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If you are reading this section because your doctor has told you that there
is no way your pregnancy can continue and your baby will not survive long after
birth, please know how sorry we are. Many of the members of the PROM list have
also experienced a perinatal loss and our hearts go out to you and your family.
This is the hardest thing you will ever have to go through.
Note to the reader
If you are reading this page because your health care practitioner told you
that you "should" terminate your pregnancy, but
- you have not inquired about whether any other alternative treatments
are available to you (such as amnioinfusion or amniopatch); or
- you have not asked if continuing the pregnancy would endanger your health;
or
- you have a gut feeling that this is not the right decision for you,
stop now, and go back to your practitioner to get the information you
need before you agree to proceed. You will find suggestions for questions to
ask and things to discuss with your practitioner here.
Don't be shy about talking to your practitioner a second, third, or even fourth
time if you feel uncertain for any reason about the decision to end your pregnancy.
Many PROM list members were initially told that they "should" terminate their
pregnancies simply because their health care practitioners believed that their
babies' chances of survival were low, and not because the women themselves were
showing signs of infection or were in active labor. After examining their options,
many of these women ultimately rejected the suggestion that they terminate,
and some went on to have healthy babies.
Because we do not know anything about your situation, there is no way we
can determine whether it is safe for you to wait to deliver your baby or guarantee
that you will also have a healthy baby if you do not terminate your pregnancy.
That is why you MUST talk with your health care practitioner if you are at all
uncertain what is right for you and your family. If you have any concerns
that your practitioner is not advising you adequately, make sure to get a second
opinion from another practitioner, if possible one that specializes in dealing
with high risk pregnancies.
Being certain that termination is the right choice for you is important since,
in most cases, once you begin the procedure, you cannot change your mind. Speak
to your practitioner again if you have any doubts or are unwilling to give up
hope just yet.
For those of you who have explored your options and will be going through the
process of delivering your baby, we would like to share some information that
helped those of us who have experienced losses or that we wish we knew ahead
of time.
The pregnancy and infant loss support organization SHARE publishes a list of
the rights of parents and babies who are experiencing a perinatal loss. These
"Rights of Parents" and "Rights of Baby" statements give guidelines for the
hospital and parents to make the birth experience as meaningful as possible.
Another resource is the UK-based Stillbirth and Neonatal Death Society's "Principles
of Good Practice" for care when a baby dies. You can print both of these resources
out for your reference, or to give to your health care team at the hospital.
SHARE's Rights of Parents and Baby
http://www.nationalshareoffice.com/rights.asp#Baby
SANDS Principles of Good Practice
http://www.uk-sands.org
Once you know that you will be delivering your baby and that he or she will
not survive, take a few moments to decide how much time you need to prepare
for delivery. The amount of time you need to prepare to deliver your baby
is very personal and there is no right answer.
Even if you have been given the option to delay delivery, you may feel that
you would like to deliver as soon as possible, particularly if you have small
children at home.
Or, you may feel that you and your family would benefit from taking some time
to adjust to the idea of a perinatal loss. You may also feel that there are
some preparations and arrangements you would like to make to help say good-bye
to your baby.
Discuss with your health care practitioner how much time is available
for you to make decisions about your baby's delivery. Your practitioner may
not have given you the option to delay delivery, or may have presented immediate
delivery as their preferred choice by saying something like "You might as well
get this over with as soon as possible." However, your doctor should be willing
to accommodate you if you wish to delay delivery, as long as the amount of time
you request does not create any danger to your health or safety.
Here are some considerations as you decide how much time you need to prepare
to deliver your baby:
There will be both practical and emotional preparations that you will need
to make before you deliver your baby. From our experience, it is helpful
to take as much time as you need to make decisions about delivery and other
procedures, assemble people to support you, and gather the supplies you need
to create lasting memories of your baby. Taking this time now will minimize
any regrets you may have about acting hastily or missing out on important moments
or mementos.
