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Association of Perinatal Networks Premature Infant Health Network
Weekly Preemie Memo

 
In an effort to better understand the challenges premature infants and their caregivers encounter both in the NICU and when care begins at home, the Association of Perinatal Networks - through the facilitation of the Premature Infant Health Network (PIHN) - brings together those that provide care to premature infants and children to determine ways to improve services both in the hospital setting as well as in the communities where families live.
 
Please click here to subscribe to the weekly PIHN Preemie Memo directly. See below for a list of topics covered by past Weekly Preemie Memos.  

Please click a title to view the topic memo:
 
 
 


Genetics and Preterm Birth

 
As more research is conducted on the causes of preterm birth, evidence concerning the role of genetics continues to emerge.     
 
Some studies have shown a link between health disparities and genetics for preterm birth.  At Children's Memorial Hospital in Chicago, Dr. Strauss and Dr. Wang found that African American babies are three times more likely to have a genetic variation of the SERPINH1 gene that can cause weakened fetal membranes.  A weak membrane can rupture prematurely and result in preterm labor.
 
More recently, a study on recurrent preterm birth among specific families demonstrated a genetic component to the onset of labor.  Haataja et al. (2011) found evidence for linkage of the gene IGF1R with spontaneous preterm birth. This gene encodes an important protein that may regulate signaling cascades involved in the onset of labor.
 
In consideration of this information, it is important to note that DNA only represents one of the many components of human health and biology.  Environmental conditions have an enormous impact on health and disease and should be always be considered in conjunction with information on genetics.
 
Summaries of these studies can be found here and here
 
 
Information for this article was taken from the following sources:
 
 
 
 

RSV Season Reminders

 
It is currently half way through RSV season, and an important time of year to remind parents about the risk and prevention of RSV. 
 
RSV, a common virus that is contracted by almost all children by age 2, usually causes moderate to severe cold-like symptoms. In children with certain health conditions, however, the virus can lead to hospitalization or even death. 
 
Symptoms include fever, bluish lips or fingertips, coughing, wheezing, trouble breathing, or gasping for breath.
 
Specific risk factors for children born prematurely:
 
- Low birthweight
- Having school-aged siblings
- Attending daycare
- Family history of asthma/wheezing
- Presence of tobacco smoke or other air pollutants
- Crowded living conditions
  
Parents can help to protect their baby by following these guidelines:
 
- Wash hands thoroughly before touching your baby
- Don't smoke or allow others to smoke in your home or near your baby
- Regularly clean your baby's toys, clothes, bedding, and crib rails
- Avoid children and crowds when at public places, daycare, or family gatherings
- Keep your baby away from anyone with a cold or fever
  
For more information, visit the CDC or preemie voices
 
 
Information for this article was taken from the following sources:
 
MedImmune 2010.  "RSV: Is My Baby at Risk?" http://preemievoices.com/pdfs/11110_RSV_MECH.pdf
 
Centers For Disease Control and Prevention 2010.  http://www.cdc.gov/rsv/ 
 
 
 

Baby First: A Resource for Parents and Providers 

 
Parents and Providers of preemies alike are always on the lookout for new information and strategies in caring for these special infants.  Baby First is a resource that provides "Clinical knowledge and family focus.  All in one place."
 
Their "Parents' Corner" covers a variety of topics - general information on preterm birth, helpful information for the NICU stay, information for after NICU discharge, family stories, and resources.  Some unique articles in these categories include cultural practices in the NICU and promoting development after discharge. 
 
A tab for "Neonatal Care Practice" directs providers to a series of informational pages that range from general topics like NICU Design to specific issues such as thermoregulation.  Each page includes helpful resources that include research articles, videos, and lectures. 
 
 To visit the Baby First website, click here.
 
Information for this article was taken from the following sources:
 
2011.  Draeger Medical Systems, Inc.   Baby First: Clinical Education and Parental Support for Premature Infants.  www.babyfirst.com
 
 
 

NICU Stress in Preemies: Delays and Helpful Strategies

Premature infants often experience delays in development, but a recent study suggests that NICU stress could contribute to those delays. 

