Information, Encouragement and Resources for NICU Parents Holding Babies at the End of Life
This lens is developed to support the 1,000's of NICU Parents each year who must face the difficult realization that their NICU baby will not be discharged to home because their NICU baby is dying. Each year nearly 30,000 infants die in the United States, many of them are in the Neonatal Intensive Care units (NICU) and Intensive Care Nurseries (ICN).
This lens is one resource that we hope no NICU parent will every need to read. This is dedicated to the NICU parents who are holding the littlest ones at the end of a very brief life.
The lenses in the NICU Parent Support Site Series have been developed to inform, support and encourage current NICU Parents--those whose newborn babies have been hospitalized in the Neonatal Intensive Care Unit.
One of Our Squidoo Lenses for NICU Parents - My NICU Baby is Dying: Now What?
With A Consoling Audio Message from the Lensmaster
The focus of lens is on helping NICU parents manage during one of the most difficult of all NICU experiences--the final days or weeks of your newborn's life.
If you have discovered this lens, it is likely because you have been told that your NICU baby is dying...
You can listen to a specially recorded brief, audio message from the lensmaster by clicking on the arrow image to start and then clicking on the arrow again:
Wishing you strength during this most challenging time,
Comfortdoc
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Photo Credits: Levi Szekeres. Headphones. Royalty Free Use.
NICU Parent Support Site Series - The Initial Days and Weeks
Information, Resources & Support for NICU Parents to Manage in the NICU
The are the first two lenses of the NICU Parent Support Series, developed to provide information, resources and support to NICU Parents those who have their newborns hospitalized in the neonatal intensive care unit.-
How Will I Survive the NICU? Advice for NICU Parents and NICU Families
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This lens was created to help parents survive in the NICU after they have gotten past the initial shock period, covered in the first lens My Baby's in the NICU: Now What? The focus of this lens is on the later phases of the NICU experience--the next...
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My Baby's in the NICU: Now What?
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The first lens in a series of lenses from the NICU Parent Support Site created to provide information, support, encouragement and resources for parents and Families who suddenly find that they have a NICU Baby--a newborn hospitalized in the Neonatal...
Factors Important to Parents Coping with the Death of their NICU Infant
Coping Strategies for Managing the Death of a Child
- Factors Important to Parents at the End of their Infant's Life
- Results from a recent study of NICU parents to identify factors that were important to them in caring for their infant at the end of life.
- Coping Strategies Used by Parents to Deal with their Child's Death
- Results from a recent study of NICU parents to determine the coping strategies that helped them deal with the death of their infant.
Resources to Help Parents Anticipating the End of a Baby's Life
- Anticipating the Loss of a NICU Baby
- From the March of Dimes NICU Family Support Program their section on Grief and Loss. This section offers many suggestions to help parents make decisions about how to spend your remaining time together with your baby.
Create a Custom CarePages from NICU Parent Support Site
Connecting Families During Challenging Times
CarePages is an easy way keep your family and friends connected and updated when your NICU baby is in the hospital.-
CarePages - Connect Friends and Family During Times of Challenge
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CarePages unique service allows you to create a personal, private web page to help family and friends communicate when a loved one is facing illness whether at the beginning of life as a newborn, at the end of life, or somewhere in between. Creating...
Creating Moments with Your Dying Baby
Memories to Last a Lifetime
- We do not remember days;
We remember moments.
Cesare Pavese
Photo Source: Sona Psotová. Intimate. Royalty Free Use.
Creating Memories for a Dying NICU Baby Through Photography
Photographic Memories to Ease the Grief
- Babies Who Die From Terminal Illness Live On Through Photographs
- An informative article about one of the innovative non-profit organization seeking to ease grief of parents by creating stunning visual memories of newborns who have been hospitalized for terminal conditions.
- Now I lay Me Down To Sleep - Infant Bereavement Photography
- Now I lay Me Down To Sleep (NILMDTS) is a non-profit organization devoted to offering gentle and beautiful photography and videography services. Their services are available to all parents experiencing the death of a baby. There are no fees for creating these photographic memories.