- Review the information on this page to get an idea of the decisions you
would like to make and things you would like to consider. For example,
whether to make a birth or delivery plan, take photographs, and have a baptism
or blessing.
- Determine whether you need a few minutes, a few hours, a day, or longer
to prepare yourself and your family for your baby's delivery. If there are
family members who will be coming from out of town for the delivery, factor
in their travel time.
- If there is a religious ceremony that you would like to have performed
before or after your child is born, decide on this as early as possible so
you can arrange for someone from your house of worship or someone from your
faith to perform the ceremony. You should also find out who is "qualified"
to perform the ceremony if someone from your faith is not available.
Talk with your doctor about the amount of time you need to prepare, and whether
there are any health or safety reasons that would make it advisable to deliver
sooner. Don't be afraid to voice your preferences about how long you would
like to wait.
- Ask whether you are showing immediate signs of infection or active labor,
or are at risk for other pregnancy complications such as placental abruption.
- Even if your doctor initially recommended that you deliver right away, if
it is important to you to take more time, ask again if it is possible to take
more time and how long you will have.
- If you would like to leave the hospital and go home for a day or
more before delivering to prepare, ask whether there are certain signs or
symptoms to look for that would require you to return to the hospital to deliver
sooner.
- If you would like to go into labor naturally, ask whether you should
remain in the hospital until labor begins, or whether you will be sent home
to wait. If you will be going home to await the natural onset of labor, ask
when you should return.
Depending on how many weeks you are into your pregnancy, your health care
practitioner's expertise and/or philosophy, and whether you are experiencing
any complications, you may be offered the choice to deliver your baby
- vaginally, with labor natural or induced by medication,
- by Caesarean section (C-section), or
- by dilation and evacuation (D&E).
Ask your health care practitioner to explain each procedure to you in detail.
Here are some questions and considerations that will help you decide which option
is right for you.
- Ask your practitioner about the risks and implications for each delivery
method, both for this delivery and subsequent pregnancies.
- If it is important to you for your baby to be born alive (and/or intact)
-- even if he or she will only live for a short time -- find out which delivery
method will give your baby the best chance of being born alive.
- If it is important to you to remember the details of your baby's
delivery and the hours afterwards clearly, find out which delivery method
will allow you to be mentally alert during the procedure and afterwards.
- Ask your practitioner if any preexisting medical conditions you have
will rule out certain delivery methods.
- Ask your practitioner which delivery method(s) he or she would be able to
perform, and which delivery method(s) would need to be performed by a different
doctor or at a different facility.
- If you will be delivering vaginally, find out whether you are required
to take medications to induce or whether it is safe to wait and go into labor
naturally, if you prefer.
- Find out which delivery method will allow you to have your partner, family
member, midwife, doula, and/or birth assistant with you, if you prefer.
During your baby's delivery, you might receive one or more of the following:
medications to induce labor, painkillers, antibiotics, and antidiarrheals. You
might also be given other medications, depending on your health and circumstances.
Find out all the medications that will be administered and write them down,
if possible.
- Alert your health care team if you have any drug allergies or negative
reactions.
- Find out whether any of the medications have any side effects or drug
interactions with medications you may already be taking.
- Find out whether there are any risks (including long-term risks)
of taking any of the medications to be administered.
- Find out which meds (if any) are "required".
Many medications (particularly pain medications) affect your ability to be
alert, awake, and/or appreciate what is happening around you. Ask how alert
or lucid you will be during the time you are with your baby if you do take the
medication recommended.
- If you would prefer to be alert during your baby's delivery and immediately
afterwards, ask your practitioner what your options are for managing your
pain.
- Find out whether alternative medication is available that would allow
you to be awake and remember the time with your baby, if that is what you
want.
Even if your baby will not survive the birth or will only survive a short time
after birth, his or her delivery experience can still be meaningful to you and
your family. If you have not already created a plan, consider putting something
together that tells your health care team how you would prefer your baby's delivery
to be handled. It doesn't have to be formal or even written, although jotting
something down on paper may help you organize your thoughts. Here are some considerations
to include in your delivery plan.
