Supporting Parents and Relatives In Neonatal Grief (S.P.R.I.N.G.)

S.P.R.I.N.G. (Supporting Parents and Relatives In Neonatal Grief) is an organization in the U.K. that provides many unique resources and local opportunities for parents experiencing neonatal grief.

Supporting Parents and Relatives In Neonatal Grief was established to provide support to parents and relatives who have experienced the death of a baby during pregnancy, at, or just after birth. This includes miscarriage, stillbirth and termination for foetal abnormality.

S.P.R.I.N.G. is run by a unique combination of bereaved parents, relatives and caring professionals from the Poole Maternity Unit in Poole, Dorset in the U.K.

Their aim is to befriend and support through grief. This is achieved by offering counseling, befriending and monthly support meetings.

Little Angels - Knitting for the Poole Maternity
Supporting Parents and Relatives In Neonatal Grief also encourages knitters to kit and donate baby clothes and teddies for their fundraisers.

On their website they have two knitting patterns on the site, one for this cute teddy bear and another one for booties and hat.

Knitting Angels is a great idea for other NICU's and NICU families to adopt in the United States and other countries.

More Knitting Projects
If you are interested in sharing your knitting or crocheting talents with NICU newborns, contact your local NICU and see if there is an organized program there.

• Calvin's Hats - Knitting tiny hats for babies who are born to early to survive.
• Knit One, Save One - Knitting to Save Babies Globally
• 11 freely available patterns - From Lions Brand Yarn, some to knit, some to crochet.
  

Calvin's Hats - From One Angel to Another

A message tonight in my email box touched my heart and lead to the creation of a new lens on Squidoo. I had just recently updated the Bereavement Photography lens, so I have been writing about resources for parents coping with the death of a child.

This lens is dedicated to the loving, healing project that is Calvin's Hats, a volunteer project hand-knitting tiny hats for babies who are born to early to survive.

Healing from Loss
Calvin's Hats was created in loving memory of Calvin John by his parents Jenna and John to help bring grieving parents a small amount of healing, comfort, and peace during their time of tremendous loss.

Jenna and John share some of the reasons for creating Calvin's Hats on their website:

We are offering to grieving parents a gift which can bring a small amount of comfort and peace... a hat tiny enough to fit right on their precious child's head and something to hold on to when their child is no longer here.

Our wish is for these hats to bring a small amount of healing.

Annie, their volunteer coordinator, wanted to know if I might "be able to help pass it on to those who might find it helpful. Our goal is simply to bless families and we'll do whatever it takes to get the word out there so we can make that happen."

Thus was born the Calvin's Hats Squidoo lens and this blog post.

I hope both help to get the word out to those knitters and volunteers who may be moved to donate their time, their skills and their resources to help in creating these healing hats.

I also hope posting about it helps parents grieving the loss of their newborn to find out about this healing resource and experience a small amount of comfort knowing the gift given was inspired by parents who had also experience the loss of a newborn.

Comforting Moment: The Immortal Infant Child

Author and poet James Henry Leigh Hunt (1784-1859) wrote these words in one of his prose pieces entitled, "The Deaths of Little Children."

Hunt's words offer some comfort to parents during a time of loss:

There are griefs so gentle in their very nature that it would be worse than false heroism to refuse them a tear.

Of this kind are the deaths of infants...

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

Hunt helps parents who have lost an infant realize that it is alright to shed a tear.

He also helps parents to view the death of an infant as having been 'blessed into an eternal image of youth and innocence.' The child who dies as a newborn or an infant forever becomes the immortal child.

Note on the Image: The photographer writes that this Mother and Child sculpture is place at the entrance to Maternity Section in Grey's Hospital, Pietermaritzburg, South Africa.

Hunt, James Henry Leigh. "Deaths Of Little Children, The." Great Literature Online. 1997-2009.

Image: Adam Ciesielski. Mother and Child Sculpture. Royalty Free Use.

How to Respond to a NICU Parent when the Situation Looks Grim

One situation that everyone hopes no NICU parent needs to face is the death of their NICU baby. Unfortunately each year 1,000's of NICU Parents must face the difficult realization that their NICU baby will not be discharged to home; their because their NICU baby is dying.

