In this issue: World Prematurity Day, RSV policy brief, NMA calls for RSV protection in black infants, and more
In this issue of Preemie Matters: NICU Helping Hands • Preemie Parent Alliance Summit • Online Calculator Predicts Sepsis in NICU Newborns • High-Volume Neonatal Units May Increase Survival for Preterm Newborns • Late Preterm Birth May Alter Brain Growth • RSV Prophylactic Policy Statement from AAP
NICU Helping Hands
NICU Helping Hands-Family Support for Fragile Beginnings was first created in response to the growing need in Fort Worth, Texas for a local organization to support preemie families during their stay in the NICU and transition home. Their reach has since expanded nationwide to provide emotional, educational, and financial support to parents coping with the challenges of having a premature infant. Programs include mentorships that connect NICU families with experienced graduate families, opportunities for parent and professional education, and a robust hospital program, Project NICU, to enhance the support and education that NICU staff provide to families. In addition, NICU Helping Hands' Angel Gown Program comforts grieving families in the hospital by providing a beautiful infant burial gown to honor their child. To learn more, visit their website.
Preemie Parent Alliance Summit: September 12-14, 2014
The Preemie Parent Alliance (PPA) will host its annual summit September 12-14 in Phoenix, Arizona. This weekend-long event will bring together preemie parent leaders from across the country to learn about the latest research in family support and preemie development and to share best practices and ideas for reaching families affected by preterm birth. New topics this year include: "Newborn Behavior Observation," "Resolving through Sharing," "Big Data in the NICU," and "Forming Lasting Partnerships." Among this year's speakers are Alan R. Spitzer, MD-- a leader in academic neonatal medicine, Jill Wilke, RN, BSN, CPLC-- Lead Educator for Resolve Through Sharing at Bereavement Services, and Nick Hall-- Graham's Foundation President. For more information and to register for the summit, visit the PPA website.
Online Calculator Predicts Sepsis in NICU Newborns
Kaiser Permanente's Division of Research has developed an online calculator to help NICU providers predict if newborn babies are at risk for sepsis, a much more comprehensive method than previously used. By entering in the gestational age, the highest maternal antepartum temperature, rupture of membranes (ROM), and other information related to the pregnancy, the calculator yields a probability of early-onset sepsis per 1,000 babies. The calculator employs an algorithm based on extensive research using patient data from Kaiser's electronic health records. They are also using large data sets to determine ways to reduce bowel infections in preterm infants, the time the infants spend in the NICU, and the frequency of blood-stream infections they acquire from central intravenous lines.
High-Volume Neonatal Units May Increase Survival for Preterm Newborns
In a new study published in BMJ Open, researchers in the UK determined that high-volume neonatal units were associated with increased chances of survival for prematurely born infants. The neonatal units were defined as high-volume if they provided at least 3,480 days of care each year to babies born before 32 weeks of pregnancy. The researchers examined 17,955 premature infants (born between 27-32 weeks of pregnancy) and 2,559 very premature infants (born after less than 27 weeks) admitted to 165 British National Health Service hospital neonatal units in England. Of these babies, the increase in survival rate ranged from 30 percent for premature babies to 50 percent for very premature babies if they were admitted to a high-volume unit. The researchers emphasized that their findings have important implications for policymakers deciding the future organization of neonatal care.
Late Preterm Birth May Alter Brain Growth
A recent study published in Radiology conducted by Walsh and colleagues from Royal Women's Hospital in Melbourne, Australia concluded that late preterm babies experience different brain development than babies born full-term. The study involved performing MRI exams on 199 late preterm infants born between 32 and 36 weeks and 50 infants born after 37 weeks gestation. Walsh was surprised to learn the extent of brain formation differences that the late preterm babies exhibited compared to their full-term counterparts, "Many areas of the brain were affected, and their brains looked less mature than might have been anticipated." The late preterm infants displayed less-developed myelination and immature gyral folding, essential processes in early brain development that could potentially result in intellectual challenges, cerebral palsy, and difficulties breathing, seeing, and hearing. In response to the study's finding, Dr. Edward McCabe, senior vice president and chief medical officer of the March of Dimes, reiterated the importance of allowing pregnancies to reach full term to ensure optimal brain development. The researchers acknowledged that further research is needed to determine what these brain differences mean and whether they will lead to adverse long-term health effects.