 
St. Louis Children's Hospital in Missouri conducted a study measuring stressful events in the NICU and evaluated brain structure and function using an MRI.  The study found that average daily exposure to stress was highest within the first two weeks in the NICU, which correlated with a decrease in frontal and parietal brain width, altered microstructure and connectivity, and lower reflex scores.  (To read more about this study, click here.)
 
Stresses in the NICU can range from diaper changes to intubation.  A variety of methods can be used to reduce stress, such as instituting low light and low noise policies in the NICU.  Another proven tool in reducing stress is the use of comforting touch and massage on preterm infants.  Numerous articles have been published on the benefits of these techniques and can be found here. 
 
 
Information for this article was taken from the following sources:
 
Oct. 2011.  US News - Health Day.  Stress May Effect Preemies' Brains, Study Shows.  http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2011/10/04/stress-may-affect-preemies-brains-study-shows    
 
  
Dec. 2001.  Lynda Law Harrison.  Use of Comforting Touch and Massage to Reduce Stress in Preterm Infants in the Neonatal Intensive Care Unit.  http://www.prematurity.org/baby/comforting-touch1.html
 
 

Decline in C-Sections and Preterm Birth Suggests Link

 
Recently, it was announced that national c-section rates and preterm birth rates had declined for 2010.  While preterm birth has been slowly decreasing over the last 4 years, C-section rates haven't decreased in about a decade.
 
Dr. Adam Wolfberg wrote an article about his assertion that the two rates are related, "and for all of the right reasons," Wolfberg explains.  "The c-section rate in the U.S. shot up over the past four decades from 5 percent in 1970 to its current rate [32.8%] for lots of reasons -- more fetal monitoring, more lawsuits, fewer vaginal deliveries after a prior c-section and convenience." 
 
Wolfberg goes on to disucuss the dangers of an elective delivery by c-section, stating that the baby could be delivered preterm for reasons ranging from an unknown date of conception to convenience.  As more evidence emerged revealing the crucial nature of the last few weeks of pregnancy, public health officials and activist obstetricians began creating and enforcing policies against optional delivery prior to 39 weeks.  Dr. Wolfberg credits these poilicies, which were put in place anywhere from 3-10 years ago, with the improvement in rates of c-section and preterm birth.
 
To read this article, click here.
 
 
Information for this article was taken from the following sources:
 
Nov. 2011.  Adam Wolfberg, MD.   C-sections and Pre-term Births on the Decline -- Is There a Link?
 
 


The Importance Breast Milk for Preemies

 
While most people know that infants benefit from a diet of breastmilk, many do not know how breastmilk can play an essential role in the health and protection of a premature infant, especially in the NICU. 
 
On National Prematurity Day, a Mississippi news station covered a story about the importance of breastmilk and its use in the NICU.  Memorial Hospital's NICU Medical Director Dr. David Kuhlmann spoke to the healing properties of breastmilk, stating that the earlier a baby is born before term, the more important breastmilk becomes.  The NICU lactation consultant added that preterm babies who receive a breastmilk-only diet have an 86% reduced chance of having an infection in the gut; a partial breastmilk diet will still decrease the infection rate by 66%. 
 
As is sometimes the case with preterm births, mom might not begin producing milk until long after the birth of their infant.  This is one of the main reasons milk banks can be crucial to a hospital - babies can be given breastmilk from the bank until mom is ready and receive the same benefits of a breastmilk diet. 
 
To watch the video or read the article for this news broadcast, click here.
  
 
Information for this article was taken from the following sources:
 
Nov 17, 2011. Mothers' milk is the best medicine for premature babies.  http://www.wlox.com/story/16061936/mothers-milk-is-the-best-medicine-for-premature-babies
 
 
 
 

Delays and the Role of Early Intervention

 
For many children born prematurely, the Early Intervention Program can be a crucial resource.  However, some children may not be referred due to a lack of provider knowledge of the special needs of childen born preterm.
 
A variety of developmental delays can characterize childhood for children born prematurely, and a recent study demonstrates how some of these delays can continue past infancy.  The American Academy of Pediatrics recently published the results of research done on children born moderately premature (32-36 weeks), and found that preterm-born children were shorter and weighed less on average than their term-born counterparts at each assessment during the first 4 years of life.
 
