Comfort and Support for Parents Who have Lost a NICU Baby
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 similar situations have found to be helpful during their times of loss, in the hopes that it will ease your loss even slightly.
This belief in information to aid the grieving process is the same one expressed by perinatal bereavement and mourning specialist, Dr. Elizabeth K. Best.
- While little can assuage the difficult and forgotten grief surrounding stillbirth and neonatal death, information can be helpful regarding the normal feelings and experiences which leave parents in an emotional and spiritual wilderness.
Children Don't Die Before Their Parents - Do They?
The Loss of a Child is the Loss of the Future
Children are not supposed to die...Parents expect to see their children grow and mature. Ultimately, parents expect to die and leave their children behind...This is the natural course of life events, the life cycle continuing as it should. The loss of a child is the loss of innocence, the death of the most vulnerable and dependent.The death of a child signifies the loss of the future, of hopes and dreams, of new strength, and of perfection.
Quote Source:
Arnold JH, Gemma PB. A Child Dies A Portrait of Family Grief. Philadelphia, PA: The Charles Press Publishers. Second Ed. 1994.
Photo Source: Phil Landowski. Dust to Dust. Royalty Free Use.
Neonatal Death - An Overview
A Quick Reference Sheet for Parents
- Quick Reference: Neonatal Death
- This webpage has an overview of the most common causes, statistics and what to expect following a Neonatal Death--death within the first 28 days of life.
Raising Awareness of Congenital Heart Defects
A Day for Hearts - Congenital Heart Defects (CHD) Awareness Day
According to the March of Dimes Heart defects are the most common birth defect-related cause of infant death in the first year of life. Heart defects cause nearly one-third of infant deaths. These lenses help to raise awareness of CHD.-
A DAY FOR HEARTS - Congenital Heart Defects Awareness Day
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A DAY FOR HEARTS on February 14th gives our vibrant networked online community the chance to participate in a humane cause: Promoting Awareness of Congenital Heart Defects. Congenital Heart Defects (CHD) are a lethal constellation of heart birt...
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NICU Parent Support Site Series - The Final Days
Information, Resources & Support for Parents Facing the End of a Baby's Life
The lens on My NICU Baby is Dying: Now What? offers additional resources and suggestions for making it through this difficult time, creating memories and planning memorials.If you haven't looked at this other lens, I would recommend taking a peak a...
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My NICU Baby is Dying: Now What?
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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 St...
Ethical Issues in Neonatal Medicine
- Ethical Issues in Neonatal Care
- From eMedicine Ethical Issues in Neonatal Care explores many of the difficult questions about the current state of practice in neonatal medicine in the United States.
Comforting Thoughts for NICU Parent
Words of Sympathy to Console You in This Time of Great Loss
I know for certain that we never lose the people we love, even to death. They continue to participate in every act, thought and decision we make. Their love leaves an indelible imprint in our memories. We find comfort in knowing that our lives have been enriched by having shared their love.Leo Buscaglia
Photo Source: Sanja Gjenero. Heart in Sand. Royalty Free Use.
Words of Sympathy and Comfort for NICU Parents
Comforting Words on the Loss of a Baby
- Comforting Message - Struggling for Your Dreams
- A reminder that sometimes when were are struggling for our dreams, we need to let go of the old dreams and begin dreaming new ones.
- Comforting Message - Whispered Silent NICU Prayers
- A thought about the many whispered NICU Prayers.
- Comforting Message - All that You Deeply Love
- A simple comforting thought.
- Comforting Message - It's Only Words...
- Words can provide a source of solace, hope, comfort and reassurance...
- Comforting Message - Information Helps During Times of Loss
- Information cannot take away intense pain and sorrow it can help parents understand the responses to loss.
- Comforting Message - Loss of an Infant
- The lost an infant creates an immortal child.
- Comforting Message - Death does not end the Relationship
- A reminder of some of the newer ways of thinking, death may end a life, but it does not end the relationship.
- Comforting Message - Living on in the Hearts
- Some times the simplest of messages can be the most comforting during times of loss.
- Comforting Message - Coffee helps in any Crisis
- While Coffee may not help to solve the crisis, stopping for a coffee break gives you a few moments to pause and reflect upon the crisis.
Understanding Grief and Bereavement
Why do I feel this way?
- General Information on Loss, Change & Grief
- This page, from my Journey of Hearts site, provides general information on how we all join a club, no one planned on joining...the Grief Survivors Club.
- Acute Grief Response
- This page describes the normal response to a loss, the Acute Grief Response. It includes physical, emotional, social and behavioral symptoms that a grieving person typically experiences. Also from Journey of Hearts.