Every 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).
When a NICU baby dies it is difficult for the family and also for the NICU Team. Knowing what to say to NICU parents when the situation looks grim is helpful for NICU providers, other family members and friends.

Expressing Wishes and Providing Support in Response to Futility
Dr. Timothy Quill and Colleagues looked at the issues of wishes in response to loss and unrealistic hopes as part of the article "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes.

They reiterated the fact that "physicians who care for patients encounter many powerful and painful emotions, including anger, sadness, fear, grief, loss, hopelessness, and blame." Furthermore they pointed out that situations evoking loss, guilt, or hopelessness are particularly hard for physicians to respond to with empathy.

Quill and colleagues pointed out that "offering wishes instead of apologies is a way to convey empathy for the parent coping with the loss. expressing wishes has the power and potential to humanize the medical encounter in some of its most challenging moments."

Offering wishes is particularly helpful "when the emotion is unrealistic hope, loss, futility, or grief that seems overwhelming or otherwise very difficult to address." These are the situations when physicians should consider joining with the patient and family in the expression of a wish that their circumstances were different.

Some of the phrases suggested (or variants) that may be helpful for physicians, NICU providers, family and friends to use and express wishes include:

• I wish things had turned out better for you.
• I wish the news had been different.
• This has been a terrible loss for you. I wish it hadn't turned out this way.
• This is so hard for you. Just when our hopes were so high, for this to happen. I wish it had been otherwise.
• I will work with you to find a way through this.

What Helped You?

Most NICU parents can remember the awful things that people say to them. These leave indelible etchings in our memories.

I would like to encourage visitors to comment on the things people said or the phrases have helped you during your time of loss.

Note: This is a modified version of the article Tips on Offering Comfort to a Grieving NICU Parent published on the Type-A Mom Site in February 2008.

More:
Quill TE. Arnold RM. Platt F. "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes. Ann Intern Med, Oct 2001; 135: 551 - 555.
Dyer K. Coping Strategies Used by Parents to Deal with their Child's Death. NICU Parent Support Blog.
Dyer K. Factors Important to Parents at the End of their Infant's Life. NICU Parent Support Blog.

From the Heart of a Parent - Bereavement Photography for Grieving NICU Parents

A very special group of volunteer photographers help provide a priceless gift to grieving NICU parents, that of documenting their baby's brief life through something called Bereavement Photography.

In this video clip bereaved parents share their experiences with infant loss and with benefiting from the donated services of the NILMDTS (Now I Lay Me Down to Sleep) remembrance photographers.




About Now I Lay Me Down to Sleep Foundation
The Now I Lay Me Down to Sleep Foundation (NILMDTS) administers a network of almost 7,000 volunteer photographers in the United States and twenty-five countries. At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session.

The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby.

More:
Dyer K. 2008. Now I Lay Me Down to Sleep (Bereavement Photography) on NBC's Today Show. NICU Parent Support Blog.
Dyer K. 2007-8. Bereavement Photography. Squidoo.com

Todd Hochberg - Touching Souls with Bereavement Photography

As parents move through grief they also may struggle with holding on to memories and feelings about this short time with their baby, in the extreme some may wonder if their baby ever was.

Todd Hochberg

Bereavement Photography helps to ease the grief of losing a baby by documenting the presences of that child in their lives.

This video segment aired on the Chicago Tonight program on WTTW, PBS in Chicago showing how Todd Hochberg's stunning and intimate photographs help grieving families heal.



You can find out more about Bereavement Photography at the Squidoo Lens that I developed on the subject or by reading more of the posts on Bereavement Photography included on the NICU Parent Support Site.

• Creating Memories of a Dying Baby For Parents Through Photography
• Now I Lay Me Down to Sleep (Bereavement Photography) on NBC's Today Show

More:
Dyer K. 2007-8. Bereavement Photography. Squidoo.com

Comforting Message: The Preemie Prayer

I found this preemie prayer, searching for prayers that would work for premature babies.