Physical growth delays aside, preterm-born children can also experience other long-term complications such as vision and hearing impairment, breathing problems, chronic infections, hyperactivity, learning difficulties and more.  Useful services provided by Early Intervention include family education and counseling, speech pathology and audiology, vision services, occupational and physical therapy, psychological services, and nutrition services. 
 
To find out more about the Early Intervention Program in New York State, or to find an Early Intervention near you, click here.
  
 
Information for this article was taken from the following sources:
 
2011.  Bocca-Tjeertes, Kerstjens, Reijneveld, de Winter, Bos.  Growth and Predictors of Growth Restraint in Moderately Preterm Children Ages 0 to 4 Years.  American Academy of Pediatrics, 128 (5): e1187-e1194.
 
 
 
 

Elective Delivery: The Effects of Perception

 
Although it may be clear to those who work in maternal and child health, a recent study shows that the public is largely unaware of the risks surrounding an elective delivery for a healthy pregnancy prior to 39 weeks gestation. 
 
In 2009, Obstetrics & Gynecology published the article "Women's Perceptions Regarding the Safety of Births at Various Gestational Ages" which had some striking results.  When asked how long a full-term pregnancy lasted, nearly 75% of women answered before 39 weeks.
 
In response to "What is the earliest point in pregnancy that it is safe to deliver the baby, should there be no other medical complications requiring early delivery?", over 90% of women answered with a response before 39 weeks.
 
These opinions contrast greatly with the results of several recent articles documenting the risk of infant morbidity and mortality associated with premature birth and elective delivery before 39 weeks.  Researchers from the March of Times, NIH, and FDA found that, although the overall risk of death is small, it more than doubles for infants born at 37 weeks of pregnancy compared to 40 weeks.
 
For more information on why the last weeks of pregnancy count, click here.
 
 
Information for this article was taken from the following sources:
 
 
Goldenberg RL, McClure EM, Bhattacharya A, Groat TD, Stahl PJ. 2009. Women's perceptions regarding the safety of births at various gestational ages. Obstetrics & Gynecology;114(6):1254-8.
 
Reddy, Uma M. 2011. Term pregnancy: a period of heterogeneous risk for infant mortality. Obstetrics & Gynecology 117(6).  
 
 
 

Parent to Parent - Fostering Family Support

 
It is often said that the only people who truly know what it's like to be a parent of a preemie are other preemie parents - and this is exactly why Parent to Parent is an excellent parent resource.  Parent to Parent offers a Parent Matching Program that allows a parent to speak to a Volunteer Support Parent for support and to share their story.  They also offer Parent Support Training for parents who want to support other parents with similar experiences, and information on how to start a support group in your community.
 
Another critical tool that Parent to Parent offers is a Health Care Notebook which enables families to record and chronicle their child's health care information.  Since prematurity can impact a person for the rest of their life, this could be valuable for families to have information on as they try to make sense of all the medical information they will receive about their preemie.  Parent to Parent coordinators can provide orientations on the notebook in a group setting or provide a 1-on-1 phone support to help a family begin organizing all of that information. 
 
Coordinators are located around the state and cover every county.  It may be helpful to families as they juggle all the paperwork, doctors, specialists, tests, etc.                                  
 
For information on what a support parent does or how to become one, click here.  To find other support groups in your area and nationwide, click here.  
 
 
Information for this article was taken from the following sources:
 
Parent to Parent.  www.parenttoparentnys.org Nov. 2011.
 
A special thanks to Michelle Cole, Regional Coordinator from Parent to Parent of NYS, for her help with this article.
 
 
 

Parent and Siblings of Preemies: Support and Understanding

  
Just as it is beneficial for parents of preemies to have a support group, siblings of preemies need encouragement and guidance from others. Sibling support can come from parents, fellow families of preemies, and even the community. It is important that a preemie's sibling is given information and emotional support about their sibling's condition that is appropriate for their age and capabilities.
 
Hand to Hold is an organization that provides (among other things) information and support for parents and families on preemie sibling issues. Some of their resources include a peer match system that puts parents in touch with other families that have similar experiences with sibling needs, a list of children's books approved for explaining health situations and loss for siblings, and a blog that covers preemie sibling topics from a parent's perspective.
 