- Grief and Bereavement Medical Reference Medical Encyclopedia Information
- An excellent review that helps to put Life and Death in Context focusing on Grief and Bereavement. This resource from the Medical Encyclopedia Info on Grief and Bereavement provided by is provided by the Medical Reference Medicine Online.
- Acute Stress Disorder
- NICU Parents are at risk for developing Acute Stress Disorder (ASD). ASD is an anxiety and behavioral disturbances that may develop within the first month after exposure to an extreme trauma, such as the hospitalization of their newborn to the Neonatal Intensive Care Unit.
Comforting Thoughts for NICU Parent
Creating Moments - To Remember Moments
- We do not remember days;
We remember moments.
Cesare Pavese
Photo Credit: Kirsti A. Dyer. Sibley Sunset Moment.
Creating Memories to Remember Your Baby
Remembering for a Lifetime
- 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.
- Remembering Your 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.
- Virtual Memorials
- Virtual Memorials is one of the original online memorial services where you can create an online memorial page to shares the memories of your NICU Baby.
- 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.
A Way of Creating Memories - Bereavment Photography
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Bereavement Photography for Dying Babies
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There are several organizations that help to ease the grief of NICU Parents and other parents by taking professional photographs of dying newborns. Photographs create a tangible reminder of the brief moments shared between parent and child. Offering...
Loss, Grief and Bereavement in the NICU
Grief and Sorrow in the NICU
- Grieving in the NICU
- The Grieving for Babies 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."
- The Forgotten Grief: Information for Parents
- An extensive overview of the Grieving process that Parents may experience following the death of a NICU child from noted Perinatal Bereavement and Mourning specialist, Dr. Elizabeth K. Best.
- 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.
We Were Gonna Have a Baby, But We Had an Angel Instead
We Were Gonna Have a Baby, But We Had an Angel Instead
Amazon Price: $7.95 (as of 07/25/2008)
Published by Griefwatch, this book is a good way of helping siblings cope with the loss of a newborn baby or stillbirth.
This special book is helpful for all members of a family who have experienced a pregnancy loss.
Resources for Coping with the Loss of a Child
While the origin of the loss may be different, the emotions felt by grieving parents after the death of a child are the same.
- The Death of a Child, The Grief of the Parents: A Lifetime Journey
- A helpful online booklet is available as a series of webpages and also as a downloadable pdf file. It is from the National SIDS and Infant Death Resource Center. The booklet takes an in depth look at the lifetime journey of grief experienced by parents following the death of a child.
- Understanding Grief...When a Child Dies
- An online brochure is available from one of the leading organizations to help parents cope with the loss of a child--the Compassionate Friends (TCF). The brochure helps parents understand the grief they experience when a child dies. All TCF brochures were written by bereaved parents, grandparents or siblings.
- Stillbirth, Miscarriage and Infant Death
- An online brochure from the Compassionate Friends (TCF) is for parents who have experienced a stillbirth, miscarriage or infant death. All TCF brochures were written by bereaved parents, grandparents or siblings.
- A Quiet Refuge - Home Page
- A Quiet Refuge offers resources for grieving parents coping with the sudden loss of a pregnancy or death of a child.
- The Light Beyond - Coping With Death, Grief And Loss
- This new website was developed to help people cope with grief and loss following a death. The site offers a free useful guide for the bereaved and those who care about them.
- Do Not Stand At My Grave And Weep
- Over 250 poems, quotations and readings carefully selected that can be used for funerals or memorial services. The collection contains both timeless words of wisdom and the work of more contemporary poets, including your lensmaster.
- Pregnancy and Infant Loss - Spreading awareness one ribbon at a time
- A variety of resources to spread awareness about the impact of pregnancy and infant loss. Also provides a variety of crafting supplies for families grieving the loss and death of a baby.
- Remembering Our Babies, Pregnancy and Infant Loss Support
- Remembering Our Babies site was created to provide support, education and awareness for those who are suffering or may know someone who has suffered a miscarriage, an ectopic pregnancy, a still birth, or the loss of an infant. October 15 is the day each year when pregnancy and infant losses are remembered.
Mommy, Please Don't Cry: There Are No Tears in Heaven
Mommy, Please Don't Cry: There Are No Tears in Heaven
Amazon Price: $10.39 (as of 07/25/2008)
Written by a mother who experienced a stillbirth, this book is a comforting resource for grieving parents.
Author Linda DeYmaz writes "Our stories are all different, but our pain is the same. We are mothers who will forever grieve the loss of our children."