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Whether you prefer vaginal birth, c-section, or D&E. |
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The type of pain relief you would like. For example, whether you
prefer sedatives, epidural, local anesthetic, no pain medication, or some
other option. If it is important to you to be awake and remember the
time you spend with your baby, request painkillers that will allow you
to be alert and awake during the birth. (See section on Medications) |
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Whether you want monitoring of mother, baby, both, or neither during
labor and delivery. |
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If you are having a c-section, when you would like the drape lowered
(before, during, or after delivery). |
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Whether there are certain doctors or other staff that you do or do
not want attending you. Also, whether you would prefer not to be seen
by residents or students. |
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Whether you want specific music or lighting. |
- Family, friends and birth attendants
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Who should be allowed in the room with you, and when. |
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If you have other children, whether or at what point you would
like them in the room with you, and/or what you would like their role to
be. |
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How you would like information conveyed to visitors who are not
being allowed into the room. |
- Caring for your baby during delivery
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Whether to address your baby by name during and after delivery,
if you have already named your baby. (See the "Naming your baby" section) |
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Who should catch your baby and/or cut the umbilical cord. |
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Whether you want your baby's gender announced, if you do not already
know. |
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Where you would like your baby placed after delivery. For example,
if you would like your baby placed on your chest, wrapped and held by a
family member, or in a bassinet. |
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How you would like your baby transported, if you need to be moved
from one room to another. For example, if you would like your baby to remain
on your chest, or carried by a family member. |
- Caring for your baby after delivery
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What measures should be taken to keep your baby alive after he
or she is born. |
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Whether you would like to see and hold your baby. (See "Seeing
and holding your baby" section) |
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Whether you would like to bathe and dress your baby. |
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Whether there are any religious services you would like to have performed,
when you would like them performed (before or after your baby is bathed),
who should be present, and what mementos you would like to
have from the service (photos, video, etc). |
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What mementos you would like to have of your baby, including
photographs. (See "Mementos" and "Photographs" section) |
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Whether you would like the hospital to delay routine procedures until
you've had a chance to hold your baby for a little while. |
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How much time you would like alone with your baby. The hospital
should not give you any time limits. You should be able to take as much
time as you need to say goodbye to your baby without feeling rushed. |
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If you want your baby to remain with you in the room, and for how
long. |
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How often you want the nurses to come into your room. |
- After you say good-bye to your baby
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Whether you would like an autopsy performed. (See "Autopsy" section) |
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Where you would like to spend your post-partum time (some hospitals
have a floor for GYN patients away from the sound of babies, if you prefer). |
It is easy to get caught up in the preparations and decisions for your baby's
delivery and miss out on the last moments you will spend with your baby. Here
are some suggestions from the members of the PROM list for making your remaining
hours together as a family meaningful.
- Set aside time every hour to bond with your baby before and during delivery.
Massage your belly, and talk or sing to your baby. Savor these moments that
you will have this baby inside you, especially if your medication will make
you groggy later.
- Before you begin the delivery procedure (i.e. before you begin medication
to induce labor, or leave your room for the c-section or D&E), ask your health
care team to leave you alone for a moment. Your life is about to change dramatically,
and it may be helpful to take a moment to say a prayer, cry with your partner
or family, or talk to your baby one last time while he or she is still inside
you.
Some other suggestions to help make saying good-bye meaningful.
- Work on your birth or delivery plan. (See "Create a birth or delivery
plan" section)
- Ask to talk with the hospital's social worker for counseling on what
services are available, what arrangements the hospital can take care of for
you, and how to implement your requests for how your baby's delivery will
be handled.
- If you are delivering vaginally, it might take hours before the medications
take effect and your baby is delivered. Find out whether there will be
a shift change for your nursing team, and make sure that the next shift
is familiar with how you would like your baby's delivery to be handled.
