Hospice for the unborn child
Birth planning and medical decision making before birth
as well as more traditional hospice and palliative care after birth.
Perinatal Nursing support –
is a RN with experience in L&D, NICU, and is a certified grief counselor. She is
available to provide pre and postnatal nursing support, birth planning, or help
with understanding your baby’s diagnosis.
is often misunderstood by families...Many feel that choosing hospice care means
giving up on their child. The Perinatal hospice approach is to walk with the
parents through their journey after receiving a difficult diagnosis during their
pregnancy, and to help the parents to deal with that diagnosis in the way they
feel is best...This can mean anything from choosing to withhold any life saving
measures to developing a palliative care plan with the
The Perinatal hospice approach extends to the whole family in every aspect;
physical, emotional and spiritual. It follows the family through their journey
as long as needed, from beginning, through follow up grief counseling...
This plan of care is completely flexible and the family can choose at any time
to be more or less aggressive. The plan can also extend into pediatric hospice -
helping with palliative care for the growing child.
are many programs around the country and many people who work in support by
phone and online...I work with families - both through the
and sometimes through this site...I also work
with other Perinatal hospice workers to help coordinate resources for families
around the country...If you need it, I can often help you find it...
If any of the prenatal families would like more information, please feel free to
contact me directly...You can also go to the
and register for more support if you ever feel you need it...I can help answer
any medical concerns you might have, and if available, help you to connect with
local resources, or at the very least, offer my support...
~contributed by Laurie-Beth
Another wonderful Contact is:
Mary Gravina, LCSW
Director, Perinatal Hospice Program
631-666-6873 ext. 203
Mary is an expert on perinatal hospice. She was the
one who supported me during my pregnancy.
Perinatal Hospice Care - A
“must see” for Prenatal Families with a Poor Prenatal Diagnosis After
learning that their unborn babies carried fatal genetic flaws, two
families turned to specialized hospice programs for support.
WATCH BE A VOICE FOR LIFE
- An outreach of Focus on the Family
This beautiful short slideshow created in honor of Audrey Caroline's
Perinatal Hospice is the tool families need to carry to term. When I carried my
daughter to term with trisomy 18--there was no "perinatal hospice" in my area. I
was on my own. Due to a "coincidence" I found a hospice social worker who
specialized in children's bereavement at my local hospice and explained my
situation and asked if she could help prepare my older girls for the uncertain
arrival of their sister. She had never had a case like this but offered me
support anyway. Supporting our family and making the most of a most likely short
life is what hospice does so well. She walked with my family throughout the
pregnancy and beyond. She was my advocate as we met with hospital staff to plan
out the birth months in advance. She was in the hospital on the day of delivery
to support my extended family who had gathered that day to welcome Grace. She
continued to support me and advocate for us while my daughter remained in the
hospital for one month and then continued as we moved her home. A Hospice team
was assigned to us --met us in the hospital--and came each day to check on us. I
never felt alone. From this experience emerged the beginning of a perinatal
hospice program in my local area which has now become a model program. We are
limited to helping moms in the suburban Long Island, NY area (Suffolk, Nassau,
Queens--NY). One case eventually led to the program that exists today. There are
about 40 "perinatal hospice" programs in the US --the need is great and
unfortunately there are not established programs everywhere.
My advice to any mom carrying a baby with a fatal diagnosis to term is to get
Hospice support as soon as you are diagnosed. If your community does not have a
perinatal hospice--then contact the Palliative Care Department in your hospital
or contact your local hospice anyway. Perinatal hospice support should be
offered at diagnosis for families to make an informed decision. Often there is a
huge gap in time between diagnosis and hospice contact---Hospice has a stigma to
it--but in our case, it truly was the support that I needed. A baby can always
"graduate" off of hospice--
It doesn't mean you are going to "let your baby die"--in fact it is just the
opposite --you are going to maximize the chance of your baby living in the most
loving and supportive way.
A mother has to be able to accept the diagnosis first--in order to make the next
step to hospice--sometimes that is very difficult. I never doubted that my
daughter's condition was fatal--I knew I couldn't fix it, but I could have some
control on the decisions that were ahead and of how she was going to live this
short life of hers in comfort and in love. Feel free to contact me at
firstname.lastname@example.org if you would like
more information about our perinatal hospice program. It just started with one
mom and one very special little baby. Maybe one can start with you too!
Mom to grace 7-26-02 to 9-26-02 Full trisomy 18
Bringing a “not viable,” “incompatible with life” diagnosis
to Term – Prenatal Hospice - Perinatal Hospice - Palliative
Care - Comfort Care
-Interruption (women choosing to interrupt their
Helping families with infants who have fatal or serious
birth defects for which selective termination and late term
abortion is sometimes recommended.
Perinatal hospice/palliative care programs and services
A perinatal hospice approach walks with these families
on their journey through pregnancy, birth and death,
honoring the baby as well as the baby's family. Even in
areas without a formal program, health professionals and
family and friends can offer support in the spirit of
A gift of time.
following a terminal prenatal diagnosis.
is a charitable perinatal-infant hospice house and refuge
for abandoned or neglected babies. Our first focus is to
provide spiritual, grief and practical support to families
pregnant with terminally ill babies and for families whose
babies are diagnosed later with a terminal illness. We
attend medical visits, develop compassionate and
comprehensive birth plans, go to labor and delivery,
maintain vigils through the babies' death, bathe and dress
the babies, and participate in funerals and in long-term
Enabling women to avoid abortion by providing for their
medical social spiritual and practical needs. This program
is Life Affirming, Positive and God-honoring way to car for
a baby that will die during birth or shortly thereafter.
Perinatal hospice/palliative care programs and services
As prenatal testing becomes increasingly routine, more
parents are learning devastating news before their babies
are born. In too many places, the ability to diagnose has
raced ahead of the ability to care for these families and
their babies. But in a beautiful and practical response,
some pioneering hospitals and hospices around the country
are starting perinatal hospice or perinatal palliative care
programs for families who wish to continue their pregnancies
with babies who likely will die before, during, or after
- Resources for parents who carry their baby to term despite
a poor prenatal diagnosis-Stories, Film and Slideshows,
Tips for Carrying to term Resources