AFE Families Still Hospitalized
First, if you have found yourself on this page we understand what you must be feeling and are here to help. Our goal is to help you better understand AFE and its physical and emotional impacts before returning home.
Experiencing an amniotic fluid embolism is an unexpected and exceptionally traumatic event for everyone involved. Although each case of AFE and the recovery are unique, there are some helpful things you can do while a loved one is still hospitalized. Below are resources and recommendations to assist you while your loved one remains hospitalized. For more information about AFE, be sure to check out our Frequently Asked Questions.
Helpful Steps and Information for the Hours and Days Following an AFE
Asking For and Receiving Help
Allow people to help. One of the most common responses we hear is that sometimes you don’t know what help you actually need or anticipate needing. Many of the items on this list can be done or started by someone else. Ask a close family member or friend to help manage the tasks below or identify someone that may be best suited for each item. You will find many people will want to help, even strangers. Be sure to keep contact information of those offering to help; you may not have an immediate need but may discover one at a later time.
Communicate Your Loved One’s Condition Efficiently
Spouses and family members can spend precious hours providing updates to other family, friends, neighbors and coworkers. Instead, designate one person to be the director of all communications and determine the most effective and efficient way to communicate with others.
We recommend using website to communicate your loved one’s condition and highlighting the family’s needs. There are specific companies that have designed FREE and EASY to use website templates specifically for those facing a medical crisis.
Helpful items to include on a website are daily updates, photos, as well as listing specific ways people can help such as prayer requests or spiritual assistance, meals, flowers, monetary donations, etc. Be sure to also include whether you would like visitors and list those times. Priority should be rest for patient as well as family. Consider having a guestbook for well-wishers to leave messages of hope and comfort rather than visiting. The guestbook has proven to be exceptionally helpful during the recovery process.
Listed below are organizations that offer websites and personal blogs:
Caring Bridge (http://www.caringbridge.org/about)
Care Pages (http://www.carepages.com)
Lotsa Helping Hands (http://www.lotsahelpinghands.com)
Caring for a Newborn While Mom is Hospitalized
It can be extremely challenging to manage the care of your loved one in addition to caring for a newborn child. If the baby condition is stable they will most likely remain in the NICU or nursery for 1-2 days for observation. If this has not yet been addressed you may want to speak with the case manager at the hospital or the physician on duty to have the baby admitted into the NICU or newborn nursery for observation while your loved one remains in critical condition.
Due to COVID, the NICU will very likely adhere to a strict visitor policy and only allow the dad and possibly the grandparents in to see the baby. Consider the option to have one person in charge of the baby’s care and one person in charge of the mother’s care. It will be important to have that person attend all physicians’ consults. This can be logistically impossible for one person to manage both. This will be especially important if the baby suffered complications during delivery and will require numerous medical decisions.
While many people will want to see and visit the baby once they are discharges, please consider the mother’s feelings and be mindful of passing potentially harmful germs or illness to the baby or other children. Respiratory Syncytial Virus or RSV can cause serious illness in infants under 12 months. It is important to balance being helpful with childcare and keeping children healthy.
Discuss feeding options with the NICU and postpartum staff. Depending on the baby’s condition, they typically begin with IV fluids and then transition to formula. If mama had planned on breastfeeding, she still may be able to once she becomes stable. Even if the baby is given formula the mother may still be able to successfully breastfeed. Once she is able, she may begin to pump her breast milk and eventually breastfeed once medications have cleared her system. This is a very delicate decision and should be made with consideration for the mother’s previous intentions and what is in the best interest for her health. It is okay to encourage the mother to breastfeed if she is able. It is equally important to assure and comfort her if she is not able or desires not to breastfeed. The most important priority should be on the mother and baby’s health and their ability to bond.
If both the baby’s and the mother’s conditions allow, learn what the hospital’s guidelines are for having the baby spend time with the mother in ICU. If this is not possible be sure to take pictures and video of the baby and place them in the hospital room for the mother to see. It can be a very sad experience for the mother not to have seen or spent time with her newborn. Photos and videos will help bridge this gap and provide a small connection for the mother to have until she can be with the baby in person. It is also recommended to have photos of older children, pets or other memorable photos in her room.
If the baby is released before the mother, try to identify one or two people who will help the father manage the baby’s schedule. Again, keep in mind that it will be extremely sad and disappointing for the mother to not be the primary caregiver. Choosing someone who is respectful of these feelings and with whom the mother would be comfortable with taking care of her baby is essential. Have those caring for your infant and/or other children maintain a daily log of their activities and milestones and take a lot of photos and videos. These will prove very helpful during the mother’s recovery.
Contact the employer who provides the health benefits and be sure to add the baby to the health insurance policy. This is very important to do as soon as possible to avoid any medical billing issues. Be sure to provide the hospital with the updated information.
