Wednesday, September 30, 2009

Coming This November...Prematurity Awareness Month for the March of Dimes

Every year, 20 million babies are born too soon, too small and very sick. Half a million premature babies are born each year in the United States.

November is Prematurity Awareness Month for the March of Dimes. During November, the March of Dimes works on raising awareness about premature births in the hopes of saving more babies from being born prematurely.

Hear about the work that the March of Dimes is doing to prevent birth defects, premature birth, and infant mortality from NICU Physician (Neonatologist) and former NICU Parent, Dr. Jalie-Marti:

More on Prematurity Awareness Month
The March of Dimes offers information on ways to learn, do and give to show your support for the March of Dimes' Prematurity Awareness Month.

Things that you can do:
  • Raise a voice and join the MOD National Advocacy Network
  • Follow the March of Dimes on
  • Post a Badge or a Banner like the one below on your Blog to show support.
  • Click on the image below for more information from the March of Dimes.

More Articles on the March of Dimes

Dyer KA. 2009. NICU Family Support from the March of Dimes. NICU Parent Support Blog.
Dyer KA. 2009. March of Dimes Supporting NICU Families with NICU Family Support. Type-A Mom.

Sunday, September 20, 2009

Ways to Help NICU Parents After the NICU

One of the biggest problems for NICU parents is starting to processes the experience and cope with their NICU experience after they have left the NICU. Dr. Holditch-Davis, professor at Duke University School of Nursing noted in a recent NY Times article,
It may be several months later when they’re ready to process what they experienced, but at that point, family and friends don’t want to talk about it anymore.
Once parents are home from the NICU and the daily activities become more routine, this is the time when many parents finally start processing their NICU experience. Researchers are starting to recognize parents with depression, anxiety and PTSD after the NICU, as noted in the blog post, NICU Admission Puts Parents at Risk for PTSD.

Helping NICU Parents After the NICU
There are several ways to help NICU parents after the NICU to reduce their risks of developing problems after a NICU admission.
  • Education: Parents
  • Education: Physicians and Health Care Providers
  • Identifying Symptoms
  • Support for Parents after the NICU
Education: Parents
Part of my hope for the NICU Parent Support Site is that by writing about different topics and different issues facing NICU parents, they will understand more about the normal response NICU parents can face when dealing with the many losses that result from a NICU admission.

Education: Physicians and Health Care Providers As noted in the blog post on After the NICU: Aftercare for NICU Parents, "There are many different physicians and other health care providers who might see NICU babies and NICU Parents in follow up."

The key here is educating all of the different health care providers who see NICU parents in follow up to be able to identify those parents who may be at risk by checking to see that the parents are doing well after they are home from the NICU.

Identifying Symptoms
Researcher and former NICU Parent Dr. Michael Hynan designed a helpful screening tool for determining NICU parents at risk. The Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) can be easily administered. This tool can help determine if the NICU Parents might need some additional support once the family is discharged from the hospital.

If I was able to do so, I would see that all NICU parents take a PPQ (or similar) screening questionnaire to make sure they are doing well once home from the NICU.

Support for Parents after the NICU - Hospitals
Support for NICU parents can vary greatly depending on the hospital and depending on the nature of their newborn's health. Some hospitals offer good programs after the NICU with support groups, education and follow up. Others (like our hospitals) may be focusing on just getting parents through the initial ordeal.

Often the follow up ball is dropped by the hospitals, because parents are no longer in the NICU and their regular health care providers don't know, or don't think to make sure they are still doing o.k. several weeks or months after the NICU.

Support for Parents after the NICU - March of DimesSome hospitals have a NICU Family Support Specialist from the March of Dimes to help offer NICU parents support and help in navigating the confusing NICU. Their NICU Family Support website offers information, resources and online communities 24/7 online.
Support for Parents after the NICU - OnlineIn addition to the March of Dimes, Share Your Story, there are other online resources available for NICU Parents. These are the main ones that I've found below.
If you know of others, please add them in the comments section and I can add them to our list of recommended forums.