They also host a variety of events for siblings of preemies and, although they are hosted Austin TX, have been used as inspiration for creating unique events in other areas. Arnot Health (located in Elmira and Bath, NY) is one organization that holds an "Ice Cream & Isolettes" gathering where preemie siblings and their parents can meet.  For more information on this program, click here.
 
 
Information for this article was taken from the following sources:
 
Hand to Hold, 2010.  Sibling Support.  http://handtohold.org/support/sibling-support/ 3 August 2011.
 
Hand to Hold, 2010.  Parent Support.  http://handtohold.org/support/match/ 3 August 2011.
 
Hand to Hold, 2010.  Books for Children.  http://handtohold.org/support/sibling-support/books-for-children/ 3 August 2011.
 
Romero, L. via Hand to Hold, 5 July 2011.  Siblings Soar Blog.  http://handtohold.org/siblings-soar-blog/
 
 

How to Pick a Pediatrician for Your Preemie

 
Like all babies, setting up a preemie's first doctor appointment is an essential part of coming home.  Babies born prematurely should have a pediatrician with knowledge of your baby's NICU history as well as health issues and adjustments associated with prematurity. 
 
Be sure to fully research a pediatrician before deciding to choose them - the better matched they are for your infant's needs, the less potential misunderstandings occur.  If possible, consult with other parents who have already gone through the process of finding a pediatrician for their premature infant and ask how they made their decision.
 
Sometimes preemies can be referred to an early intervention program by NICU staff or by other parents. These programs are free and can provide many services to babies who have or are at risk for developmental problems as premature infants are. Also, some hospitals provide follow-up programs to check in on their NICU graduates' progress. Contact your baby's health care team to find out if these resources are available.
 
Finding the right pediatrician is one of many big steps towards preparing for your preemie to come home.  For tips on picking a pediatrician and other advice for leaving the NICU, visit the March of Dimes.
 
 
Information for this article was taken from the following sources:
 
March of Dimes, 2011.  Leaving the NICU.  http://www.marchofdimes.com/baby/inthenicu_leaving.html  4 August 2011.
 
Hand to Hold, 2010.  Parent Support.  http://handtohold.org/support/match/ 3 August 2011
 
 
 

Insurance, EOBs, and Claims for Preemie Parents

 
Caring for a baby that is frequently ill can be costly for families, and constant negotiation with insurance companies is not uncommon for preemie parents.  Kathryn Whitaker, the parent of a premature infant, created a list of useful tips for navigating through the finances of having a preemie (paraphrased and summarized):
  • Create a notebook. Suggested dividers include: Bills - (discharge summaries, doctor instructions) and Government/ECI. This will help you keep the paperwork in order and will be helpful for conversations with medical providers and insurance companies.
  • Keep a log. Write the name of the person you spoke to, the date, time, and the result. That way, you have a reference for the next call.
  • Ask for a supervisor or manager. Most complex issues need the supervisor's expertise, and asking for them up front will save you from being put on hold for a long time.
  • Request an e-statement. Ask for an e-statement to have record of claims, what was paid, what amount was applied to your deductible and to your in-network out-of-pocket expenses.
  • Negotiate. Providers will tell you they only have a three, six- or nine-month payment plan, and try to make you choose, though there's no service charge associated with paying on your schedule.
  • Reprocess your claim. If your insurance company turns down a claim because it's "not under your coverage plan", request that it be reprocessed. Even if it was an out of network (OON) provider, but they performed the service in network (IN), you are covered.
  • Request an itemized hospital bill. Ask the hospital to send you an itemized bill.  If you notice a charge that doesn't fit or if you were charged more than once, contest the bill.
  • Follow up. If a provider rep says they will reprocess the claim and resubmit it to your insurance company, ask for the timeframe and then tell them you plan on calling and confirming. Do the same for your insurance company.
  • Develop a relationship with one insurance agent. Ask for the same customer service representative every time you call.
  • Ask questions. If something doesn't look right, call and ask.  It never hurts to ask.
To see the full article, click here.
 
 
Information for this article was taken from the following source:
 
Whitaker, Kathryn, via Hand to Hold, 2010.  Navigating Claims, EOBs, and Insurance Companies.  http://handtohold.org/resources/helpful-articles/navigating-claims-eobs-and-insurance-companies/ 3 August 2011.
 
