Perinatal Hospice

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Living With Trisomy 13

An outreach for trisomy and other rare diagnoses

Perinatal Hospice
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 Hospice 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 family...

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.

There are many programs around the country and many people who work in support by phone and online...I work with families - both through the MISS Foundation 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 MISS Foundation 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
Hospice Care Network
631-666-6873 ext. 203
Mary is an expert on perinatal hospice. She was the
one who supported me during my pregnancy.

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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 nugentmrs@yahoo.com 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!

Chris Nugent - Mom to grace 7-26-02 to 9-26-02 Full trisomy 18

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 life

Videos

Bringing a “not viable,” “incompatible with life” diagnosis to Term – Prenatal Hospice - Perinatal Hospice - Palliative Care - Comfort Care -Interruption (women choosing to interrupt their pregnancies)

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 hospice

Prenatal Hospice: A gift of time. following a terminal prenatal diagnosis.

Alexandra's House - 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 bereavement care.

Choices 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 birth.

Anencephaly-info - Resources for parents who carry their baby to term despite a poor prenatal diagnosis-Stories, Film and Slideshows, Songs, Interview/Shows

Anencephaly- Tips for Carrying to term Resources

Considering termination Resources & Support Immediate Support Perinatal Hospice Grief Support Inspirational Reading

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.