Dyer KA. 2009. After the NICU: Aftercare for NICU Parents. NICU Parent Support Blog.
Dyer KA. 2009. NICU Admission Puts Parents at Risk for PTSD. NICU Parent Support Blog.
Tarkan L. 2009. For Parents on NICU, Trauma May Last. New York Times.
Definition of aftercare. 2007. In Merriam-Webster Online Dictionary.
Dyer KA. 2007. Reflections on NICU Aftercare: Who should following up on NICU parents? NICU Parent Support Blog.
Dyer K. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. 24: 27-40.
Hynan MT. Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ).

Image: Modified Microsoft Clipart.

The Body Remembers What the Mind Does Not: A NICU Anniversary

I have always known that grief is a total response to a loss. Grief impacts the mind, body and spirit. What I was surprised to discover several years ago myself that the body remembers grief even when the mind may not.

Radiating Back Pain
Two years ago I experienced an episode of excruciating back pain. I'd been pushing myself in a physical education class (stair climbing) and a couple of days later turned the wrong way in bed and experienced pain radiating down my back into my leg. The pain felt like sciatic pain.

I made it in to teach my class and was able to stand through the lecture then came home to crash out on the couch and fell asleep for a nap—BIG mistake. I really had problems getting back up off of the couch and more problems straightening out to move around. The pain was bad enough to call my husband home from work to help watch the girls.

I slept a very restless night, still uncomfortable, still in pain. Even though I was uncomfortable, I decided it wasn't worth a trip to the Emergency Room and decited to let everyone else sleep through the night rather than waking them up. I kept hoping things would be better in the morning.

With a bit of home treatments and over the counter medications, in a couple of days my back pain started improving. Once the pain started subsiding, I was able to take a look at the calendar and made a rather startling discovery...

My Body Remembers Our NICU Time
I was amazed when looked at the date for the night I had been unable to sleep because of the pain and elected to let everyone else sleep through the night. The date of my excruciating pain was 5 years to the night that my youngest had been intubated while in the NICU for breathing difficulties.

When my daughter was intubated, I was still in the hospital recovering from a C-section, so I heard the news late in the evening. I elected to let my husband and mother sleep through the night, figuring that they couldn't do anything more about her being intubated, trusting that things would work out, and knowing that I could always call if things got worse. I kept hoping things would be better in the morning.

It was probably one of the most helpless feelings that I experienced as a mother and as a physician. My daughter's care and safety was in the hands of others. There was nothing else that I could do.

I had also felt helpless days before when she had been moved into the NICU hours after birth because I was unable to move initially of the spinal anesthesia (one of my greatest fears about having a C-section).

Even though I was unaware of the date five years later, my body remembered this other time when I had been in emotional and physical pain and kept hoping things would be better in the morning.

Body Healing from Loss
This quote by Mel Colgrove describes how the body heals from loss.

When an emotional injury takes place, the body begins a process as natural as the healing of a physical wound. Let the process happen.
Trust that nature will do the healing.

Mel Colgrove

It is interesting to note that five years later, my body was still holding on to the traumatic memory of my daughter's time in the NICU even though my mind was not.

Was the Back Pain an Anniversary Response?

The National Center for Post Traumatic Stress Disorder defines an Anniversary Reaction as "an increase in distress around the anniversary of a traumatic event is commonly known as an 'anniversary reaction.' This reaction can range from feeling mildly upset for a day or two to a more extreme reaction in which an individual experiences significant psychiatric or medical symptoms."

What is interesting is that "on the anniversary of traumatic events, some people may find that they experience an increase in distressing memories of the event. These memories may be triggered by reminders, but memories may also seem to come from out of the blue while at work, home, or doing recreational activities." I wasn't having a distressing memory in my mind, I was experiencing the distressing memory in my body.

It is likely based on these definitions that the back pain episode I experienced five years later to the date was an anniversary response, that my body remembered, even though my mind did not.

The Body Remembers
Babette Rothschild, MSW, LCSW, is author of The Body Remembers: The Psychophysiology of Trauma and Trauma Treatment. In her book she looks at current thought that people who have been traumatized hold an implicit memory of traumatic events in their brains and bodies.