According to the blog entery, Preemie Prayer Revisited on her Preemies then Twins Blog by Sadye Spirit, this prayer was posted above the sinks where NICU Parents, families and staff scrubbed in at the Progressive NICU in the hospital her preemie twins stayed. The poem has brought many a NICU parent to tears.

The Preemie Prayer

Dear God, as you look down upon us,
We know that you might have to squint.
We're located here in the NICU
It's the nursery that we rent.

There are many alarms and sirens,
Connected to condos and flats.
The nurses tape our booties on,
And dress us in funny hats.

We have a lot in common;
All of us were in a hurry.
For many different reasons,
Our storks came a little early.

Some of us don't know why,
We bursted out from our bubbles.
We entered into this world,
Never meaning to cause any troubles.

Mommy and Daddy are worried sick
About the odds that we must beat.
Please God, help them to realize,
That seeing us grow is a treat.

Breath by breath, we'll learn to breathe.
Ounce by ounce we'll tip the scale.
We're like a boat in the ocean,
That knows not sink- only sail.

For we are living miracles,
Mommy and Daddy must simply believe,
That you have angels watching over us;
From the time we arrive, till the time we leave.

Author Unknown

If anyone knows the author of this poem, let me know so I can give him or her proper credits.



Another Preemie Prayer:
You can read another prayer for a Premature Baby at the Our Kids site. A short excerpt is below:

God bless the little child behind the plastic wall
For all he knows is the ringing of the bells and
the blurred images around him.
He has been taken from my womb without warning
and I long to hold him in my arms.

Author Unknown. Premature Baby Prayer. Our Kids.

This prayer is being republished on the anniversary of the day that my youngest was transferred to the higher level NICU.

Images:
Abcdz2000. Praying. Royalty Free Use.
Ensignmedia. Carissa Prayer. Morguefile Free License.

Now I Lay Me Down to Sleep (Bereavement Photography) on NBC's Today Show

The Now I Lay Me Down to Sleep Foundation is there for parents and families to help aid them in their Healing, bring Hope to their future, and Honor to their child.

It is through Remembrance that a family can truly begin to heal.

NILMDTS Foundation

In March 2008, the Today Show featured an episode on Bereavement Photography, photographing the end of a newborn's or child's life.

Learn more about these very special photographers who are able to bring comfort to parents at the end of a child's life by taking permanent reminders of a life.

About Now I Lay Me Down to Sleep Foundation
The Now I Lay Me Down to Sleep Foundation (NILMDTS) administers a network of almost 7,000 volunteer photographers in the United States and twenty-five countries. At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session.

The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby.

You can find out more about Bereavement Photography at the Squidoo Lens that I developed on the subject.

More:
Dyer K. 2007-8. Bereavement Photography. Squidoo.com

Creating Memories of a Dying Baby For Parents Through Photography

The images serve as touchstones for feelings and memories pertaining to deep significant relationships and spiritual connections some of which may flourish in the intimacy of the last days or months of life.

Todd Hochberg

Bereavement Photography
To those unfamiliar with the topic, Bereavement Photography may seem a bit unusual to say the least.

For the parents who have been the recipients of the photographic memories captured by volunteer photographers, bereavement photography is a priceless gift, documenting the often all to brief life of their baby.

The Healing Benefits of Bereavement Photography
There is a strong healing aspect to bereavement photograph. Todd Hochberg of Touching Souls shares how photographs help parents with their grieving process in an article originally published in Share.

Photographs help NICU parents by:

1. Making their baby's life and death real for the parents. Making the life real is a significant issue with brief perinatal lives.
2. Validating the parents feelings, both at the time of their baby's death and up to the present.
3. Being an affirmation of parenthood, a reminder that there was a child that they were a parent to.
4. Providing a tangible record of their time with their baby. The photographs often include cherished close up details of their baby's physical features and evidence of loving familial bonds.
5. Allowing them to connect with the many feelings and memories that may have gotten lost in the torrent of overwhelming grief at the time or in the weeks since.

Todd feels that offering parents an illustrated narrative of "their story" for themselves and the loved ones they choose to share it with, helps to fostering greater social support and connection, which also aids in the grieving process.

Photographers Offering Bereavement Photography Services

Touching Souls - Healing with Bereavement Photography
Photographer Todd Hochberg of Touching Souls 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.