Caring for Older Children While Mom is Hospitalized
The emotions and needs of older children will vary depending on the children’s age. Confusion and fear are the most common emotions older children will experience while the mother is in the hospital and during the recovery process. Older children can feel sad, isolated, angry and alone. It is important to keep their routine as normal as possible. You may wish to have them stay with a close relative or friend in the days immediately following the AFE to limit their exposure to the stress of the situation.
Consider asking friends to give gifts to older siblings instead of for the new baby. New toys, games, books or videos may provide a welcome distraction.
Hospital social workers may be a helpful source of advice and should be able to provide helpful resources to assist with explaining the situation to the child(ren) in an age-appropriate way.
It is also important for others who will be interacting with the child(ren) on a regular basis (daycare providers, teachers, etc) to be aware of the family’s situation. Children may manifest their stress in unexpected ways and depending on the age, this could include regression in potty training, unusual tantrums, anger, withdrawal, difficulty napping, etc. It is important that those interacting with your child fully understand the situation and are able to respond empathetically to unexpected behavior.
Preserving Memories For Mom and Baby
Photos and Videos
Delegate someone to be in charge of taking photographs and videos of the baby and those coming to visit mom. Many of the women who survive AFE will suffer from short-term and/or long-term memory loss and will be very curious about what happened while they were hospitalized. They may appear to understand what is happening initially but will likely forget much of what transpires due to the trauma and heavy medications. While many may not be joyful photo opportunities, several women who have recovered have expressed that they wish they could see evidence of what they experienced. Consider taking the photos and holding them until your loved one is ready to see them.
Taking Notes / Journaling
Write things down so there will be a record of what happened while the mother was in the hospital. Keep a detailed journal of your loved ones daily activities and thoughts. Write about the days or hours before the delivery as most survivors who suffer a coma or heavily sedating drugs will not be able to recall those memories. Include the names of physicians nurses, respiratory techs, physical and occupations therapists and any other service provider you encounter. These will be important for future reference to address concerns or offer notes of appreciation. Keep the journal by the bed so it can easily be accessed. Electronic tablets or iPads are great tools to help document the event.
Even as a spouse, family member or caregiver, your memory will likely be unreliable for some time.
AFE Clinical Summary Form
Have the important clinical details of your care all in one place!
Our AFE Survivor Clinical Summary is a two-page editable PDF document designed to summarize the most significant aspects of your clinical care to better assist you in understanding what happened to your body.
You can ask your OBGYN, Midwife, or another primary healthcare provider to help you complete it. While they may not have some of the details in their charts, most can access your medical records and complete a good portion of the form. If they are unable to assist with that request, you may also use this as a guide when reviewing your medical records.
The summary form also serves as a great way to inform other healthcare providers in the continuity of your care such as follow-up visits with specialists or mental health providers. It aims to minimize the triggers associated with retelling the event and gives healthcare providers a quick and simple format to get up to speed on what you experienced. Simply provide it to them at your follow-up appointment or email/fax/mail to them prior to your appointment.
Receiving and Managing Help
When your loved one has been released from the hospital many people will often volunteer to deliver a meal as a way to offer assistance. Ask a family member or friend to coordinate the process and spread the word to others who may want to participate. Include friends, co-workers, neighbors and church members.
Set a specific time for meals to be delivered. If it is too difficult for the family to speak with each person delivering meals, try to arrange to have someone at your home to accept each meal. You may also consider requesting meals be left in a cooler placed by the front door.
Determine the portions needed or have the meals planned to come every other day. Otherwise, your fridge could fill up very quickly and become hard to manage. Have the coordinator be in charge of making sure the fridge is cleaned out once a week.
Be sure to make note of any food allergies, preferences or limitations. Have the coordinator keep a log of people who provide meals and their contact information so you can offer words of appreciation at a later time.
Gift cards for Door Dash, Uber Eats, Grub Hub and Postmates are also great options.
Below are a few websites that help coordinate meal deliveries with ease.
Simple tasks like running to the grocery store or general errands will be a task that can be given to others in the days and weeks after your loved one is hospitalized. Have someone itemize what the family’s preferred brands/sizes are and make a list of essentials such as milk, bread, eggs, fruits, toilet paper and paper towels. Most of the daily meals will likely be provided but having the basics and snack items handy will be especially helpful if you have older children.
AFE Research Opportunity!
You are likely shocked and being forced to make very difficult decisions right away. While we never want to add to your already full plate, we do want to let you now there is an important and time-sensitive opportunity to have your loved ones participate in an important research study.
If your loved one was hospitalized for her birth and her AFE occurred within the last 3 days, there are critical blood specimens that will be otherwise discarded that could instead be sent to us for our study. We would not ask for any additional specimens to be taken from your loved one.
We believe blood and tissue specimens from women who suffer an AFE hold critical clues that can help researchers advance their knowledge of the condition and develop a means for prevention and treatment so that no future mothers and babies will die. To learn more or to begin the process of enrolling your loved one contact us at 1-619-820-3383.