You are not required to see or hold your baby after he or she is born. However,
your health care team will probably tell you very few people regret seeing
or holding their baby, and most of us on the PROM list who have experienced
a loss would agree. Seeing your baby plays an important role in saying good-bye
and coming to terms with his or her loss. Whether or not you choose to see your
baby immediately after delivery, most hospitals will allow you to see your baby
at a later time. Ask your health care team how many days after your baby's delivery
you will be able to see him or her again.
If you decide to see and hold your baby, spend some time getting to
know your child. Don't feel rushed. You are entitled to take as much
time as you need to say good-bye to your baby. Remember, this will be the only
time that you will be together with your baby as a family.
- Spend time looking at him or her. Look for family resemblances or
unique characteristics.
- Talk, sing to, and touch him or her.
- If you have other children, talk with the nurses about the best way
to introduce them to their sibling. It is reasonable for them to want to touch
and hold the baby, and doing so will assist them in the grieving process.
- Bathe and dress your baby, if appropriate.
- If you would prefer to be left alone with your baby, ask the hospital staff
to give you some privacy.
- When you are ready, you can kiss your baby good-bye.
If you are uncertain about seeing your baby because you are worried
or afraid about how your baby will look, ask your nurse to first describe your
baby to you and tell you what to expect before you see him or her.
If you do not feel up to seeing your baby right away or if you know
ahead of time that your medication will make you too groggy to remember, ask
the nurse whether it will be possible to have your baby brought back to you
later that day or before you are discharged from the hospital.
You are not required to take photographs of your baby after he or she is born.
However your hospital staff and books on perinatal loss will tell you that very
few people who have photos taken regret taking the photos, and that it helps
during their grieving process. In addition, photos provide lasting memories
of your baby and the time you spent together.
If you are at all uncertain about whether you want photos, consider
the following:
- This will probably be your only opportunity to take photos of or with your
baby.
- The hospital staff can take the photos and hold them for you in case you
want to see them later.
- Consider using black and white film since it is not as harsh as color film.
Alternatively, color film or digital photos can also be retouched to make
them black and white.
Some special photos you may want to take include:
- Your baby with and/or without clothing.
- You and/or other family members holding your baby.
- Photos of the baptism or blessing.
- Your nurses, doctor, or clergy and you with your baby.
- Closeups of your baby's hands and feet.
- A closeup of your baby's hand in your hand.
- A photo of your baby on the scale.
Mementos can be powerful and precious reminders of your baby. Some mementos
you may want to work with your health care team to preserve are:
- Foot and hand prints
- Foot and hand impressions (if you have a plaster kit for this purpose)
- A lock of hair
- Clothing, cap, or blanket used for your baby
- Washcloth used to bathe your baby
- Measuring tape used to measure your baby
- Crib or cot card
- Wrist band
- Card some hospitals place on the door indicating a pregnancy loss
- Ultrasound pictures from the hospital
There is no requirement to name your baby, but it is entirely appropriate if
you wish to do so. If you think you would like to name your baby, consider
naming him or her before you go into labor or begin delivering. Naming your
baby before you deliver is helpful because your caregivers and family can call
your baby by name while you are in labor or during the delivery, as well as
after he or she is born. Naming your baby will also be helpful for filling out
any government or hospital forms after your baby is born.
If you have not selected a name prior to delivery, keep in mind that there
is no time limit for when you must name your baby.
Here are some of the people you might want to call or notify before you deliver:
- Family and friends: to be at the hospital with you and/or see your
baby, and/or for prayer or spiritual support.
- Clergy: To perform baptism or blessing, and/or for prayer or spiritual
support.
- Midwife, doula, birth instructor, or birth assistant: To help with
the birth in person or to give suggestions over the telephone.
Each jurisdiction has different regulations for obtaining a birth certificate
and death certificate for your baby. The type of documentation you can obtain
often is related to how far along in your pregnancy you are.