Now I Lay Me Down to Sleep (NILMDTS)
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.

I Say My Prayers

I Say My Prayers involves taking pictures of terminally ill children, individually and/or with their families. The child may be a newborn who will never leave the hospital or it may be a teenager. I will capture the "spirit" and the "life" of the child for the families to hold on to forever. The sitting and the pictures are donated by me to the families.

---

Bereavement Photography helps to ease the parents grief by creating memories that will last a lifetime for these grieving parents. The photographs help them to hold on to memories and document the life of their baby.

Resources:
Dyer K. 2007-8. Bereavement Photography. Squidoo.com
Hochberg T. In Your Eyes; The Caregiver and Bereavement Photography. Share. 2003.

Image: Nic Luc. Old Photo Lens. Royalty Free Use.

10/8 - Comforting Moment - We Never Lose the People We Love

Facing the loss of a baby is one of the most difficult challenges that NICU Parents can face. I have found with the many years of working in the grief, loss and bereavement field, that often times hearing or reading words of wisdom from someone else can help to console during a time of great loss.

One of my favorite quotes to help put a death in perspective comes from Dr. Leo Buscaglia:

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

While words cannot take away the intense pain and sorrow you are feeling, these words that others have found to be helpful during their times of loss may help to ease the pain, by helping you "find comfort in knowing that your lives have been enriched" and that you have been forever imprinted by knowing your baby.

Photo Source: Sanja Gjenero. Heart in Sand. Royalty Free Use.

7/30 - Comforting Message - The Loss of a Child is the Loss of the Future

Today's message is more about why dealing with the loss of a child is so difficult for parents. The comfort perhaps comes from the knowledge of why the death of a child at any age is so challenging.

Children Don't Die First...Do They?
In the natural order of things, children grow into adulthood, marry and have children of their own. Children aren't supposed to die before their parents. Yet sometimes, children do die leaving parents behind to grieve.

Arnold and Gemma in their book, A Child Dies A Portrait of Family Grief, described why parents feel so distraught, depression and despair following the death of a child:

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.

I think for many it is the death of the dreams, the death of hopes and the death of their future that is the most difficult for parents to fact following the loss of a child, at any age.

Quote Source:
Arnold JH, Gemma PB. A Child Dies A Portrait of Family Grief. Philadelphia, PA: The Charles Press Publishers. Second Ed. 1994.

These thoughts are also featured on the Squidoo lens, My NICU Baby has Died.

Photo Source: Phil Landowski. Dust to Dust. Royalty Free Use.

Palliative Care in the NICU - Ethical Dilemmas: A Role for Paralytics & Who is the Patient?

On July 11, 2007 a neonatologist in the U.K. was cleared of misconduct in the case of hastening the deaths of two dying babies. In the final moments before the baby's death, Dr. Munro injected the babies with a paralyzing drug, pancuronium, at 23 times the normal dose to suppress agonal breathing.

This case being described as being "tantamount to euthanasia" is something to think about. It underscores many of the ethical dilemmas surrounding end-of-life or palliative care in the NICU finding the delicate balance between saving a life and merely prolonging a life until it's inevitable death.

Definitions
Palliative care are services that alleviate, lessen, or provide relief of symptoms which interfere with quality of life when curative treatments are no longer an option with a life-threatening illness.

Paralytics and Palliative Care?
My Palliative Care or End-of-Life background is in adult medicine, but the principles of 'doing no harm' and support someone, even a newborn, with comfort until the end of their life should be the same.

I don't remember paralytic agents being routinely used at the end of life with adults. I do remember an attending physician, a critical care doctor briefly sharing his own horrifying experiences under general anesthesia, anesthesia awareness. He described being paralyzed, awake and unable to let anyone know because of the medications he'd been given.

One of the concerns in these cases is that the two dying babies might have been paralyzed, still awake and unable to breathe. As Nurse Judy noted

"We have no way of knowing if those babies were suffering before he gave them the Pavulon, we have no way of knowing if they had any relief from suffering. They may have been totally aware of being unable to breathe."

Not a pleasant thought, to have someone suffocate to death because of medications.