- Welcome to Touching Souls
- Photographer Todd Hochberg of Touching Souls Bereavement Photography has supported parents experiencing perinatal loss, as they say goodbye to their babies, since 1997. The photographs of babies with their grieving parents are available as valuable emotional mementos for families in Chicago.
- IMI National Guidelines on Bereavement Photography
- A pdf file with an informative review on the topic of Bereavement Photography that includes helpful guidelines for potential photographers from the Institute of Medical Illustrators (IMI) an organization providing Clinical Photography, Art, Graphics and Video in Healthcare. This may be useful if a professional photographer is not available and the NICU staff needs to take the photos.
Online Resources for NICU Parents Whose Baby is at the End of Life
Resources to Help Parents Facing the End of a Baby's Life
- Remembering Your Newborn Baby
- This resource from the March of Dimes Pregnancy & Newborn Loss section provides suggestions of ways to remember your baby before they are gone, including gathering memories and mementos. Many of these suggestions can be done during the final phases of life.
- Ways of Creating Lasting Memories
- A helpful resource to assist parents and families in creating lasting memories and tangible mementos of their child from Share: Pregnancy & Infant Loss Support.
- Creating Memories of Your Dying Baby
- This page provides many helpful suggestions and resources for creating precious memories with your baby. The site was created in 2000 by a mother whose daughter had anencephaly and died shortly after birth.
NICU Parent Support Site Series - The Final Days
Information, Resources & Support for the End of a NICU Baby's Life
This final lens one we hope NICU parents will never have to use. Thousands of parents and families each year will be in need these resources.This lens is provided to help you and your family during this most difficult life challenge.
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My NICU Baby has Died: Now What?
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Many parents consider the loss of a child to be the highest level of loss. The information on the site cannot take away the intense pain and sorrow you are feeling. Instead I offer information, resources and support that others who have been in simil...
NICU Expo - By NICU Parents for NICU Parents
Raising Awareness about Parenting in the NICU
Coming in November the NICU Expo an online event for the Parents of NICU Babies & the Providers that care for them.-
NICU Expo - For Parents of NICU Babies & the Providers that Care for Them
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The NICU Expo is is an Online Event being hosted by three former NICU Parents and NICU Parenting Experts to raise awareness about parenting in the Neonatal Intensive Care Unit or the NICU. The NICU Expo was to have been held during November, which is...
Resources for End-of-Care for NICU Babies and Their Parents
When Palliative Care Comes to the NICU
- Perinatal Loss - from ChiPPS Pediatric Palliative Care Newsletter
- This page includes a link to a collection of PDF files selected as part of a special topics issue on Perinatal Loss from February 2007. The collection includes selections on "A Family's Journey with Newborn Life and Death" and "A Parents' Guide to Palliative Care." This newletter is from the ChiPPS, the Children's Project on Pediatric Palliative/Hospice Services of the National Hospice and Palliative Care Organization.
Do Not Stand At My Grave and Weep - The Poem, The Song and The Book
Words of Comfort During Challenging Times
A new Book collection with quotes, poems and readings to comfort anyone grieving a loss or coping with a challenge.-
Do Not Stand At My Grave and Weep - A Poem, A Song and A Book to Comfort
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This lens is dedicated to the favorite bereavement poem, "Do Not Stand At My Grave and Weep" words of sympathy that have brought comfort to many since it was written. This beloved poem has also been put to music as a stirring song and most...
Online Resources to Support Grieving NICU Parents and Families
Resources to Help After the Death of a NICU Baby
- Remembering Your Newborn Baby
- This resource from the March of Dimes Pregnancy & Newborn Loss section provides suggestions of ways to remember your baby after the death, including gathering memories and mementos. Many of these suggestions can also be done after the baby is gone.
- Creating Memories and Memorials
- A beneficial resource for helping parents and families create lasting memories and tangible mementos of their child from Share: Pregnancy & Infant Loss Support. They also offer suggestions for planning memorial or funeral services.