Online Resources for Remembering Your NICU Baby
Post a Message, Create a Memorial
- Light a Candle to Remember Your NICU Baby
- This online memorial page allows you to light a candle online and publish a brief memorial in memory of your NICU Baby. Light a candle in your baby's memory and share your thoughts.
- Virtual Memorials
- Virtual Memorials is one of the original online memorial services where you can create an online memorial page to shares the memories of your NICU Baby. Virtual Memorials provides a place where every person can be honored free of charge. Free memorials consists of unlimited text and a guestbook.
- Empty Cradles - Tiny Stars in Heaven
- An online baby memorial for miscarriage, stillbirth, infant death and SIDS for grieving parents who suffered a pregnancy loss or a child's death. This site allows you to creation a small online memorial for your baby by placing a tiny star in their online heaven.
- Online Memorials, Comfort & Support After Loss
- The Christian Memorials site allows parents to create online memorials for infants and stillbirths. These memorial Web sites are dedicated to beautiful souls who never had a chance at life but left behind much love and hope. Option for a free online obituary.
Do Not Stand At My Grave and Weep - The Poem, The Song and The Book
Useful Resources for Writing a Eulogy, Funeral Speech or Memorial Speech
A new Book collection with quotes, poems and readings to comfort anyone grieving a loss or coping with a challenge or dealing with the death of a beloved baby.-
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 for Parents Who Have Lost a Baby
Forums, Sharing Rooms and Other Resources for Grieving Parents
- Forum for Families Who Have Lost a Baby
- Part of the March of Dimes Share Your Story website. This is a forum especially for families who have lost a baby, designed to be a place for comfort as parents and families grieve the loss of their baby.
- Perinatal Loss Resources
- This link provides a listing of many of the other organizations and bereavement resources collected by the March of Dimes.
- March of Dimes Chapter Locator
- Some parents find attending support groups to be helpful in their grieving process. This site provides links to all of the local March of Dimes chapters. You can contact your local chapter to check on the availability of groups.
- BabySteps
- BabySteps is named after the baby steps that form the long and difficult road to recovery from the loss of a child. The site offers Bereavement Sharing Rooms and Remembrance Rooms for the Bereaved. Sponsored by BabySteps Children's Fund.
- Support Groups at Griefnet.org
- GriefNet provides online support those dealing with grief and loss including a variety of online support groups. Their griefparents neonate email support group is for parents whose children died due to miscarriage, still birth, or died as neonates (soon after being born).
What to Say or Do When A Parent Has Lost a Baby
How to Offer Your Support During a Time of Loss
- What can I *say* when a NICU baby dies?
- This article offers some suggestions for finding words that may bring comfort to a parent who has lost a NICU baby.
- What can I *do* when a NICU baby dies?
- A follow up to the What can I *say* this entry from the NICU Parent Support Blog looks at some helpful things you can *do* to help a NICU parent.
- Words of Comfort for a Pregnancy Loss or Miscarriage
- Helpful suggestions from the Healing Hearts of Baby Loss Comfort Site. This article includes suggestions of ways to comfort someone who has experienced a pregnancy loss or miscarriage. It also includes some of the less than helpful expressions.
Books on NICU Losses Available on Amazon
When A Baby Dies: The Experience of Late Miscarriage, Stillbirth and Neonatal Death
Amazon Price: $23.95 (as of 07/25/2008)
An Empty Cradle, a Full Heart: Reflections for Mothers and Fathers After Miscarriage, Stillbirth, or Infant Death
Amazon Price: $8.76 (as of 07/25/2008)
Grieving the Child I Never Knew
Amazon Price: $10.39 (as of 07/25/2008)
When a Meeting is also a Farewell: Coping with a Stillbirth or Neonatal Death
Amazon Price: $39.95 (as of 07/25/2008)
What Can I Say or Do for NICU Parents?
Supporting the NICU Parent
These updated articles from the Type-A Mom website offer suggestions for things to say and do for a NICU Parent.
- What to Say or Do for a NICU Parent
- When a baby has been admitted to the NICU, family and friends can fear saying or doing the wrong thing so much that they don't do anything at all; this is not helpful for a NICU parents who could use support. From the Type-A Mom site.
- What Can I Say When a NICU Baby Dies?
- During a time of loss, such as the death of a newborn, it can be difficult to know what to say. Friend and family may fear saying the wrong thing so much after the death of a newborn that they may not say anything at all. From the Type-A Mom site.
Comforting Thoughts for NICU Parents
Held in the Heart...Forever
- What we have once enjoyed and deeply loved
we can never lose,
for all that we deeply love
becomes a part of us.
