Perinatal Hospice |
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Perinatal
Hospice |
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 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. |
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...
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
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Living with Trisomy 13
Focused on prayerful support and gifts of love
to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA 92649
info@LivingWithTrisomy13.org
| Text and graphics © LivingWithTrisomy13.org 2005-2007 All information found on this site was submitted to us directly by the families and used on this site with their permission. | |
| Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission. | |
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If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
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*Disclaimer All material on this site reflects our personal journey with raising a Trisomy 13 child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition. |
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