NICU Admission Puts Parents at Risk for PTSD

Former NICU Parent and NICU Researcher Dr. Michael Hynan has been one of the researchers looking at the possibility PTSD (Post Traumatic Stress Disorder) in parents after the NICU. I wondered about the possibility of NICU admissions putting parents at risk after our NICU adventure in 2002, having studied PTSD in other settings.

In the article "Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response" published in Neonatal Network in 2005, I expressed some of my thoughts based on the research up to that time:

Hospitalization of a child can be a traumatic stressor for the family. NICU parents are at increased risk of having impaired relationships with the infant along with developing depression and anxiety-related disorders, including post traumatic stress disorder. The ability of parents to cope with the NICU crisis and its aftermath can directly affect the infant’s development.

Parental stress in the NICU has a short-term impact on the establishment of the parent-child relationship, with potential repercussions on the child’s long-term development. Many articles document the psychological, medical, and economic benefits of considering the emotional needs of parents with children in the NICU or PICU.

(See the Neonatal Article for full citations)

Thankfully the research seems to be supporting what parents have known all along about the stressful and traumatic nature of having a newborn in the NICU.

New Findings Acute Stress, PTSD and the NICU
An article published in Psychosomatics in Spring 2009 looked at "The relationship between acute stress disorder and post traumatic stress disorder in the neonatal intensive care unit." The research conducted by physicians and researcher at Stanford University School of Medicine investigated the number of parents experiencing PTSD four months after the birth of their premature or sick infant. They also looked at the relationship between PTSD and acute stress disorder experienced by parents immediately after birth.

At the end of their study they concluded:

The relatively high levels of psychological distress experienced by parents coupled with the potential negative outcomes on the parent and infant suggest that it is important to try to prepare parents for the expected psychological reactions that may occur in the event of a NICU hospitalization and also to support parents during the transition to home care.

Another recent study published in Journal of Developmental and Behavioral Pediatrics was conducted at the Children's Hospital in Los Angeles (University of Southern California). Researchers in this study investigated acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit. They discovered that "having a newborn in the NICU had a significant association with the number of mothers' acute posttraumatic stress symptoms." These PTSD symptoms experienced by the NICU mothers were not fully explained by their symptoms of depression or prior lifetime history of traumatic events.

Ways to Help NICU Parents
Key findings of ways to help parents from the Stanford Study are:

• Preparing NICU parents of what they might experience.
• Supporting NICU parents in the transition home.

The Children's Hospital Los Angeles concluded that addressing acute post traumatic stress symptoms (or education) may enhance interventions to help families of NICU infants, in particular urban families.

So two of the ways to help prevent NICU parents from getting PTSD appear to be through education and support. NICU parents need to be educated about what to expect while in the NICU and what to expect once they are home. In addition NICU parents need to be supported both in the NICU and once they are home.

Sources:
Dyer KA. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response. Neonatal Network May/June 24(4):35-46.

Shaw RJ, Bernard RS, Deblois T, Ikuta LM, Ginzburg K, Koopman C. 2009. The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics. Mar-Apr;50(2):131-7.

Vanderbilt D, Bushley T, Young R, Frank DA. 2009. Acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit: a preliminary study. J Dev Behav Pediatr. Feb;30(1):50-6.

Holditch-Davis D, Bartlett TR, Blickman AL, Miles MS. 2003. Posttraumatic stress symptoms in mothers of premature infants. J Obstet Gynecol Neonatal Nurs. Mar-Apr;32(2):161-71.

Image Source: Modified Microsoft Image.

NICU Parents Seem to Be Waiting for the Other Shoe to Drop

One of the things that stuck with both my husband and me after our NICU experience was the feeling that something else was going to happen, or to use the old expression, we kept "waiting for the other shoe to drop" or waiting for something else to develop, something else to show up that was initially missed.

For me getting back to normal was gradual. When my NICU survivor was 2-years-old I started working on an article on "Identifying, Understanding, and Working with Grieving Parents in the NICU" that was published soon after she turned three. Writing about the experience was a way for me to put it into some perspective.

By the time she was in preschool we were able to see that she was meeting her milestones and not suffering from any undiagnosed learning disability.

We had a couple of scares along the way, but with time eventually began to realize that she would not "break like a China doll" and that the other shoe was not going to drop.

Others Feel the Fear and Anxiety as Well
Part of what helped me in getting over the feeling that something else was going to happen was discovering others also felt the same way. Over the years I have discovered that it is common for NICU Parents to continue to feel anxious and fearful that something may happen to the NICU child or to others in their family. It is also common for parents to experience flashbacks to their time in the NICU. Unexpected, sudden losses do that to people. They leave us feeling afraid and even vulnerable.

Former NICU Parent and NICU Parent Researcher Dr. Michael Hynan answers the question often asked of parents "Will I ever get over this [NICU experience]?" in this way:

No, you will not get over this completely. It is normal for you to feel the after shocks of this emotional earthquake.

Many of us high-risk parents have this vulnerability and these flashbacks to the NICU. And we also know that terror usually returns only briefly, and most of the time we can manage it as long as we realize that it is not unusual.