- Grieving in the NICU
- This organization focuses for NICU Parents on grieving in the NICU. They offer information and resources for the families of babies who never graduate from the NICU. Site includes information on the DVD "Grieving in the NICU: Mending Broken Hearts When a Baby Dies."
- Men and Women Grieve Differently
- This resource from the March of Dimes Pregnancy & Newborn Loss section provides helpful insights for the NICU couple in understanding the men and women facing the same loss can grieve very differently.
- From Hurt to Healing - Bereavement Brochure
- The March of Dimes offers a free brochure, "From Hurt to Healing" for parents who have experienced the loss of a baby between conception and the first month of life.
- The Double Sorrow of the Grandparents
- This resource from the March of Dimes Pregnancy & Newborn Loss section describes the double sorrow faced by NICU Grandparents dealing with the loss of a grandchild and the impact on their own child, the NICU Parent.
- Dealing With Others at a Time of Loss
- This resource from the March of Dimes Pregnancy & Newborn Loss section offers information and suggestions to help NICU Parents in dealing with family and friends following the loss of their baby.
- The Jackson L. Graves Foundation
- Former NICU Parents created the Jackson L. Graves foundation in memory of their son. Their foundation is an example of turning tragedy into a lasting tribute. The focus of the foundation is on improving neonatal intensive care, with a focus on long-term, complex NICU care and family-centered support.
Updates to the NICU Parent Support Blog
Reflections, Ruminations & Resources from a Former NICU Parent and Grief Educator
- NICU Parent Support Site Blog
- The latest reflections, ruminations and resources from respected physician, educator, author and former NICU parent on the NICU Parent Support Site Blog.
Being with a Loved One at the End of Life
Be Present - Be Human - Be Aware - Be There
Just Be
Be yourself and relate person to person.
Be ready to listen again and again.
Be respectful.
Be aware of feelings and non-verbal cues.
Be present.
Be comfortable with silence.
Be human.
Be genuine.
Most of all--Be there.
© Kirsti A. Dyer, MD, MS
Music To Use in Transitioning at the End of Life
Using Music at the End of Life in the Neonatal Intensive Care Unit
This list is a collection of soothing music that I have found which can be used to comfort parents and aid NICU babies in their final transition.
Before using any of these with your newborn, be sure to listen to the music yourself first.
Gifts of the Angels
There is an ethereal out-of-this world quality to this music on this CD. Listening to it there is a sense that of floating out in space and hearing the angels sing. Somehow in Gifts of the Angels Steven Halpern managed to capture the voices of the angels.
Amazon Price: $13.99 (as of 07/20/2008)
Angel Voices
The latest CD from a young boys who make up the group Libera. The music is soothing and comforting combining mystical chords and beautiful harmonies. The voices of angels seem to emanate from this young group of London school boys.
Amazon Price: $49.99 (as of 07/20/2008)
LiberaVisions
The music of Visions is a unique, exquisite sound from a young boys who make up the group Libera. The music is soothing and comforting combining mystical chords and beautiful harmonies to bring many classical pieces to a new audience.
Amazon Price: $9.97 (as of 07/20/2008)
Transitions
Steven Halpern's music on this CD was written to provide comfort and solace during times of transitions. The music "creates a safe and supportive ambiance, a sacred sonic space for the prayers, meditation and mindfulness that support us and give us hope."
Amazon Price: $16.98 (as of 07/20/2008)
Transitions: Soothing Music for Crying Infants(Transitions Music)
One of a series of CD's developed under the guidance of physician Fred Schwartz. Digital samples of actual womb sounds, barely discernible female vocals, and the soft wash of other atmospheric sounds are combined to create music to reduce the of infant children and their parents.
Amazon Price: $11.99 (as of 07/20/2008)
My NICU Baby is Dying - A Tough Topic
This lens (and the related lens on My NICU Baby has Died) has been included in the group on difficult or Tough Topics.I am honored to be recognized for having written a lens on a difficult or tough topic that will be useful to someone.
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Tough Topics Headquarters
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Tough Topics Some topics, even though they are hard, have stories that deserve to be told. Good lenses with comprehensive information can be excellent reference points for students, teachers, activists, politicians, journalists.