According to the National Cancer Institute Ethical Issues on Last hours of Life, "paralytic agents have no analgesic or sedative effects, and they can mask patient discomfort." In a study done in the late 1990's in the U.K. looking at the practices surrounding withdrawing a dying child from a ventilator, a minority of the respondents continued neuromuscular paralysis after the child had been withdrawn. In a more recent BMJ article from 2002, that looked at the topic of whether agonal respirations are necessary, these physicians proposed that gasping respirations at the end of life should be treated and in rare circumstances "the use of neuromuscular blockade to suppress prolonged episodes of agonal respiration in the well-sedated patient in order to allow a peaceful and comfortable death."

Perhaps this is a difference in the training between the U.S. and the U.K, perhaps it is a difference in the research being done. I think most of all the case underscores the need for still more education in palliative care in the NICU setting. This training would include beneficial and effective ways of managing pain and symptoms in the final hours of life as well as developing standard protocols for NICU physicians to follow to allow for the peaceful and comfortable death.

Who is the Patient - the Baby or the Family?
Another issue in this case, is who was the patient...the baby being treated, or the parents who will be surviving the deaths. In both of these cases reportedly the mothers and fathers of the babies "fully supported the doctor's actions and were grateful to him."

Nurse Geena's comments in response to the parents fully supporting the doctor serve as a reminder to be thinking who is being treated.

Goody for them, but I just can't quite get it out of my mind that the "treatment" was done to comfort the parents and not the baby.

It almost seems that the parents, those who would be living on after the death, had become the primary focus for the doctor, not the dying baby.

Which is more harmful for the parents? Prolonging Death or the Method of Death.
How one copes with a death depends much on how the death was handled at the time. The ultimate outcome of this case will be the effect of these deaths on the surviving parents.

• Will they be more grateful that their baby's suffering ceased and the death was hastened?
• Will they be more harmed because the drugs used hastened their baby's death paralyzed their baby?

We may never know.

Other Bloggers' Thoughts:
Judy, RN. Pancuronium = Pain relief? For whom? Tigers Don't Jump Blog. July 10, 2007.
Geena, RN. On the verge of what society finds acceptable? Code Blog. July 10, 2007.
Kevin, MD. Prolonging life vs prolonging death. Kevin MD. July 10, 2007.

Sources:
BBC News. Doctor 'hastens babies' deaths.' July 5, 2007.
http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6273528.stm
BBC News. Doctor felt babies were suffering. July 9, 2007.
Available at: http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6276900.stm
BBC News. Baby doctor cleared of misconduct. July 11, 2007. Available at:
http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6291224.stm
Reid. M. When prolonging life becomes prolonging death. July 9, 2007. Times Online.
http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article2045207.ece
National Cancer Institute. Last Hours of Life (PDQ®). Health Professional Version. Last updated. June 6, 2007.
Hatherill M, Tibby SM, Williams C. March MJ, Murcoch IA. Withdrawal of ventilation from the dying child. Clinical Intensive Care. 1997. 8;5:222-227.
Perkin RM, Resnki DB. The agony of agonal respirations: is the last gasp necessary?
Journal of Medical Ethics. 2002;28:164-169. http://jme.bmj.com/cgi/content/abstract/28/3/164

Additional information:
Dyer KA. My NICU Baby is Dying: Now What? Available at:
http://www.squidoo.com/marchofdimes/mynicubabyisdying
Dyer KA. My NICU Baby had Died: Now What? Available at: http://www.squidoo.com/mynicubabydied/
Carter BS. Bhatia J. Comfort/palliative care guidelines for neonatal practice: development and implementation in an academic medical center. Journal of Perinatology. 2001. Jul-Aug;21(5):279-83.
Full article available at: http://www.nature.com/jp/journal/v21/n5/abs/7210582a.html
Carter BS. Ethical Issues in Neonatal Care. eMedicine. Available at: http://www.emedicine.com/PED/topic2767.htm

What can I *do* when a NICU baby dies?

The death of the fourth sextuplet prompted the Blog entry on "What can I *say* when a NICU baby dies?" This entry included several helpful suggestions for what you can say.