Helen Keller
Photo Source: Craig Jewell. Flower Arrangement/Bouquet. Royalty Free Use.
Boon Too Soon in the Amazon Spotlight
Born Too Soon
Amazon Price: $12.60 (as of 07/25/2008)
A moving story written by Emily's mother shows that courage can come in very small packages.
The book details the infant's 53-day valiant but vain struggle to live.
Looking at the High Rate of Premature Births
- A QUEST to Discover Why Such a High Preterm Rate in the U.S.
- Despite all of the high-tech medical and scientific technology, the United States still has the highest rate of premature births of any developed nation in the world. Why is this the case? QUEST met with some of the San Francisco Bay Area researchers working to answer that question.
How to Write a Condolence Letter or Note
Written sympathy notes and condolence letters can be very helpful for grieving parents.These lenses provide resources and examples for helping you send your sympathies during a time of loss.
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How to Write a Condolence Note or a Sympathy Note
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Taking a bit of time to write a condolence note or condolence letter can be a great source of comfort and provide a gift of healing for a friend or a loved one who is grieving a loss. According to research by Hallmark, Americans send nearly 125 mill...
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How to Write a Condolence Letter
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Finding the right words to write a condolence letter or sympathy note may be challenging, yet the benefits can be immeasurable. A well-written, heart-felt condolence letter is a show of your support and sympathy for the person grieving the death of a...
My NICU Baby has Died - A Tough Topic
This lens (and the related lens on My NICU Baby is Dying) 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.
Other Comforting Lenses
Sites on Sorrow and Bereavement
These other squidoo lenses provide other thoughts and ideas for NICU parents and family who have lost a baby.-
Meaningful Bereavement Gift Ideas
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It's hard to know what to do when a friend loses a loved one. But you can be a light in the darkness for your friend if you spend a few minutes to find a meaningful bereavement gift to give. When you take the time to give a more personal gift, y...
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Sympathy & Bereavement Gifts
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When someone you know loses a loved one, it's often difficult to know what to say - sympathy is a hard sentiment to articulate for most of us. Because the right words are not easy to find, bereavement gifts can be a good way to express condolence. ...
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When Life Won't Stop Hurting
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The road of life is paved with many sorrows. The loss of a loved one through death or divorce is among the most painful experiences humans face. Fortunately, there is help for this most difficult of journeys. I have collected a number of...
Final Thoughts on the Grieving Process
You Never Get Over Grief...You Learn to Live with the Loss
After a significant loss, like the death of a child, you will be forever changed. Your life may never be the same.Grief is not like a cold or an illness that one "gets over," Rather grief is something that can get better over time as one learns to live with the grief.
According to Kenneth J. Doka:
- We do not get over grief. We learn to live a diffferent life.
But over time, we eventually learn to live with the loss.
Photo Source: Kirsti A. Dyer. Tears on a Love Rose.
Remembering Angels from Pregnancy & Infant Loss
Remembering Your NICU Baby
More Information on the NICU Parent Support Site
Visit the website, subscribe to the NICU Parent Support Blog or the NICU Parent Support eMail List.
- NICU Parent Support Site
- The NICU Parent Support Site was created by a physician, author & former NICU Parent to provide information, resources & encouragement to reassure and support NICU Parents and Families.
- NICU Parent Support Site Blog
- Reflections, Ruminations & Resources from respected physician, educator, author and former NICU Parent are shared in the NICU Parent Support Site Blog.
- NICU Parent Support eMail List
- Subscribe to the NICU Parent Support eMail List and receive periodic updates, articles, inspirational messages and featured NICU resources.
Reader Feedback on the My NICU Baby has Died: 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 has Died: Now What? lens.
Remember this lens benefits the March of Dimes NICU Family Support Program.
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SonjaHelga
I have just finished reading (for the second time) the book "Born Too Soon" A true story of a child who died in NICU. The author is: Elizabeth Mehren. The book was published back in 1991, but it is an amazing insight into life and struggle in NICU. My heart goes out to all who have lost a child, no matter what age. Posted February 18, 2008 |
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the-light-beyond
Thanks Kirsti, this is a very valuable lens on a tough topic. Posted August 14, 2007 |
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Aika
such a wonderful lens, sad to hear about this kind of topic. Actually I have 2 sisters die before their birth. :( 5*, great job Posted August 01, 2007 |
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KimGiancaterino
Thank you for this insight. It's hard to know how to support friends and family in this situation. Your suggestions are sensitive and practical. Posted July 30, 2007 |
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Wonderful job! You have a very informative lens. I voted 5 stars - I invite you to check out my lens too Live Streaming Video Posted June 17, 2007 |
