AFE survivors experience fear or anxiety related to intimacy, often due to concerns about painful intercourse. These feelings can also arise from reminders of the trauma, fear of becoming pregnant again, or sadness about not being able to conceive.
- If you are experiencing pain during intercourse, visit your healthcare provider. They may recommend pelvic floor physical therapy.
- Establish clear communication with your partner around boundaries, fears, etc.
- Try therapeutic services like couples or sex therapy.
- Experiment with non-sexual forms of intimacy.
With time and treatment, most experience relief.
Relationships
Having a baby adds stress to any relationship, and this stress can be even greater when there’s been a traumatic birth. Partners may experience the AFE event differently, leading to complex emotions and potential conflicts. You’re both dealing with the trauma in your own ways while trying to care for a newborn or cope with the loss of your baby. Seeking therapy can help address the impact of this trauma on your relationship and family. Be gentle with yourselves—you’ve been through an incredible ordeal, and healing will take time.
Resources to assist with relationship stress post-trauma:
- Be quiet and man up: a qualitative questionnaire study into fathers who witnessed their Partner’s birth trauma
- A systematic review and meta-synthesis of the impact of becoming parents on the couple relationship
- The impact of childbirth-related post-traumatic stress on a couple’s relationship: a systematic review and meta-synthesis
Managing New Medications
You may come home from the hospital with several new medications. Taking a new medication may create:
- Lifestyle changes
- Unwanted side effects
- Dietary changes or restrictions
- Nursing interruption
Common medications prescribed after an AFE are to treat a variety of conditions. This can be pain, blood clots, blood pressure, heart, kidney, digestive function, depression, and anxiety. Some medications can be short-term or long-term.
We recommend getting your medications filled at one pharmacy and establishing a relationship with the pharmacist.
When recovering from a critical illness it can be difficult to remember when you took your medication. Consider purchasing a daily pill box and filling the box each week. Or, use a medication log for a few months until you get into a routine. Take your medications at specific easy to remember times, like when brushing your teeth or with a meal.
- Many apps for medication management offer reminders and drug interaction information.
- If your medications impact your diet, consider a registered dietician to help with adjustments.
- You and a trusted family member should read all of the medication’s side effects and know when you should call your doctor.
- Insurance may sometimes deny a brand-name medication. You can ask for an appeal or ask your doctor for a generic option.
- Keep in touch with the prescribing doctor to report any side effects.
Managing Anxiety Related To Your Baby’s Health
Mothers who experience a traumatic birth may worry about the long-term impact it may have on their baby. Have a conversation with your child’s pediatrician about what you both experienced. Consider asking for additional time at these appointments. You can request a referral for the Special Infant Care Clinic (SICC) if your child qualifies.
If you don’t have an established pediatrician, be sure you ask for additional time with each appointment. Consider writing down a brief version of your birth story to take with you to the appointment.
If your anxiety related to your baby’s health feels overwhelming, speak with your healthcare provider. To learn more visit our section on Mental Health after an AFE.
Talking About Your Trauma Experience
It can be difficult to talk through your traumatic birth experience when asked about it. Here are a few suggested responses to explain what happened:
- Minimal: “I had a complicated birth that was really scary/traumatic/life-threatening.”
- Detailed: “I had an amniotic fluid embolism during birth, which is a rare but devastating complication. I was really lucky to make it out alive.”
- For more detail: you can first acknowledge that what you went through was scary and traumatic and then explain that you’re open to sharing about it if they want to hear.
One and Done - Is this going to be your only child?
- “We had a complicated traumatic birth and therefore it is not advised that we have more children.”
- “I’m not able to have any more children because I required a hysterectomy during our first child’s birth.”
- “I’m not able to have any more children.”
Inside the Guide
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