- If your baby expires soon after birth, your jurisdiction may not automatically
issue a birth certificate. You may need to request a birth certificate if
you would like one. (Keep in mind that you may need a birth certificate and/or
a tax ID number if you want to claim your baby for tax or life insurance purposes).
- If your baby dies before he or she is born, your jurisdiction may allow
you to request a certificate of stillbirth.
- If your hospital does not have the paperwork to obtain the birth and/or
death certificates for your baby, ask them to provide a "birth verification
letter" stating all of your baby's information (weight, measurements, date
of birth, etc.) so you can apply for the certificates yourself.
- You may also be able to obtain a death certificate through a funeral home
or mortuary, if you use one.
- Your hospital may provide a "certificate of life" for you to take home.
The hospital will probably ask you to decide whether you want an autopsy conducted
on your baby and what you would like to do with your baby's body, before you
deliver. If you would prefer to focus on the task of delivery and saying good-bye
to your baby and you do not know for sure what you would like to do in either
case, ask the hospital whether you can take some time to decide. Find out
how long you can wait before you make the decision and have them write down
the phone number of who to contact after you go home.
- Autopsy and pathology analysis. An autopsy may provide additional
information, such as insight into why your PROM occurred, and the gender of
your baby if it is otherwise too early to know for certain. In general, an
autopsy will not delay funeral or burial/cremation arrangements. Keep in mind
that members of the PROM list report that autopsies do not always reveal the
cause of PROM.
- If you are unsure about what an autopsy entails or how invasive
it will be, ask someone from your health care team to give you a detailed
description.
- If you decide to have an autopsy performed, find out the level
of analysis that will be performed on the placenta (microscopic or gross).
If you are unsatisfied with the level of analysis, discuss this with your
health care practitioner. Also, find out how long tissue samples or slides
will be kept, in case you want to have an outside lab review the slides
at a later date.
- If you decide not to have an autopsy performed, ask whether your
health care team will still be able to get useful information from the placenta
or other samples.
- Deciding what you would like to do with your baby's body. Ask your
hospital what the legal requirements are for disposition of your baby's body.
Some jurisdictions require burial or cremation after a baby is past a certain
gestational age. If your baby was under the age limit where burial or
cremation is required, most jurisdictions will still allow you to arrange
a funeral, burial, and/or cremation if that is your wish.
- If you would like your baby to be buried or cremated, ask if the
hospital can contact your mortuary or funeral home, or if the hospital has
a mortuary or funeral home to recommend. You may choose to have your baby
buried in your family plot. Many cemeteries will allow your baby to be buried
or interred with a family member for a nominal fee. If you are concerned
about whether you can afford burial or cremation services, ask the hospital
if they know of any funeral homes that will perform perinatal funerals free
or at a reduced charge, or if the hospital performs this service.
- If you do not wish to have your baby buried or cremated, ask whether
the hospital can make arrangements to dispose of your baby's body for you.
You may want to ask specifically what the hospital's arrangements are, and
whether the hospital will keep a record of the arrangements in case you
would like to access that information at a later date.
You can memorialize your baby in any way you choose. You can have a private
memorial service, a public funeral, create a website, dedicate a park bench,
plant a tree, make a donation, sponsor a child in need, or light a candle on
the anniversary of your due date or delivery date. Or you can decide not to
do any of these things, and just simply hold your baby in a special place in
your heart.
What matters is that you do what is appropriate for you as a parent. Your baby
will always be your baby, and the memories of the time you spent together will
always live in your heart and mind.
You may choose to have a very private memorial service or a more public funeral
service. Your baby's memorial service can be religious, but is not required
to be.
Some people prefer to wait until after cremation and then plant a memorial
garden at their home and scatter the ashes. There is no time limit for when
you can hold a memorial service. Do what feels right for you and your family.
- If you choose not to have a viewing of the body, you can display pictures
instead.