Dr. Hynan and colleagues in their research over the years discovered that these flashbacks and vulnerability are more common that most professionals expect.

Story Behind the Expression
I've often heard the expression "waiting for the other shoe to drop" and wondered where it originated. On the alt.usage.english website I was able to confirm that the phrase means "to await an event causally linked to one that one has already observed". In the form "drop the other shoe", meaning "say the next obvious thing" or "end the suspense."

The best explanation for the origin for the expression was it was based on an old joke.

A guest who checked into an inn one night was warned to be quiet because the guest in the room next to his was a light sleeper. As he undressed for bed, he dropped one shoe, which, sure enough, awakened the other guest. He managed to get the other shoe off in silence, and got into bed. An hour later, he heard a pounding on the wall and a shout:

"When are you going to drop the other shoe?"

Ending Our Suspense as NICU Parents
We were luckier than many NICU parents in that our NICU survivor did not have any major residual or ongoing problems. Her lungs were fine, her eyesight was good, she was meeting her milestones. I think by the time she was three we stopped worrying all of the time that something else would surface and slowly stopped listening for the other shoe to drop.

The scars from her IV's have begun fading with time, but will always be there, as will our scars from experiencing the NICU as parents.

Source:
Hynan M. Helping Parents Cope with a High-Risk Birth: Terror, Grief, Impotence, and Anger. Parent Care Conference.

Israel M. "wait for the other shoe to drop" alt.usage.english newsgroup.

Image Source: Josep Altarriba. Hanging Shoe. Royalty Free Use.

NICU Scrapbook Resources for Free from Miracle Bebe

Miracle Bebe, one of the new resources on the Internet for preemies offers a collection of scrapbook resources designed by a NICU mother for free.

You can visit their Preemie Scrapbooking Freebies to see their gallery of pages that include NICU records, growth charts, lactation records, journaling pages, birth announcements, conversion charts and others.

These pages can be printed on your home printer, and then embellished with photos or hand written content.

More about Miracle Bebe
Miracle Bebe is devoted to families touched by prematurity, and we hope that we offer a place of peace and healing. They offer online resources that will bring you the ability to share your memories of your birth experience, the NICU journey and to home.

NICU Admissions are Terrifying Experiences for NICU Parents

Research is slowly being published to support what NICU Parents have known all along—that the NICU experience is a terrifying and often traumatic event for those involved.

I shared some of my thoughts on the terrifying response to the NICU in the research paper that I wrote "Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response" published in Neonatal Network:

A NICU admission is a stressful time for the family personally, psychologically, and economically. The high-tech NICU environment is unfamiliar and intimidating for most parents.

The instruments, incubators, intravenous equipment, respirators, procedures, monitors, hospital jargon, lights, alarms, smells, and sounds can be terrifying for those unfamiliar with the intensive care setting.

NICU - An Alien Environment
I used this photo of an Alien Incubator in the presentation that I gave on "Grief in the NICU: Identifying, Understanding and Helping Grieving Parents" for the "Managing the Spectrum of Maternal Mental Health Issues from Conception through the Neonatal Experience" at the HHC Perinatal Conference held at Jacobi Medical Center.

I think this alien image really helps to convey to the NICU staff how many NICU parents are viewing the NICU experience. I used the image to be a reminder that for most people the NICU Staff's normal work place is a alien environment.

The NICU experience was a very foreign one for me as well. Even though I was used to being in the adult ICU, as a physician, the neonatal experience was like entering a foreign country or an alien science experiment.

Helping the NICU Parent
NICU professionals can be invaluable sources of support for NICU parents as they struggle to come to grips with the reality of having a baby in the NICU.

Providing orientations to the NICU—from basic hand washing and gowning techniques to explaining all of the 'bells and whistles' in the NICU equipment—can go a very long way in helping NICU parents adjust to this strange world in which their child is living.

What NICU Parents can Do
NICU Parents can become more comfortable with the strange NICU environment by asking questions about their newborn, getting involved with caring for their NICU baby and taking time to find out how the NICU works.

Taking the time to familiarize yourself with the NICU will help NICU parents learn how to function in this strange new environment. In time, you may even discover that you are able to help explain the procedures and equipment to other terrified NICU parents.

Sources:
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response. Neonatal Network May/June 2005; 24(4):35-46.

Image Source: Steve Jurvetson. Alien Incubator. Creative Commons.

CaringBridge Connect NICU Parents with Their Families

Another helpful resource for connecting NICU Parents with their Families is CaringBridge.

CaringBridge® is a 501(c)(3) nonprofit web service that connects family and friends during a critical illness, treatment or recovery.

Like CarePages, CaringBridge is another way of helping NICU parents stay connected with family and friends by creating a free, personalized web page.

What is a CaringBridge Web Page?

A CaringBridge web page is an easy way to keep loved ones informed during difficult times. Each CaringBridge website includes:

• Patient care journal to update family and friends
• Guestbook for messages
• Photo gallery
• Free online support for using the service

Some of the benefits of CaringBridge over other connecting web pages is that CaringBridge pages are offered in both English and Spanish. In addition they do not have banner ads or pop–ups.