Ms Rothschilds has developed a method for treating those who have lived through a traumatic event. She believes that traumatic events exact a toll on the body as well as the mind. Her book and her practice which focuses on Somatic (Body) Therapy.

According to her publisher, this book illuminates the psychophysiology of trauma, "shining a bright light on the impact of trauma on the body and the phenomenon of somatic memory."

The Memory Lives On
Thankfully the anniversary of my daughter's NICU adventure for the past two years has gone by uneventfully, but the memory lives on within the posts of this blog.

Dyer KA. 2008. What is an Anniversary Response or Anniversary Reaction? Grief, Loss & Transitions Blog.
Dyer KA. 2007. Anniversary Reaction - When Remembering Isn't Always a Happy Occasion.
Hamblen J, Friedman M, Schnurr P. Anniversary Reactions. National Center for Post Traumatic Stress Disorder.

H.A.N.D. 2008. Understanding the Grief Process: The Grief Process. Helping After Neonatal Death.

Image: Modified Microsoft Clipart.

Thursday, September 17, 2009

Lullaby Link - A Resource for Lullabies

Lullaby Link is a website developed by husband and wife, Tim and Amy Wilson. Lullaby Link provides lullabies, lullaby lyrics and other resources to help support parents in bringing music into the home.

Website Resources
At Lullaby Link you will find lyrics, melodies and "how to" videos, easy songs, words for the classic lullabies, a downloadable Lyrics Ebook, ideas for non-singers and a "Listening Center."

Music Resource
In addition to the resources at Lullaby Link, Amy Robbins-Wilson composed lullabies and prayers for her son. These were transformed into "the CD I wish I'd had during my first year of motherhood," The Divine Hours of Motherhood: Lullabies and Prayers for Mothers and Babies.

Here collection of comforting prayers and soothing lullabies includes songs such as: Angels Gather Here, Angels Watch Over My Baby, Bless this Child, Vespers, A Nighttime Blessing, Vigils and Child of Moonlight.

The Divine Hours of Motherhood can be ordered as a CD or downloaded as an MP3 Album.

More Suggestions for Using Lullabies in the NICU

Amy's son Clayton was in the NICU. She shares her insights on using sound and song on their page on NICU Music Ideas:

No matter how your baby begins his earthly life, you can use sound and music to bond with them. Even if your baby is too small to be held, there is healing for them in your voice and they will be thrilled every time they hear you.

Amy offers some great ways to use music with premature babies:

  1. Hum. This is especially effective if you and your baby are skin to skin and heart to heart on your chest.
  2. Sing them a lullaby.
  3. Sing their name to them softly over and over.
For more on using Music in the NICU, follow the links below.

More on Using Music in the NICU

St. Elizabeth's Medical Center. 2009. NICU Music Therapy. Neonatal Intensive Care Music Therapy Services. Pediatrics.
Wilson A. 2009. NICU Music Ideas. Lullaby Link.
Dyer KA. 2009. Coping with the NICU: Got to get to you. Got to see this through. Wires by Athlete. NICU Parent Support Blog.

Dyer KA. 2007. Music Used for NICU Newborns in Studies & Other Selections. NICU Parent Support Blog.
Dyer KA. 2007. Music’s Ability to Soothe and Nurture the NICU Baby. NICU Parent Support Blog.
Engel J. 2009. NICU Music Therapy: Music Therapy in the Neonatal Intensive Care Unit. Engel Music Therapy Services.
Engel J. 2009. NICU MT Services: Music Therapy with Infants in the Neonatal Intensive Care Unit. Engel Music Therapy Services.
Pediatric Music Therapy. Music Therapy in Neonatal Intensive Care. Florida Hospital for Children.