 
 

Preemie Parent Highlight 

 "My Late Bloomer" By Kathryn Kear
 
"You were my miracle baby, in every possible way. I'd fought two years of infertility and four early miscarriages. Only my mother knew of each unsuccessful pregnancy, most only a day long.
When I went to try IVF, the doctor said this one won't take, we're just seeing what the protocol is to get and keep you pregnant.
 
So I tried not to hope.
 
When you made me so sick as you implanted, I hoped. I knew that the sicker I became, the stronger your likelihood of staying. So I hoped to be sick a while. And I was. At each appointment, I held my breath. Was he still alive? Ah yes, there is the heartbeat!
 
I was told you were going to be early. For women who get contractions as early as I did, research said an early delivery was inevitable. I was told to take it easy.  So I did.
 
And then you decided it was time.
 
For 11 days, you fought to arrive. And for 11 days, I fought to keep you in me just a little longer.
 
But you would not stay in there. 10:22 p.m. By emergency surgery, you were born. I heard your mewling kitten cry and knew you. Nathaniel. My little Natty.
 
All I got was a glimpse, a dark face, turquoise blankets around you, held in the doctor's hands, so tiny. And then you were gone, taken to the place that held all the equipment, in case you needed it. The wait to meet you was interminable. Hopped up on painkillers, I finally met you, 6 hours later. I saw you on the table, hooked to monitors, sleeping peacefully, as your doctor explained how you were doing.
 
Love occurred as I looked at that little foot.
 
By morning, you had hit the ropes. You were sick, very sick. As your condition worsened, I worried. You were the sickest child in the NICU - I was in shock. When I found a card from the chaplain that said she prayed over you, I cried. I could leave it in God's hands now. He had you. I didn't realize it then, but He always had you. He still does.
 
It was a tough NICU fight but you eventually overcame things. Big leaps of development then little things. Fine-tuning, I like to say. When I was finally sick of the NICU, they sent you home. We were together. I was so scared. But you kept right along.
 
You missed milestones. Honey, you have missed so many milestones, I stopped counting. You didn't sit by six months. You didn't sit by nine. You didn't have speech production for months.
You didn't sleep through the night. You didn't wave. You still haven't waved. You lost speech. You got it back but not the same words. You are my late bloomer, in every measure.
 
You were sick, so sick. Oh, not as sick as some preemies. Some come home with permanent damage from being born so early. You had it too, but it was more discrete, smaller. Your eustachian tubes were too short. Your stomach sphincter was undeveloped. Tiny things in the grand scope of life. And your immune system was underdeveloped. In one six month period of time, you had 18 colds, 8 ear infections, 5 croup attacks, 2 sinus infections, one yeast infection, and were diagnosed failure to thrive. But you had your doctors, your coterie of men and women who fought for you.
 
People don't understand why your accomplishments are so important to me that I have to shout them from the rooftops. It's because you are late on almost everything. Other children simply grow, develop. To get you there, it takes hours of therapy, hours of trying, missed milestones, prayers. Nothing in your life is easy for you, Natty.
 
It's why I well up when you do these amazing things. Not many people know how hard it is for you. They see a happy child. They don't see the missed milestones, know how sick you were, or know how long it took you to sleep through the night. No, they see a happy, healthy little boy.
 
So if I crow a little too loudly about an accomplishment, please bear with your mother. I know how hard you have fought to get there...I saw.
 
You are my late bloomer...and you will always be my little miracle."
 
 
 
 

Photographing Your Baby in the NICU

 
Parents of premature infants may have mixed feelings about photographing their preemie - the excitement of a new baby can be overshadowed by fear and confusion.  However, most parents who photographed their premature babies in the NICU are happy they did, as it can help parents appreciate their baby's growth and progress.  The March of Dimes has published a NICU journal for parents which features a set of tips for photographing in the NICU, the following is a summary of those tips:
 
1. Turn off the Flash.  The flash of a camera can frighten a baby and interrupt the NICU environment.  Use window light or overhead lights.
 
2. Step Back or Get Close.  Disposable cameras do not have the ability to focus and can therefore produce blurry pictures.  Take a few steps back to compensate for this.  If you have a camera that allows focusing, take advantage of being able to photograph details like your baby's face, feet, and hands. 
 