NICU Parent Support Site Blog
Reflections, Ruminations & Resources from a Former NICU Parent and Grief Educator
The NICU Parent Support Site Blog was created as a way to supply updates, provide information, send inspirational messages and feature NICU resources as part of the NICU Parent Support Site.
Fetching RSS feed... please stand byRecipient of the All4Care Award - Lens & Lensmaster Award 2007 for Charity Work
My NICU Baby is Dying: Now What? An Award Winning Site
I am honored to be among the first to receive the All4Care award, a new award for a Lens or Lensmaster who is doing outstanding work for Charity sponsored by Janusz Biela.Not only was this lens nominate, but the entire NICU Support Site Lens Series and the CarePages lens were all recognized.
These lenses have been developed to provide information, resources and support for NICU Parents while generating royalties to benefit the March of Dimes NICU Family Support Program.
Comforting Moments for NICU Parents
Words of Sympathy to Console During This Time of Loss
- Those who have lost an infant are never, as it were, without an infant child. Their other children grow up to manhood and womanhood, and suffer all the changes of mortality; but this one alone is rendered an immortal child; for death has arrested it with his kindly harshness, and blessed it into an eternal image of youth and innocence.
James Henry Leigh Hunt
Photo Source: Adam Ciesielski. Mother and Child Sculpture. Royalty Free Use.
Updates on News in Neonatal Pallliative Care from Google
The latest information on end of life care for newborns
Books On Caring for NICU Babies at the End of Life
Books Resources Available on Amazon for NICU Parents
Remember that purchasing NICU products recommended through this lens also benefits the March of Dimes NICU Family Support Program.
When Hello Means Goodbye
A guide for parents who have lost an infant before, after or during childbirth. Also recommended by parents whose babies are diagnosed with a terminal condition.
Amazon Price: $3.00 (as of 07/20/2008)
Born Too Soon
Written by a NICU baby's mother, the author looks at conditions on the neonatal intensive care unit, as well as the intimate, intense relationships that develop between parents and their babies, between parents and their doctors, and between husbands and wives.
Amazon Price: $12.60 (as of 07/20/2008)
Before Their Time: Lessons in Living from Those Born Too Soon
The author tells the stories of six infants born after only 22 weeks' gestation, their parents, and the staff, primarily the nurses, of the neonatal intensive-care unit that treated them. One infant dies and two are left with physical or mental damage, the book recounts miracles that occurred all of the babies' stories.
Amazon Price: (as of 07/20/2008)
Coming to Term: A Father's Story of Birth, Loss, and Survival
Written by a freelance writer, editor and NICU father of twins the author gives a poignant account of the events following the twins through birth, the death of the smaller one, Nina, and the survival and ultimate health of Josie.
Amazon Price: $25.00 (as of 07/20/2008)
Reader Feedback on the My NICU Baby is Dying: Now What? Lens
Your place for comments, messages, blessings and suggestions
If you find the information on the site helpful or useful to you or your family, please be sure to pass on the word about the site (email), rate this site and leave a message (Reader Feedback).
Do make sure to add your feedback, comments, blessings and suggestions for topics or improving the My NICU Baby is Dying: Now What? lens.
While you are waiting for this lens to develop, subscribe to the NICU Parent Support Blog or the NICU Parent Support eMail List for periodic updates, articles, inspirational messages and NICU resources.
Remember this lens benefits the March of Dimes NICU Family Support Program.
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Forgiven
What a good lens~ Please don't forget to pray for these families. Pray for healing and comfort. 5 stars! Posted September 03, 2007 |
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Brent_S
You just made me aware of something I really didn't know much about. Thanks for opening my eyes. Posted July 30, 2007 |
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Nicegoogoo
great and a wonderful lens and liked the content and rated 5 stars for this lens. Posted July 29, 2007 |
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Enchanted_Ways
Wonderful lens, though my heart is breaking...5 Stars Posted July 27, 2007 |
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Comfortdoc
Lady GotRocks Posted July 18, 2007 |