Tuesday, September 15, 2009

Coping with the NICU with Music: Wires by Athlete

This amazing and hauntingly accurate song about hope and coping with the NICU was written by Joel Pott, the lead singer of the British group Athlete.
You got wires, going in.
You got wires, coming out of your skin.
You got tears, making tracks.
I got tears, that are scared of the facts.
The song was written about his second child Myla, who as a newborn was rushed to Intensive Care after being born prematurely.
Got to get to you.
Got to see this through.
This version shown here is from Live on Jools Holland in 2005.

More about Wires
According to Joel Pott's Wikipedia page, his daughter Myla, born prematurely is now healthy. In 2006, Athlete won the Ivor Novello Award for "Best Contemporary Song" for "Wires."

I found out about this song through a thread on the Preemie Support Group at from the thread on "Songs that remind you of the NICU/PICU."

Official "Wires" Video
You can view the official "Wires" Video in several places on YouTube, here and here. In the official version you get a sense of feeling the "Wires" and a better feeling of the personal anguish felt by NICU parents. This version has had the "Embedding disabled by request."

You can download the song "Wires"(Radio Edit) as an MP3 song.

Sunday, September 13, 2009

After the NICU: Aftercare for NICU Parents

The day has finally arrive and you get the news you have been waiting for days, weeks or months. You finally get to take your NICU baby home.

This moment is met with great joy combined with a bit of fear and dread, since suddenly now you will be on your own with your NICU baby at home.

After the NICU
Follow up or Aftercare is monitoring the health and well being of the NICU family after the NICU admission. According to the Merriam-Webster Online Dictionary, Aftercare is
...the care, treatment, help, or supervision given to persons discharged from an institution (as a hospital)
What I didn't realize at the time and did not discover until I was researching for the articles for Neonatal Nework is that NICU Parents are at an increased risk for experiencing a variety of disorders and responses...after the NICU.

NICU Parents are at risk for experiencing depression, post partum depression, post traumatic stress disorder (PTSD), anxiety disorders and a prolonged grief response.

Concerns about Follow Up
Since finding out the NICU parents are at risk for developing several different conditions and reflecting on our own NICU follow up, I have been very concerned about the aftercare (or lack of aftercare) that NICU parents receive following a NICU admission. As noted in the recent article on PTSD and the NICU by New York Times author, Laurie Tarken:
Experts say parents who are at risk for post-traumatic stress should be identified ahead of time and given help to prepare them for dealing with the initial trauma. But many hospitals are focused on saving the infants, not the emotional crises of the parents.
Research has been done demonstrating that organized family support program could aid in maintaining family stability during the newborn’s intensive care hospitalization. Other studies have shown that new NICU mothers paired with former NICU parents had less anxiety and depression, and more social support, than mothers who did not have a NICU parent 'buddy.'

So what can be done about providing aftercare for NICU parents?

Aftercare for NICU Parents
From my perspective as a primary care physician and former NICU parent aftercare for NICU parents should be provided by any professional seeing a parent or a baby in follow up from the NICU hospitalization.

There are many different physicians and other health care providers who might see NICU babies and NICU Parents in follow up. The health care providers include pediatricians, obstetricians and gynecologists, urgent care physicians, emergency room physicians, internists (adult medicine), nurse practitioners, nurse educators, physician assistants, social workers, mental health counselors and clergy.

The key is getting the word out to the right groups. As I wrote in the NICU article that was published:
NICU physicians and nurses may be aware of the research supporting preventive or postnatal intervention, but they generally are not the ones following up with the family. Conversely, the obstetricians/gynecologists, pediatricians, family practitioners and nurse practitioners who are providing the follow-up appointments may not be aware of these NICU studies.
Those who may see NICU parents in follow up, the the obstetricians/gynecologists, pediatricians, internists, family practitioners and nurse practitioners need to know about the risks that NICU parents are at for different.

Articles like the recent one in the New York Times will go a long way in helping get the word out to main stream, so NICU parents and friends of NICU parents will be more likely to know about the risks that can occur, after the NICU.

I'll be looking at other ways to help NICU parents in a later post.