You can read More about CaringBridge at the article on Type-A Mom.

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A related article is on the Type-A Mom site under the NICU section of Mom Stages.


More:

Dyer K. 2009. Becoming an Empowered NICU Parent. NICU Parent Support Blog.
Dyer K. 2008. NICU Parent Support CarePages. NICU Parent Support Blog.
Dyer K. 2008. Creating a Circle of Healing and Support. NICU Parent Support Blog.
Dyer K. 2007. CarePages - Connect, Share, Care NICU Parent Support Blog.

Zorbitz Lucky Karma Beads and Charms Help Focus Intentions

I know that if the Zorbits Lucky Lucky Karma Bracelets Karma Bracelets and Feng Shui Luck Charms were available when my youngest was in the NICU, we would have used them as another way to focus our energy and our intentions on her healing.

Like the Water Blessing Labels, the Zorbitz products provide positive affirmations and inspirational messages to help you focus your intentions. With NICU Parents trying to focus on love, health and miracles, wearing or hanging one of these products can work as a reminder of your intentions.

Even if you don't believe that there is any inherent power in the beads or the gemstones, what can change is yourself. The bracelet and luck charm can serve as a reminder to focus your thoughts and energy on positive words and intentions like health, love, miracles and strength.

Lucky Karma Bracelets

These are the bracelets that would have the best intentions for NICU parents.

• Unexpected Miracles - Karmalogy Beads
  
• Love/Friendship - Karmalogy Beads
  
• Health/Inner Strength - Karmalogy Beads
  

I own many of the Lucky Karma Bracelets and have given many of these lucky bracelets to friends and family.

Feng Shui Luck Charms

These are the luck charms that would have the best intentions for NICU parents.

• Unexpected Miracles - Feng Shui Luck Charms
  
• Peaceful Life - Feng Shui Luck Charms
  
• Love - Feng Shui Luck Charms
• Good Health - Feng Shui Luck Charms

I also own several of the Lucky Charms and have two hanging in the car and around the house. After hanging up an Unexpected Miracles Luck Charm in the car, I was able to solve the problem that I'd been having with my computer. The miracle was that I did not have to get an entirely new computer.

More about Zorbitz
The company products bring earth's gems and woods to give people the earth's healing qualities needed in your everyday life. They believe that everyone needs Zorbitz whether it's for love, health, wealth, or even an unexpected miracle.

Zorbitz is 100% women owned and determined to make a difference and the company believes in giving back. Zorbitz has contributed over $60,000 to charities around the world.

Dyer KA. Zorbitz - Lucky Karma Beads - Feng Shui Luck Charms. Squidoo.com

Inspirational Story: Micro Preemies Become Adults

This inspirational story comes from the NICU at Children's Hospital in Minnasota. Six former NICU babies, micro preemies, reunited with neonatologist Dr. Ronald Hoekstra, the physician credited with keeping them alive. These six former NICU babies are all college students now.

What is a Micropreemie?
A micropreemie or micro preemie is one that weighs less than 1000 grams, usually between 700-800 grams (1 3/4 pounds) and is born before 26 weeks of gestation. An average pregnancy is 40 weeks, with a weight of somewhere between 6 and 9 pounds.

In the late 1980's babies born before 26 weeks had about a 50% shot at survival. Today their survival rate is nearly 90%.



Dr. Hoekstra's Findings
Hoekstra found in the preemies he studied born from 1986 to 1989 one key to their survival is that they were remarkably resilient.

Even though some of the preemies in the group experienced problems ranging from poor vision to cerebral palsy (about 10 in the group) as a group they have been very successful. Nearly 90% finished high school and nearly 60% have continued on to college.

Dr. Hoekstra believes the key to the success of these micropreemies is eEarly intervention and parental support and follow-up.

"If you hang in there, a lot of these children will surprise you."

You can read more about the Micro Preemies at the article on Type-A Mom.

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A related article is on the Type-A Mom site under the NICU section of Mom Stages.


More on the Micro Preemies

Fowler J. May 2009. When Miracle Babies Grow Up! People Magazine.
Dyer K. May 2009. Inspiration from the NICU as Micro Preemies Grow Up. Type-A Mom.
Glick P., Irish M., Caty M., Pearl R. 2000. Pediatric surgery secrets. Elsevier Health Sciences p. 321.

Encouraging Message: Trust Yourself.

The words from one of America's most beloved Pediatricians and author, Dr. Benjamin Spock helped to empower generations of parents. His book Baby and Child Care was published in 1946 and became one of the biggest best-sellers of all time.

Trust yourself.
You know more
than you think you do.

Dr. Benjamin Spock

His message, which was revolutionary for the time, provides encouragement for NICU parents even today.

"Trust yourself" is a very helpful reminder for parents and a gentle aid for parents during troubling time. His simple message "Trust yourself. You know more than you think you do" can even be used as helpful mantra for worried NICU parents.

Image: Armin Hanisch. I wanna hold your hand. Royalty Free Use.