Home » Parenting & Kids » General Parenting

My NICU Baby is Dying: Now What?

Ranked #1,344 in Parenting & Kids, #43,610 overall | Donates to Squidoo Charity Fund, March of Dimes

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

Your lensmaster for this section is a Grief, Loss and Bereavement expert who is also former NICU Parent.

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

____________
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.
Loading

Factors Important to Parents Coping with the Death of their NICU Infant

Coping Strategies for Managing the Death of a Child

In a study published in April 2007 in the Journal of Perinatology researchers surveyed parents to identify factors that were important to them in caring for their infant at the end of life. These articles discuss the factors as well as helpful coping strategies used by parents.
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

When it becomes clear that your baby will not be leaving the NICU alive, there are many ways that parents can make these final moments together meaningful and memorable. These article provide information to help parents decide how to spend your remaining time together.
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.
Loading

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

There are several organizations available that are helping to ease the grief of NICU parents by taking professional photographs of dying newborns to create a tangible reminder of the brief moments shared between parent and child.
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

This list includes some of the most beneficial websites that provide information for NICU Parents caring for their newborn during the difficult time of having an infant who is in the final stages of a brief 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.
Loading

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.
Loading

Resources for End-of-Care for NICU Babies and Their Parents

When Palliative Care Comes to the NICU

End-of-life Care, or palliative care, is a relatively new topic in the field of pediatrics and especially in regards to perinatal losses or the end of life for a NICU Baby. This collection of articles will help parents understand more about palliative care for newborns.
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.
Loading

Online Resources to Support Grieving NICU Parents and Families

Resources to Help After the Death of a NICU Baby

This list includes helpful websites and organizations that provide information, suggestions and resources for Grieving NICU Parents coping with the challenges of living on after their NICU baby has died.
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

It seems that there has been an intermittent problem with the direct RSS feed for the NICU Parent Support Site Blog, so until this glitch is fixed, you can access the blog through the link below:
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

This short poem was written for those coping with adults facing the end of life, but many of the aspects still apply to being with a baby at the end of life.

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

Music thanatology is the practice of providing musical comfort, at the bedside of patients near the end of life. This is done with a person playing at the bedside, or by playing music as to help soothe and comfort as the patient is dying.

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.
Loading

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.
Loading

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.
Loading Fetching RSS feed... please stand by

Recipient 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

These links provide information on the latest news on the area of neonatal palliative and recognizing and improving end of life care for children and babies as determined by Google.
Q&A: A Few Minutes with Susan Gennaro
Congenital heart surgery in infants: Effects of acute kidney injury on outcomes
FELLOWS IN THE NEWS
Powered by Google

Books On Caring for NICU Babies at the End of Life

Books Resources Available on Amazon for NICU Parents

These are a few of the books will be beneficial to NICU Parents coping with a NICU newborn in the final stage of a short life.

Remember that purchasing NICU products recommended through this lens also benefits the March of Dimes NICU Family Support Program.
Loading

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.

submit
Show All

by

Comfortdoc

I am the parent of a former NICU baby, a physician, health educator, author & founder of the NICU Parent Support Site. I am also a recognized Grief,... more »

Feeling creative? Create a Lens!

Explore related pages

Related Tags