Dyer KA. 2009. When to Seek More Help: How NICU Parents Can Recognize PTSD Symptoms. NICU Parent Support Blog.
Dyer KA. 2009. NICU Admission Puts Parents at Risk for PTSD. NICU Parent Support Blog.
Tarkan L. 2009. For Parents on NICU, Trauma May Last. New York Times.
Definition of aftercare. 2007. In Merriam-Webster Online Dictionary.
Dyer KA. 2007. Reflections on NICU Aftercare: Who should following up on NICU parents? NICU Parent Support Blog.
Dyer K. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. 24: 27-40.
Hynan MT. 2001. Assisting the trembling hands that hold the tiny hands: Helping high-risk parents improve neonatal outcomes. Paper presented at the annual meeting of the National Perinatal Association, University of Wisconsin Milwaukee. December 2001.
Hynan MT.
Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ).

Image: Home-Sweet-Home Glass Plaque. Available on Amazon.

Saturday, September 12, 2009

Encouraging Message: Live Each Moment Anew

Part of the reason for including encouraging messages as part of the NICU Parent Support Blog is because I have long been a believer in the power of words to help during difficult times. Encouraging words can be very helpful during challenging times. Words can be helpful in helping one cope with life's difficulties, because the words help us to shift and focus on something else that is positive.

British philosopher, Paul Brunton, who dedicating his life to an inward and spiritual quest offers these encouraging words about living each moment anew.

Every morning
is like a new reincarnation
into this world.

Let us take it then
for what it is
and live each moment anew.

Paul Brunton
Brunton's words of encouragement and hope can be very helpful for NICU parents struggling to make it through each day in the NICU, trying to put behind the bad days and focus on the good ones. This quote about remembering to live each moment, each new dawn anew can be helpful in getting through the challenging days and waking up to face the new day with a new start.

About is a network for grateful living. They are an international nonprofit organization provides resources for living in the gentle power of gratefulness, which restores courage, reconciles relationships, and heals our Earth.

If you want a dose of gratefulness in your life, I would encourage you to sign up for their Word for the Day that comes daily via email. I have received their messages of encouragement and hope for years.

Image: Andris Kovács. Lake Sunrise. Royalty Free Use.

Thursday, September 10, 2009

When to Seek More Help: How NICU Parents Can Recognize PTSD Symptoms

NICU Admissions are a stressful time and even a terrifying experience for all of those involved. Trying to figure out how to manage in a the strange NICU world can be overwhelming for many NICU Parents.

Many parents are able to cope with the additional NICU stressors with a little help, by doing things like becoming an empowered NICU Parent, finding healthy strategies for dealing with NICU stresses and discovering ways of interacting with their NICU newborn.

Some parents continue to find the NICU experience to be an overwhelming one. As noted by former NICU Parent, Kim Roscoe:
The NICU was very much like a war zone, with the alarms, the noises, and death and sickness. You don’t know who’s going to die and who will go home healthy.
NICU experiences can even continue to haunt them once they have returned home with recurring flashbacks and a hypervigilant state. Researchers are slowing realizing (and documenting) that having a child in the NICU puts parents at risk for developing PTSD or Post Traumatic Stress Disorder.

In a recent article by Laurie Tarkan for the New York Times, she summarizes three different types of traumas that NICU parents experience with put them at risk for developing Post Traumatic Stress Syndrome (PTSD):

  1. Having an early, often unexpected delivery.
  2. Watching your own infant and witnessing other infants enduring traumatic medical procedures and life-threatening events.
  3. Receiving serial bad news.
The NICU adventure is more like the war zone and unlike other single traumas (like an accident), because the bad news can keep coming again and again, re-traumatizing parents every time there is a setback in their NICU baby's health.

Recognizing PTSD (Post Traumatic Stress Disorder)
The National Center for PTSD reports that there are four types of symptoms for PTSD: reliving the event, avoidance, numbing, and feeling keyed up.
  1. Reliving the event (also called re-experiencing symptoms) - Bad memories of the traumatic event can come back at any time resulting in feeling the same fear and horror you did when the event took place. Nightmares and flashbacks may also occur. A flashback is a feeling like you are living through the event again.
  2. Avoiding situations that remind you of the event - Avoiding situations or people that trigger memories of the traumatic event, even avoiding talking or thinking about the event.
  3. Feeling numb - Find it hard to express your feelings.
  4. Feeling keyed up (also called hyperarousal) - Feeling jittery, or always alert and on the lookout for danger.
For even more information on PTSD symptoms check the National Center for PTSD Article or the one from the Mayo Clinic.