3. Think in Black and White.  Using black and white film or converting your color photos to black and white can soften the content of the image by downplaying a baby's red skin or the shine from medical equipment. 
 
4. Put Your Baby in Context.  When photographing your baby, use an object of reference to show how small they began and to document their growth.  The object can be anything, as long as the items are removed after photographing. 
 
5. Special Occasions You Might Want to Remember. Take pictures for the following milestones: when your baby is weaned off the the ventilator, when your baby no longer has tape on their face, first-time bottle or breast feeding, first sibling visit, first bath time, and moving from the incubator to the crib.
 
6. Don't Forget Your Baby's Caregivers.  During your baby's stay in the NICU, there are a variety of professionals who who play an important role in the well-being of your preemie.  Take pictures of those special caregivers with your baby to document those who have made a difference.
 
7. Share Those Photos.  Sharing photos and updates with your friends and family can help them keep up with your baby's life in the NICU.  Staff love to hear about NICU graduates, so send the NICU a photo with an update on how your child is doing.
 
8. Don't Expect Perfection in Your Photos.  If photographing is too overwhelming, leave a camera with the nurses and ask them to take some photographs.  It's okay if the pictures aren't perfect, because the memory of the photo tends to mean more to parents than the composition.
 
The NICU Journal also has a number of other useful tools inside, such as a glossary of NICU terms and a section on how to keep up with changes in your baby.  In addition, there are some charitable organizations of professional photographers, like Pictures of Hope, who can provide photography services to families with premature infants. 
 
Before making decisions about photographing your baby in the NICU, ask the staff about their camera policy.
 
 
 
Information for this article was taken from the following sources:
 
American Academy of Pediatrics, and March of Dimes, 2010.  NICU Journal - A Parent's Journey.  Photographing Your Baby in the NICU. 
 
Pictures of Hope, 2011. Pictures of Hope, Made with Love.  http://www.picturesofhopefoundation.org/ 3 August 2011.
 
 

NICU Support Programs

 
Due to the confusion and stress the NICU can cause, it is important that hospitals provide support for families through groups and programs where they can share their feelings and experiences. 
 
Like many people who experience traumatic events, families in the NICU benefit greatly from the interaction and support of others who are going through similar trials.  Support can come in a variety of models - hospital based, volunteer based, commuity based, or an in-house resource like the March of Dimes kiosk.  Often times, these models overlap or are combined.  Unfortunately, family support programs for parents of preemies are far from universal.  This is seen as the next step to providing truly comprehensive NICU care.
 
Setting the bar for support groups are existing programs such as NICUPS, or Neonatal Intensive Care Unit Parent Support.  While based in Missouri, NICUPS provides a variety of in-house and online support, including one-on-one, parent group meetings, breastfeeding support, parent library with online resources, and support for those who are expecting after a previous NICU experience. 
 
Another organization that is well known for supporting NICU parents is the University of Utah Hospital's Parent to Parent program.  They operate with parent volunteers who have similar experiences in the NICU who give support to parents experiencing the NICU for the first time, and provide helpful information for NICU parents including an online NICU glossary.   
 
 
Information for this article was taken from the following sources:
 
St. John's Mercy Health Care, 2011.  Neonatal Intensive Care Unit Parent Support.  http://www.stjohnsmercy.org/services/nicups/default.asp 3 August 2011.
 
Parent to Parent, 2009.  Parent to Parent, University of Utah Hospital, Salk Lake City.  http://www.parenttoparentutah.org/  3 August 2011.
 
Parent to Parent, 2009. Parent to Parent, University of Utah Hospital, Salk Lake City, NICU Glossary. http://www.parenttoparentutah.org/ 3 August 2011.
 
 
 

Helpful Resources: Special Delivery and Advocacy Tool Kit

 
It can be difficult for premature infant advocates of all levels to know where to begin.  Parents in particular expressed a deep concern for not knowing how to advocate for their premature infant at the PIHN meetings in 2010.  Resources like the Advocacy Tool Kit and the Special Delivery program can be equally useful for professionals, parents, families, and advocacy groups. 
 
The Advocacy Tool Kit is a PDF named "Voices for the Voiceless: a Premature Infant Advocacy Training Guide."  The document provides the information, guidance and resources necessary to become an effective advocate for preemies, no matter what level of involvement you may have in advocacy action.  The Tool Kit is also a comprehensive educational piece that gives an overview of the issues related to prematurity and their prevalence.  Included in the document is a set of tools one can use on any level of advocacy, which can prepare someone for advocating for other families or their own. 
 