This blog is a follow up to the "What can I *say*" entry with helpful suggestions for "What you can *do*."

What can I *do* when a NICU baby dies?
Two very helpful things you can *do* to support a NICU parent who has lost a baby are to listen and to simply be.

Listening Helps
According to research, doctors on the average interrupt 20 seconds after their patient begins to speak. With the hurried pace everyone seems to be keeping these days, I would think that people often interrupt each other at close to a similar rate. For someone trying to tell their NICU story of loss, listening can be a true gift.

One of the most important things you can *do* for a grieving NICU parent is to give him or her your presence. The ability to listen can be a great source of comfort. Listening communicates respect, caring and empathy. Sometimes all a parent may needs is someone who will truly and emphatically listen to the story of grief. Really listening involves being present for the person, not interrupting and staying connected and focused on what he or she is saying.

Sitting with a NICU parent, listening to the NICU story, being a witness to the pain and sorrow can help provide invaluable support during times of duress. Spending a few quiet moments in silent contemplation, holding a hand is another effective way to convey your sympathy and support.

Advice on How to Listen
There are several different versions of this inspirational poem on listening. I have pulled one that I thought had the best message and referenced the others under Resources.

There are also several short articles in the references on characteristics of good listening and listening tips from a communication studies course, if you need to practice your attentive listener skills.

Listen

When I ask you to listen to me, and you start giving me advice,
You have not done what I asked.

When I ask that you listen to me, and you begin to tell me why I shouldn't feel that way,
You are trampling on my feelings.

When I ask you to listen to me, and you feel you have to do something to solve my problems,
You have failed me, strange as that may seem.

Listen.
All that I ask is that you listen,
Not talk or do - just hear me.

When you do something for me
That I need to do for myself,
You contribute to my fear and feelings of inadequacy.

But when you accept as a simple fact
That I do feel what I feel, no matter how irrational,
Then I can quit trying to convince you
And go about the business
Of understanding what's behind my feelings.

So, please listen and just hear me
And, if you want to talk,
Wait a minute for your turn - and I'll listen to you.

Source: Author Unknown. Listen. Westhartford Counseling Center.
http://westhartfordcounselingcenter.com/listen.htm

---

Just Be
Another helpful resource to share with a friend who is hurting, is your presence and your full attention.

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

Remember that two of the greatest gifts you can give to a NICU parent are the gift of listening and the gift of your presence.

Do not underestimate the healing presence yourself and of really listening to someone who is going through a difficult experience.

Other Resources:
Chadwick. N. Please Listen. http://www.1stholistic.com/prayer/hol_prayer_please-listen.htm
Nickerson LS. 2007. Characteristics of Good Listening. Listening and Understanding: Communication Studies. University of Idaho. http://www.webpages.uidaho.edu/~lnicker/page28.html
Nickerson LS. 2007. Listening Tips. Listening and Understanding. Communication Studies. University of Idaho. http://www.webpages.uidaho.edu/~lnicker/page28.html
Author Unknown. Please Listen to Me. Communication Studies. University of Idaho.
http://www.webpages.uidaho.edu/~lnicker/page29.html

Sources:
CBS Broadcasting Inc. June 25, 2007. 4th Sextuplet Born To Minn. Couple Dies. Available at: http://wcco.com/topstories/local_story_176160040.html
Dyer KA. What can I *say* when a NICU baby dies?. June 2007. Available at: http://nicuparentsupport.blogspot.com/2007/06/what-can-i-say-when-nicu-baby-dies.html
Dyer KA. Comforting Moment - It's Only Words... June 2007. Available at:
http://nicuparentsupport.blogspot.com/2007/06/611-comforting-moment-its-only-words.html
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. June/July 2005; 24: 27-40.
Quill TE. Arnold RM. Platt F. "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes. Ann Intern Med, Oct 2001; 135: 551-5. Available at: http://www.annals.org/cgi/content/full/135/7/551

What can I *say* when a NICU baby dies?

More sad news came on Monday June 25 with the death of the 4th of the Morrison Sextuplets in Minnesota. Cadence Alana, died Saturday morning, she joins her brothers Tryg Brenton, Bennet Ryan and Lincoln Sean who all died earlier this month.

