Factors Important to Parents at the End of their Infant's Life

The death of an infant is tragic,
and each family learns to cope in a different way.

Brosig, Pierrucci, Kupst, Leuthner
Infant end-of-life care: the parents' perspective

While coping with the end of a NICU newborn's life is a very difficult situation for parents, the process can be made easier with support from family, friends and the hospital care providers and utilizing various coping strategies.

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. The aspects of care that were considered to be most important to parents were:

• Honesty - from hospital staff
  
• Empowered decision-making - parents wanted to be involved
  
• Parental care - staff reminders to take care of themselves--the parents--as well as the baby.
  
• Environment
• Faith/trust in nursing care
• Physicians bearing witness - importance of having the physician present throughout the process of their child's death
  
• Support from other hospital care providers - chaplains, social workers, palliative care and child life specialists.
  

Researchers' Conclusions:
Results of this study suggest that most parents are able to effectively cope with the death of their infant and that there is much the medical staff can do to improve the end-of-life care experience for infants and their families.

Related Blog Article
Coping Strategies Used by Parents to Deal with their Child's Death

Source:
Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents' perspective. Journal of Perinatology. Online Publication 19 April 2007. http://www.nature.com/jp/journal/vaop/ncurrent/abs/7211755a.html

5/28 - Comforting Moment for NICU Parents - Loss of an Infant

As mentioned yesterday in the introduction to the Weekly Encouraging Messages, I am a great believer in the power of words to help those facing challenging times or a life crisis. I believe that:

Sometimes, it seems that all you need is the right quote, poem or inspirational message at the right moment to help provide perspective, insight and aid in surviving a life crisis.

...it can be helpful to read the words from others who have been there and survived.

Kirsti A. Dyer MD, MS
Journey of Hearts

Comforting Moments for NICU Parents
In addition to the Weekly Encouraging Messages, the NICU Parent Support Blog will also be featuring Weekly Comforting Moments for those NICU parents who are facing the end of their baby's life, or living on after their baby has died.

The comforting moments are designed to be short quotes for parents whose babies will die, are dying, have died that can be read quickly and hopefully bring a bit of comfort during this time of challenge.

---

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 Credit: Gary Cowles. Rock Poem. Royalty Free Use.

5/27 - Weekly Encouraging Message - Newborn Babies

I am a great believer in the power of words and have long felt based on my experiences dealing with people facing challenging events or a life crisis that:

Sometimes, it seems that all you need is the right quote, poem or inspirational message at the right moment to help provide perspective, insight and aid in surviving a life crisis.

...it can be helpful to read the words from others who have been there and survived.

Kirsti A. Dyer MD, MS
Journey of Hearts

NICU Parent Support Blog will be featuring Weekly Encouraging Messages or EM's to encourage NICU parents in finding hope and gaining perspective while facing their life challenge.

____________________________________________________________

This week's EM (Encouraging Message) is one of my favorite quotes about babies from Carl Sandburg:

A baby is God's opinion that life should go on.

Never will a time come when the most marvelous recent invention is as marvelous as a newborn baby. The finest of our precision watches, the most super-colossal of our supercargo planes don't compare with a newborn baby in the number and ingenuity of coils and springs, in the flow and change of chemical solutions, in timing devises and interrelated parts that are irreplaceable.

Carl Sandburg (1878-1967)
American Poet

May you enjoy your marvelous invention.

Scope of NICU Parent Support Blog and Site

A recent study of NICU parents found a large percentage of those completing the survey wanted more information made available to them about the organization of the NICU and whom to talk with about any questions and concerns that they had. One mother wrote,

Most parents in this situation want and need information as well as support! There should be a much more extensive library or articles and information accessible to parents.

The blog is here along with the NICU Parent Support website, the "My Baby's in the NICU: Now What?" e-Book (both due to be released by the end of June) and the series of NICU Parent Support Lens on Squidoo to provide information, encouragement and support for NICU parents as they find a way of making it through the NICU experience.

All of these resources have been created by a former NICU Parent, physician and professional educator to inform, reassure, calm, encourage and comfort parents coping with the admission of their baby to the Neonatal Intensive Care NICU.

Scope of the NICU Parent Support Site
The blog, the website and the lenses will cover many different aspects of the NICU experience from surviving the early days filled with shock and anxiety to the apprehension that parents often feel when taking their newborn home.

• Information - Articles, Research, Reflections from a Former NICU Parent
  
• Resources - Links to beneficial resources, other sites, latest research and products
  
• Encouragement - Weekly Encouraging Messages are posted to the blog.
  
• Inspiration - Messages and Links to other sites, other stories of inspiration
  
• Comfort - Comforting Messages and Thoughts are posted to the blog.
  
• Support - Through the blog, the website, the Squidoo lenses and the e-Book.
  

Several lenses have been created at Squidoo for NICU Parents:

• NICU Parent Support Site Lens - The overall organizing lens
• My Baby's in the NICU: Now What?
• Surviving Your NICU Experience - Advice for NICU Parents and Families
  
• CarePages - Connecting Friends and Family During Times of Challenge
  

Resources for NICU Parents Whose Baby is Dying
There are also resources, comfort and support for those parents who never get to take their newborns home, since some babies live out their entire short life in the NICU. Resources, suggestions and comfort are provided for those parents who must cope with the fact that their NICU baby is dying and then must face the death of a NICU baby.

• Information - Articles, Research, Reflections from a Former NICU Parent
  
• Resources - Links to beneficial resources, other sites, latest research and products
  
• Comfort - Comforting Messages and Thoughts are posted to the blog.
• Hope - Messages of hope and links to other sites, other stories of hope, even at the end of life
  
• Support - Through the blog, the website, the Squidoo lenses and the e-Book.

Two lenses have been created at Squidoo for NICU Parents whose Babies are dying:

• My NICU Baby is Dying: Now What?
• My NICU Baby has Died: Now What?
  

Welcome to NICU Parent Support Site Blog

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, http://www.nicuparentsupport.org/.

NICU Parent Support Site
We anticipate the NICU Parent Support Site will launch by the end of June.

The site is being created by a former NICU parent who is also a respected physician and professional health educator. NICU Parent Support Site and this accompanying blog will provide information, resources and support for parents facing the challenge of having their child in the NICU.

The eBook - The My Baby's in the NICU: Now What?
In addition, the site will also feature our soon-to-be released e-Book, My Baby's in the NICU: Now What?

This e-Book is the resource we wanted, but couldn't find when faced with the sudden, unexpected admission of our youngest daughter to the Neonatal Intensive Care Unit (NICU), or in our case the Intensive Care Nursery (ICN) soon after her birth.

Get Information, Be Reassured and Keep Updated

You can keep updated as to our progress on the NICU Parent Support Site and eBook by subscribing to this blog:

• Subscribing to this blog via the Posts (Atom) (use this link or link at the bottom of this blog entry).


• Subscribing to the NICU Parent Support eMail List using this link, or the link in the side menu.

By subscribing to this blog and/or the NICU Parent Support eMail List, in addition to receiving periodic information and inspirational messages, you will be the first to know when the NICU Parent Support site goes live and when our eBook, My Baby's in the NICU: Now What? becomes available.