The Special Delivery program is specifically directed at helping advocacy groups, allowing them to order materials with topics that are relevant to parents with premature infants and customize them with the organization's logo.  This strategy helps advocacy groups promote their services while distributing information on preemies to parents.  The topics include specific premature infant issues - from health problems like RSV and lung complications, to medical costs and special accommodations parents should make for their preemie.  You can register for the Special Delivery program by visiting Navigating the Premature Journey
 
 
Information for this article was taken from the following sources:
 
MedImmune, LLC 2011.  Special Delivery: Handle with Care. 
 
MedImmune, LLC 2011.  Preemie Voices: A Voice for Premature Infants. http://www.preemievoices.com/news/ 12 August 2011. 
 
 

 PTSD and NICU Parents

 
While any preemie parent could describe the emotional stress associated with the NICU, there are increasingly more studies emerging in support of the serious nature of these effects.  Researchers at both Stanford University and Duke University have uncovered evidence of significant NICU-related PTSD in parents. 
 
PTSD is commonly thought of as being associated with experiences of war or assault, and is now being recognized in parents of NICU babies.  Dr. Richard J. Shaw of Stanford outlines the multiple stages of traumatic events, beginning with the unexpected delivery, and followed by the medical procedures and emergencies of the infant along with the regular series of bad news.  Interestingly, PTSD symptoms were more common among mothers during the NICU stay but were more common in fathers 4 months after birth. 
 
These studies have helped bring to light the desperate need for parent support groups in hospitals.  While a few hospitals provide some form of support program, most are more concerned with saving the infant's life than caring for the mental health of parents.  Not only is support essential for the parents as individuals, it can also be a necessity to their partnership and parenthood.  Symptoms of PTSD can include depression, anxiety, anger, and aggression, which can cause alienation in all relationships - including those between a parent and a child.  Some parents may be so traumatized they are discouraged from wanting to hold their baby or spend time with them in the NICU, depriving them of valuable attachment.  Later at home, parents may have extreme reactions to minor medical issues with their child - which may teach them to get attention through physical complaints.
 
Overall, experts agree that parents at risk for developing PTSD should be prepared in recognizing symptoms and coping.  Even if your local hospital does not have a support group, the March of Dimes hosts an online community resource where parents can share their experiences and get involved.
 
For more information on this article, click here.
 
 
Information for this article was taken from the following sources:
 
Tarkan, Laurie via The New York Times, 24 August 2009.  For Parents on NICU, Trauma May Last.    http://www.nytimes.com/2009/08/25/health/25trau.html?pagewanted=all 2 August 2011.

March of Dimes Foundation, 2011.  Share Your Story. http://shareyourstory.org/ 2 August 2011.
 


Reading in the NICU Aids Relationships and Early Learning

 
On it's own, reading to your baby can be a relaxing way to spend time with them.  But now, according to a study published in the Journal of Developmental and Behavioral Pediatrics, parents can help aid the bonding disruption in the NICU by reading to their preemie. 
 
Parents of preemies usually miss out on the holding, cuddling, and nursing that occurs right after birth in healthy newborns.  Instead, premature infants are immediately taken away for emergency care and in some cases cannot be touched or held by their parents for extended periods of time.  According to these researchers, reading can help supplement that missed opportunity for bonding.
 
Out of 120 families, 70% of parents reported that reading increased the attachment to their babies during their stay in the NICU.  In addition, the study found that parents who read to their baby in the NICU were three times more likely to continue that reading habit at home.  Reading to any baby prepares them for talking, and premature infants could especially benefit since they often have delays for developmental milestones. 
 
Parents who read to their infant in the NICU also found that the activity helped them experience a sense of normalcy and control. 
 
 To see the full article, click here.
 
 
Information for this article was taken from the following source:
 
Rochman, Bonnie, via Time, Inc. 10 January 2011.  Reading to Newborns in the NICU Boosts Bonding.  http://healthland.time.com/2011/01/10/reading-to-newborns-in-the-nicu-boosts-bonding/

 

 

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