Our thoughts and prayers go out to the Morrison family who have not only lost one NICU baby, but now have to endure the deaths of four of their children. During a time of loss, such as the death of a newborn, it can be difficult to know what to say.

As mentioned earlier in this month, words can provide a source of solace, hope, comfort and reassurance--emotions much needed during the grieving process, but they need to be words that can provide comfort.

What can I say when a NICU baby dies?
Some of my personal favorites:

• I am sorry for your loss.
• I wish you didn't have to experience this.
• I am sorry that this happened to you.
  
• I am thinking of you during this difficult time. (usually written)
  

These phrases are some of the ones included in the blog on words:

• I'm so sorry.
• I wish you comfort.
• I hope things will be good.
  
• I wish this hadn't happened to you.

The following are suggestions that can be to use when talking with a grieving person or parent from a paper that I wrote in the Neonatal Network Journal:

• I'm sad for you.
• I don't know why it happened.
• What can I do for you?
• How are you doing/coping with all of this?
• How can I help?

This last collection of words to use comes from an article written for physicians about expressing wishes in response to loss, futility and unrealistic hopes. Some of the phrases suggested (or variants) included:

• I wish things had turned out better for you.
• I wish the news had been different.
• This has been a terrible loss for you. I wish it hadn't turned out this way.
• This is so hard for you. Just when our hopes were so high, for this to happen. I wish it had been otherwise.
• I will work with you to find a way through this.

Say Something to Show You're Support
People often fear so much saying the wrong thing that they often don't say anything at all. A grieving parent would like to know that family and friends are there to support them during this difficult time of loss.

Pick one of these various suggestions, or modify one so it feels more like something you would say, then let the person know verbally or in writing that you are there for them.

Sources:
CBS Broadcasting Inc. June 25, 2007. 4th Sextuplet Born To Minn. Couple Dies. Available at: http://wcco.com/topstories/local_story_176160040.html
Dyer KA. Comforting Moment - It's Only Words... June 2007. Available at:
http://nicuparentsupport.blogspot.com/2007/06/611-comforting-moment-its-only-words.html
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. June/July 2005; 24: 27-40. Abstract at: http://www.neonatalnetwork.com/nn3/Abstracts/nnja05.htm
Quill TE. Arnold RM. Platt F. "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes. Ann Intern Med, Oct 2001; 135: 551 - 555. Available at: http://www.annals.org/cgi/content/full/135/7/551

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

They had a camera and they had pictures...
they had already taken his hand and feet prints...

Looking back we have not only our memories,
but some of the things...
those things are very important.

Parents of a NICU Baby Who Died

Coping with the end of a NICU infant's life is a very difficult situation for most parents; each family learns how to cope in their own way. The end-of-life experience with their infant can be made easier with support from family, friends and the hospital care providers.

In a study published in April 2007 in the Journal of Perinatology researchers surveyed parents and identify factors that were important to them in caring for their infant at the end of life. These were presented in a prior blog on "Factors Important to Parents at the End of their Infant's Life."

This study also identified various coping strategies that helped parents deal with their child's death. The strategies identified included:

• Family Support
• Keeping the Child's Memory Alive
• Spirituality & Faith
• Altruism - wanting to 'give back' to the hospital
  
• Refocusing on Life - often on the other children
  
• Validation of their Decision
• Bereavement Support Groups

Additional Recommendations
The Parents who were interviewed were asked what would have made their end-of-life experience better with their infant. Their recommendations included:

• Parents should always ask questions and stay informed.
• Parents need to be vocal and stand by their decisions.
• Be sure to keep siblings included.
• Participate in the child's care as much as possible.
  

How a person gets through a difficult experience, such as the death of a child, depends a lot on what happened and how the experience was handled at the time by the hospital staff and by family.

Parents who utilize these coping strategies that were identified, although they live through an excruciatingly difficult experience, are generally able to cope with the death of a child.

Researchers' Conclusions:
Results of this study suggest that most parents are able to effectively cope with the death of their infant. These results are in contrast to other studies that have shown a higher rater of depression and PTSD in parents who had a child die.

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

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

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