- If you have time before the memorial service and you have photos of your
baby, consider having an artist create a drawing from your photos (see "Resources"
section). The drawings are sensitive in that they capture the beauty of your
child without the severe bruising that most premature babies have caused by
the labor process.
- Decide whether you want your child's death announced in the newspaper.
- If you will be dedicating a memorial garden as part of your service, you
can include a stepping stone with quotes or poems. (See "Resources" section)
An internet memorial site can provide a very special place for you to remember
your baby and share him or her with your friends and family. In particular,
an internet memorial is a nice way for family members that live too far away
to attend a memorial service held in honor of your baby, to participate in remembering
your baby. You may make your own site or use an online babies site and
then set it up as a memorial (see “Resources” section for some babies sites).
Many people choose to give their memorial site spiritual or religious themes,
in accordance with their faith.
Internet memorials may be an easier way to share your loss with some people,
since it is sometimes hard to know what to say to a parent who has just lost
a baby. With an internet memorial, family and friends can view the site and
leave a message in the guest book in their own time.
Your internet memorial could consist of:
- Photos or drawings of your baby.
- Your baby's footprints.
- Your thoughts and memories of the baby during pregnancy and delivery, as
well as any music that may have special meaning to you.
- A place for your partner or other family members who were present at your
child's birth, to share their own feelings and memories.
- Guest book for friends and families to share their thoughts and feelings.
Due to the fact that the internet is an open forum, consider making your
memorial site password protected. That way, you can provide the password
to anyone you choose, while preventing any people with ill-intentions from gaining
access.
Some of the members of the PROM list have also chosen to remember or honor
their children though permanent memorials or charitable donations.
- Make a financial or in-kind donation to organizations such as The March
of Dimes (which has an emphasis on prevention of premature birth), a local
children's hospital, or your hospital's NICU.
- Dedicate a tree or bench at a local arboretum or park.
- Donate books on dealing with perinatal loss in your child's name to your
hospital, local support groups, or the library.
- Sponsor a child in need, at home or abroad.
- Name a star after your child.
http://www.geocities.com/tabris02/tips-birth.html
Maine Medical Center sample birthplan (keep in mind this was not written for
parents expecting a loss) http://www.mmc.org/mmc_community/Birthplan.pdf
Perinatal loss recommended reading list
http://www.nationalshareoffice.com/catalog_frame.asp
PROM list members especially recommend:
- For ideas for how to deal with the shock of finding out you will lose your
baby, and planning for his or her birth:
-- Help, Comfort and Hope After Losing Your Baby in Pregnancy or in the First
Year
by Hannah Lothrop
-- A Silent Sorrow: Pregnancy Loss (Chapter 6: Crisis Pregnancies and Loss)
by Ingrid Kohn and Perry-Lynn Moffitt
- For coping after you come home from the hospital:
-- Empty Arms
by Sherokee Ilse http://www.wintergreenpress.com
-- Empty Cradle, Broken Heart
by Deborah L. Davis
-- When a Baby Dies, the Experience of Late Miscarriage, Stillbirth and Neonatal
Death
by Nancy Kohner and Alix Henley
Postpartum depression
http://www.postpartum.net
Perinatal loss resource websites
http://www.babylosskit.com/resources.html
http://www.babyloss.com
Stepping stones, and other memorial gifts
http://www.thecomfortcompany.net
Artists who can make drawings of your baby
Heather Spears (pencil drawings)
http://www.heatherspears.com/drawings/bereavement.htm
Portraits by Dana (pencil portraits)
http://www.portraitsbydana.com/AngelsAbove.html
Sue Fernandes (pastel portraits and pencil sketches)
email: suefernandes@optusnet.com.au
phone (Australia): +61 2 6458 4227
Article by Kay Squires, with special
thanks to Valerie, Holly, and Marion, and the members of the PROM list
January 2005
© 1998-2024 Inkan, The PROM Page
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