When to Advise Seeking More Help

Any parent feeling or showing any of the following:
  • Prolonged agitation or anxiety
  • Depression or extreme hopelessness
  • Impaired daily activities or job function
  • Suicidal thoughts or ideas
  • Extreme physiologic or psychological reactions
  • Substantial guilt
  • Substance abuse either alcohol or drug use
  • Psychotic states
  • Uncontrolled rage
  • Prolonged, inhibited or absent grieving
Any NICU parent experiencing signs of PTSD or the other concerning signs above for more than a month should seek out their health care provider for further evaluation to help get your life back under control.

Screening for PTSD
A helpful screening tool for determining NICU parents at risk is the Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) designed by researcher and former NICU Parent Dr. Michael Hynan. This tool can help determine if the NICU Parents might need some additional support once the family is discharged from the hospital.


Dyer KA. 2009. NICU Admission Puts Parents at Risk for PTSD. NICU Parent Support Blog.
National Center for PTSD. What is PTSD? National Center for PTSD.
Mayo Clinic Staff. 2009. Post-traumatic stress disorder (PTSD) Symptoms. Mayo Clinic.

Tarkan L. 2009. For Parents on NICU, Trauma May Last. New York Times.

Chris Sternal-Johnson. The NICU Pod. Creative Commons License.
Sanja Gjenero. Helping Hands. Royalty Free Use.

Sunday, September 6, 2009

Comforting Message: A Prayer from the NICU

Tara, a former NICU parent contacted me after reading the NICU Parent Support Blog and asked if I would be interested in sharing the prayer poem that she wrote about the N.I.C.U.

She wrote the poem for a friend when her friend's child was in the NICU several years ago. She had already lived through her own experience of having twins in the NICU.

A Prayer from the N.I.C.U.
by Tara Roper
Dear God,
I have a request to make.
Just a moment of your time it will take.
You see, my parents, are heartbroken and sad,
and they have prayed to you with all they had.

Could you just hug them and remind them you care,
as they are wishing I was at home, not here.
This time is confusing, unlike how they pictured it would be,
But I want them to know that you take care of me.

Although I am sleeping in this little bed,
and I am often too tired to raise my little head,
please remind them that I know they did their very best.
And that at night I am protected as I sleep upon your chest.

They think I am so lonely when they are away,
and if I could tell them, I would say

I know this is hard, and God understands,
But just know He has never let go of my hand.
He is always with me, like He is with you,
and all this has a purpose too.

And God, while I am in this temporary N.I.C.U. home,
I just want them to know I have never been alone.
Source: Roper T. A Prayer for the N.I.C.U. Reprinted with Permission.

About the Author
Tara Roper is a 34 year old mom of three in the Atlanta area. Her daughter Caroline is five years old , and her twins, Maggie and Jacob are almost three years old. She and her husband John have lived in the Atlanta area and Boston area in the last ten years. Tara has been the editor of local parenting newsletters and writes on Tara is the Assistant Coordinator for The Women's League Inc. for Northstar Church. Tara is currently taking time off from being a special education teacher to be at home with her children.

You can contact her through Faith Writers.

More Prayers

Dyer KA. 2008. The Preemie Prayer. NICU Parent Support Blog.
Dyer KA. 2007. Creatively Coping: Write a Prayer Poem. NICU Parent Support Blog.
Dyer KA. 2007. Creatively Coping: Preemie Prayer Pockets. NICU Parent Support Blog.
Dyer KA. 2007. Preemie Prayer for Sylas Christopher, the Remaining Morrison Sextuplet & Siblings. NICU Parent Support Blog.

Image: Aparecida B. Souza.
Little Angel. Royalty Free Use.