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Inside the Survivor’s Guide
Physical Complications After an AFE

Understanding the Physical Complications After an AFE

Recovering from an Amniotic Fluid Embolism (AFE) can bring a variety of physical, emotional, and mental challenges. Survivors often face complex health concerns, including changes to their bodies, cognitive struggles, gastrointestinal issues, and emotional scars. Below, you will find a list of physical challenges many AFE survivors have reported. 

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AFE Survivor Guide offering important information and resources to aid AFE Survivors in navigating their physical and emotional health after an amniotic fluid embolism.

Physical Complications After An AFE

Recovering from an Amniotic Fluid Embolism (AFE) can bring a variety of physical, emotional, and mental challenges. Survivors often face complex health concerns, including changes to their body, cognitive struggles, gastrointestinal issues, and emotional scars. This journey is not just about physical recovery—it’s about redefining relationships with your body, embracing healing, and finding strength after a traumatic experience.

You might feel like your body failed you because your birth experience didn’t go as planned. It’s okay to have these feelings. It’s challenging to accept that your body didn’t birth the way society tells us it was “meant to.” It’s common to have mixed emotions about your body—you may feel betrayed by it after pregnancy or infant loss, yet also appreciate its ability to heal after an AFE. Your body did incredible things to keep you alive. You can appreciate that you’re here because of your body, even if you don’t completely love it. This perspective, known as body neutrality, can be a helpful way to reframe your thoughts after a traumatic birth. After an AFE, your body will likely look and feel different. Not only are you postpartum, but you may also have scars and marks from the AFE. These can be difficult to accept because they are physical reminders of what happened. It may take time to get used to and accept your new body after an AFE. Here are some affirmations that may help as you move through this stage of healing.  
  • “I am so much more than my body.”
  • “My body did the best it could so that I could be here today.”
  • “I deserve to enjoy myself.”
  • “My body deserves respect for everything it’s been through.”
  • “My body deserves respect for everything it continues to provide for me.”
  • “My body is an instrument, not an ornament.”
Many postpartum women and trauma survivors experience symptoms of “brain fog”. Brain fog is a common term that suggests a feeling of mental fatigue or the inability to think clearly. It can occur if you have chronic stress or fatigue, PTSD, or have had a recent traumatic experience. Brain Fog Symptoms
  • “spacing out” or being unable to focus
  • feeling disconnected from your surroundings
  • forgetfulness
  • trouble keeping up with conversations
  • a short attention span
  • losing your train of thought
  • feeling disoriented
Solutions for Brain Fog Symptoms
  • Follow a nutrient-dense diet with whole grains, fruits, and vegetables, and eliminate processed foods. There is research that suggests following a Mediterranean-style diet may help to correct brain fog symptoms.
  • Improve sleep patterns
  • Exercise
  • Therapy to help with PTSD symptoms.
When is Brain Fog Considered Serious Brain fog is considered serious when it interferes with your daily life or routine. You should contact your healthcare provider if you feel it is getting worse or experience the following:
  • Affects your ability to complete tasks
  • Causes you to forget appointments
  • Makes it hard to pay attention
  • Causes you to get lost often
  • Causes your memory to worsen
  • Doesn’t improve with self-care
  • Is frequent
  • Causes you anxiety

An AFE can affect any of your organs including your digestive system. Many survivors report gastrointestinal issues. Here are just some of the things that can affect your digestive system:

  • Losing large amounts of blood
  • Blood transfusions
  • Long periods without food
  • Major abdominal surgery
  • Hospitalizations

Vaginal birth can affect your pelvic floor, causing incontinence. Pregnancy hormones can affect your pancreas, causing pancreatitis.

There are no studies to link specific GI conditions to an AFE. However, survivors have reported new food sensitivities or allergies. Constipation can happen due to scar tissue or trauma to your abdominal wall. You may not be able to pass stool like you did previously.

If you were on tube feeding or IV nutrition in the ICU, you may struggle with adapting to solid food again. Some survivors have reported conditions like IBS as an ongoing diagnosis. In addition to your ICU stay, CDI (previously known as C. Diff) can happen when you are over-treated with antibiotics.

It’s important to see a Gastroenterologist if you are experiencing these symptoms after an AFE. These can be alarm signs of bigger issues, like blood in your stool or the inability to keep food down. You may find that your healthcare professional may not think an AFE is to blame for your current symptoms. You might need to search for a physician who can listen to your history to help navigate your path forward.

Watch our webinar series with medical experts to discuss the various impacts an AFE can have on your digestive system.

Webinar Recordings

Postpartum hair loss is a common condition that occurs about three months after childbirth and can last up to six months. It’s a normal part of pregnancy and is only temporary. For most people, your hair will grow back to its original fullness. Some AFE survivors may experience acute Telogen Effluvium, excessive thinning, as a result of physical and emotional trauma from your AFE. Make sure to speak with your doctor if you think the hair loss is more than normal or if it is causing you to feel anxious, isolated, or have low self-esteem. 

