(go back to neonatal death/fatal fetal diagnosis)
This is an informational article on what to possibly expect to have occur from the time you discover a difficult and possibly fatal diagnosis, through the birth, to the farewell celebration that you choose to honor your baby. If you have been given information on the possibility of a difficult diagnosis, you can scan this article for the information relevant to your actual circumstances, and you might read a little more about prenatal testing.
1. The very first consideration to make is in working through your feelings. You may experience any of these feelings, either immediately, or through the duration of your pregnancy, and these are not in any order. You need to know that other parents have come before you on this overwhelming journey, and they have felt these very same feelings:
- sadness
- anger
- disbelief
- disappointment/resentment
- jealousy of others
- shame
- shock
- acceptance/peace/even joy over your own pregnancy and child
- studies show that this “pre-grief”, or “anticipatory grief”, grief experienced prior to the actual death of your child, does not substitute the grief that will occur after your child dies. You will likely experience all of these feelings, and more powerfully, in the days, weeks and even years after the birth and death of your baby.
- more information regarding grief and emotions can be found at our emotional/spiritual link.
2. You need to get support around you. Decide on who will walk this journey with you, and know that in most cases, your loved ones truly want to be a support to you, although they will likely feel ill equiped. They need their own resources and support, too, and it may take you to let them know that, if their questions become overwhelming and take away from the time you need to sort through your own feelings and experiences. Consider including any of the following people, or others:
- your parents and/or in-laws (Nothing Without You was started by a stillbirthday mother, who has resources for parents and for grandparents)
- closest friend(s) and family (guide them to the family/friends link)
- Prenatal Testing support
- perinatal hospice support in your local area
- Alexandra’s House or other prenatal and/or postnatal housing assistance and support
- professionals experienced with your baby’s diagnosis in your area (including transferring prenatal care to a different doctor or hospital)
- other supportive professionals and volunteers in your area, like doulas and photographers (pregnancy/birth/farewell – listed at stillbirthday by state)
- bereavement support in your local area (visit the long term support services link)
- pastor
- professional counselor
- specific support groups or resources if this diagnosis indicates likelihood of future infertility, such as Hunter’s Syndrome, Mitochondrial Disease, or Spinal Muscular Atrophy
- additional support services such as the cost of ultrasound provided by Sustaining Grace
- other moms who’ve come before you. You can read stories by clicking on “All Newborns/Diagnosis” in the right sidebar of this site.
- you can decide how you want to tell your loved ones. Starting a blog for your baby is a great way to work through your feelings, have a special online place that honors your baby, as well as allows others to see what’s happening without seeming intrusive.
3. You are still pregnant, with your child inside you. Your baby’s experience in-utero is not totally conditioned on your perceptions or feelings toward your experience and this journey. However, it is important to come to find ways of celebrating this pregnancy and bonding with your baby now, while you can. Consider any of these things:
- Spiritual connection, including prayer. It releases oxytocin, sending this oxygen-rich love hormone through your bloodstream to be received by your baby.
- connection with your husband, including sexual and non-sexual intimacy and togetherness. Getting a couples massage or retreating to a bed & breakfast weekend getaway in the country is a great idea.
- have a pregnancy belly casting done.
- have a Celebrating Pregnancy blessingway (Sacred Circle) with your closest friends.
- sing and talk to your baby, and touch your belly.
- journal, or write letters to your baby.
Heartbeat Ideas:
- purchase a Build-A-Bear with personalized audio recording, to bring to an OB appointment with you. Record your baby’s heartbeat, to be put in the bear.
- using a device that has the audio recording of your baby’s heartbeat, such as a cell phone, you can follow the steps at waveform to turn the visual pattern of the soundwave into a beaded necklace.
4. Prepare for the birth while you are pregnant:
- view our birth planning information that includes information on lactation, NICU, and more.
- consult with your OB over your hospital policies regarding infant death. Ask about:
- homebirth or other options
- all options of fetal heartrate monitoring during labor if baby may be born alive.
- delayed cord clamping in all situations, especially when Cesarean birth is discussed, as clarification between hysterotomy elective abortion (premature cord cutting).
- the care that will be given to your baby. Are you planning on offering comfort care, or palliative, medical care? If your baby will receive intense medical support, investigate the possibility of delivering at your local intensive care children’s hospital, to prevent a transfer of care after delivery.
- time you can have with your baby after delivery (any concerns or possible situations that would limit this)
- what to expect your baby to possibly look like (we accept donations from mothers of photos of their babies, so that mothers coming after you can help get an idea of what to possibly expect. Please submit photos to Heidi.Faith@stillbirthday.com and they will be added to the “Gestational Age of Your Baby” tab, after all of the weeks of pregnancy photos.
- visit or call the maternity floor, and ask if there are nurses there with experience with babies with your baby’s diagnosis
- rooming-in with your baby, kangaroo care/skin-to-skin bonding, breastfeeding
- ask if shots, ointments, and screening can be delayed or just not performed
- if your baby lives longer than expected and is able to leave the hospital with you, ask ahead of time what to expect in caring for your baby
- if your baby is not expected to live longer than your hospital stay after delivery, ask about making special arrangements to take your baby to the funeral home (if you can do it, or not)
Considerations regarding acknowledging the life and personhood of your baby.
- You may decide to prepare a baby nursery for your baby, even while knowing baby may not survive or ever be present in it outside of your womb. The process may be cathartic to you. Or you may decide not to, but it can very much be an active not building a nursery. Meaning, you should have support around you. It is highly recommended to have a Celebrating Pregnancy Blessingway.
- Breastmilk Donation and other breastmilk decisions.
Considerations regarding acknowledging your faith.
- If you have faith traditions or cultural beliefs that have specific conditions surrounding them, speak clearly to your support team to find a way to make your important traditions or beliefs exhibited however possible. You matter. Your spouse matters. Your baby matters.
5. Preparing for your baby’s death now, while you are still pregnant, is very emotionally difficult, but it may allow you to create specialized plans for your situation.
- consult with different funeral homes, asking them what their experience is in infant death, and what special arrangements they might be able to offer in your specific situation.
- ask if they can arrange for you to bring your baby from the hospital to them.
- if they cannot do this, ask if, when they arrive to the hospital for your baby, if their representative can carry your baby out of the hospital in their arms, just like a live baby.
- Purposeful Gift (organ donation)
- see our Farewell Celebrations for additional suggestions.
Additional Support:
Books
Websites
Diagnosis & Surviving:
Fatal Diagnosis:
- Cherishing the Journey
- String of Pearls
- Birth Plan (from String of Pearls website)
- Growing through Affliction (a letter from one mother to you)
- Special Needs Adoption
- Madison’s Foundation
- Congenital Heart Support
- Congenital Diaphragmatic Hernia Support
- Congenital Diaphragmatic Hernia Support
- Congenital Diaphragmatic Hernia Support
- Trisomy Support (13 or 18 or related)
- Trisomy Support (13 or 18)
- Trisomy 18 support
- Trisomy 13 support
- Anencephaly support
- Prader-Willi Syndrome Support
- Spina Bifida Support
- Cleft Lip/Palate Support (and related)
- Prenatal Partners for Life
- Be Not Afraid
- Sufficient Grace
- Waiting with Love
- Beads of Courage
- Project Sunshine
- Purposeful Gift
- Noah’s Dad – raising a Down’s Syndrome child from the dad’s perspective
- NICU support/micropreemie/preemie (scroll to bottom)
- In addition, put these terms in your search engine to get even more support from your location.