There are various ways to manage hair loss such as over-the-counter medications, supplements, changing your hairstyle, or wearing headbands, hats, or wigs. 

Types of Hysterectomy Procedures

  • Supracervical/Partial Hysterectomy – the uterus is removed but the cervix remains intact. You can still experience some periods with a partial hysterectomy. There may be endometrial lining left behind in your cervix.
  • Total Hysterectomy – when the uterus and cervix are both removed.
  • Oophorectomy – when one or both ovaries are removed.


Hormonal Cycle
If you have one or both ovaries, your hormones should not be interrupted. Your hormonal cycle will continue. You should not enter into early menopause. Because you have a hormonal cycle, you may also experience the same symptoms of a period. This can be triggering, as it’s often a reminder of a time before your hysterectomy. It can sometimes even be a reminder of when you were pregnant.

Mental Health and Hysterectomy
Losing your ability to carry more children after surviving an AFE is devastating. There is nothing that will take away this grief. It will be something you carry with you, but it will change in its shape and intensity. You may often grieve the children you didn’t get to have and the choices you didn’t get to make.

It can feel difficult knowing that this birth experience will be your last, that there is no redemption, no re-do. You need and deserve the space to grieve this loss, regardless of the number of children you have. You can be grateful and grieving at the same time.

Growing your family post-hysterectomy does not replace your ability to carry more children.

Coping skills such as grounding, breathing, and bilateral stimulation can help when feeling overwhelmed.

Support group on Facebook for AFE Survivors Requiring a Hysterectomy.

Intimacy after Hysterectomy

Visit HysterSisters for more information on Post Hysterectomy Intimacy 

Helpful responses to difficult conversations after a hysterectomy

When someone asks, “When are you going to have another child?”:

  • “I am no longer able to have any children.”
  • “That’s no longer an option for my family”
  • “I don’t typically discuss our family planning choices with others.”

When someone says, “Well, at least you can adopt or try surrogacy.”:

  • “The grief of no longer having the option to carry my children is completely separate from the choice to consider alternatives for growing our family.”
  • “Even if those options are available to me, it doesn’t take away my grief of losing my uterus and ability to carry future children.”

Watch a conversation with expert OBGYN and surgeon Dr. Kimberly Suriano, discussing the physical and mental health impacts of a hysterectomy related to an AFE.

ICU delirium is a common occurrence, especially among AFE survivors who have undergone ECMO or prolonged sedation. This condition can cause hallucinations or delusions, leading to fear, confusion, and difficulty in thinking or speaking clearly. The effects can be long-lasting, with some individuals experiencing anxiety or depression well after discharge. For more information, explore the resources:

 

For many who experience an emergency c-section, planned c-sections, or traumatic births the pelvic bones and muscles may not return to their normal state or position. This can lead to lower back or hip pain, sciatica, painful intercourse, and your body just not feeling like it once did.

Consider the following to help the pelvis to return to its normal state:

Pregnancy causes many physical and hormonal changes in the body. Many of these changes will return to normal after delivery. Some, such as the size of your uterus may change permanently. Periods can be affected by any birth and even more so if there are serious complications. Also, if you are older than 40, you may experience changes due to Perimenopause.

Many in our community report changes in their periods after their AFE experience. Because each case is unique, individual bodily responses will also vary.

AFE survivors who spend a significant time in the ICU may develop post-intensive care syndrome (PICS). PICS can lead to problems that can involve your body, thoughts, feelings, or mind and may affect the family. To learn more about PICS see the website below:

AFE survivors who received Extracorporeal membrane oxygenation (ECMO) support may face additional complications, both physically and emotionally, after discharge. Since ECMO is a relatively new technology, research on its long-term impacts and outcomes is still emerging. While the articles listed below discuss ECMO outcomes, please note that they are not specific to AFE and may not fully apply to our unique medical circumstances. If you have any questions or concerns about complications related to ECMO, please reach out to your cardiologist.

Helpful Resources

Incision scars may cause physical and emotional discomfort. Remember, your body has been through a lot. It may take a little longer to heal. Often, wound care management isn’t prioritized, with everything else requiring your attention. Here are some recommendations to help your scars heal. 

  • Massage – using lotion or oils, massage the area twice a day for 10 minutes (as tolerated) to lessen the formation of scar tissue and decrease sensitivity.
  • Protect from the sun – this skin is very sensitive and sun damage may result in permanent discoloration.
  • Avoid strenuous activity- activity can bring blood flow to the area causing swelling and more 
  • Silicone sheets (Maderma (™)-  can help reduce appearance over time
  • Compression (consult with your medical provider) can help break down scar tissue, and reduce swelling and discomfort.
  • Laser therapy – can aid in reducing healing time.

Inside the Guide

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