RSV Prophylactic Policy Statement from AAP
The AAP's Committee on Infectious Diseases and Bronchiolitis Guidelines Committee--in collaboration with other AAP groups and external partners--recently revised their guidance on palivizumab prophylaxis (Synagis®) for the prevention of severe lower respiratory tract infection caused by respiratory syncytial virus (RSV) in high-risk pediatric patients. Most notably, palivizumab prophylaxis is now only recommended for infants at less than 29 weeks gestation and for infants with chronic lung disease who require supplemental oxygen for more than 28 days after birth. Prophylaxis is not recommended during the second year of life except under certain circumstances, nor is monthly prophylaxis recommended for children who experience a breakthrough RSV hospitalization. A detailed summary of the updated guidance is available in AAP's official policy statement and technical report. The NPIHC supports parent and professional input on guidelines. To provide comments or review the PreemieWorld petition, click here.
Information is reported as provided and does not necessarily represent the view of the National Healthy Mothers, Healthy Babies Coalition. A complete copy of HMHB’s disclaimer is available on our website.
In this issue of Preemie Matters: NICU Transition Toolkit • AWHONN Convention • Breast Milk Benefit to Preemies • Gut Bacteria Linked to Infections in Preterm Babies • Parents of Preemies Day • Burnout in the NICU
AHRQ's Transitioning Newborns from the NICU to Their New Home Toolkit
The Agency for Healthcare Research and Quality (AHRQ) recently launched a toolkit to enhance the process through which infants are discharged from the NICU. The Transitioning Newborns from NICU to Home Toolkit, with resources for medical professionals and parents to create a smooth and safe transition into the home environment for fragile newborn infants, includes: Health Coach Programs, Information Packets for Families, NICU Needs Assessment, Clinical Materials to Share with Primary Care Providers, and Follow up Telephone Surveys. This free-of-charge manual was designed to be adapted for any institution that cares for preemies and other fragile newborns.
The Association of Women's Health, Obstetric, and Neonatal Nurses (AWHONN) is a nonprofit membership organization committed to improving and promoting the the health of women and newborns, as well as strengthening the nursing profession through research, education, and advocacy. AWHONN provides nurses and other professionals with clinical resources, guidelines, publications, and extensive support. AWHONN will host their annual convention June 14-18 at the Disney Coronado Spring Resort in Orlando, Florida. Attendees at the upcoming convention will be inspired to become better healthcare providers, leaders, and professionals in their field.
Breast Milk Confers Benefits to Preemies
According to data presented at the 2014 Pediatric Academic Societies Annual Meeting, maternal breast milk confers important benefits to preterm infants. Dr. Katherine Gregory and colleagues from Brigham and Women's Hospital concluded that feeding with maternal breast milk may not only help establish an optimal pattern of infant gut microbiota, but may also help protect against the use of antibiotics at birth. The researchers investigated the effect of different feeding patterns on the establishment of preterm infants' intestinal microbiota. Thirty preterm infants aged less than 32 weeks' gestation received either maternal breast milk, pasteurized donor human milk, or infant formula. The study found that all groups experienced a high frequency of Staphylococcus during the two weeks of observation, but those fed breast milk had the lowest incidence. Additionally, the infants given breast milk lost fewer phylotypes after exposure to antibiotics and recovered their microbiota more quickly compared to the infants in the other groups. "The analyses underscore the importance of feeding in establishment of the preterm infant intestinal microbiota," say the researchers.
Gut Bacteria Can Cause Life-Threatening Infection in Preterm Babies
A new study published in the Clinical Infectious Diseases Journal suggests that twenty percent of premature infants are at risk for contracting the life-threatening bloodstream infection, late-onset sepsis. Little is known about the environment in which sepsis flourishes, which motivated researchers to conduct a cohort study of 217 premature infants at risk for sepsis. Senior author Dr. Philip Tarr stated, "The germ that invades the infant's blood flourishes in their gastrointestinal tracts for at least a few days before it causes sepsis." Additionally, the researchers determined that "infants whose NICU stays overlapped occasionally transmit the bacterial infection to other infants." The findings from this study should be used by healthcare professionals to develop a treatment strategy for this life-threatening bloodstream infection to protect the health of the fragile infants in the NICU.
Parents of Preemies Day
Parents of Preemies Day (PoPD) is a day of awareness created to recognize the courage and commitment of millions of preemie parents who stay strong and resilient during an extremely challenging time. On May 4th, hundreds of parents across the country celebrated the 4th annual PoPD through community events, NICU reunion events, at home, in NICUs, and online via the second annual PoPD Twitter chat. Thanks to coverage from BlogHer, preemie parent bloggers, and various newspapers, more people now know about Parents of Preemies Day than ever before! Learn more about the day on Facebook or http://parentsofpreemiesday.org.
NICU Workers Report up to 54% Burnout
An analysis of a survey administered to healthcare workers at 44 NICUs reported burnout rates from 7.5 percent to 54.5 percent, according to a study in BMJ Quality and Safety. Non-physician staff members tended to report more burnout than physicians. Higher burnout rates were associated with the lack of a teamwork-like environment, lower job satisfaction, lower management skills, and poor working conditions. Overall, NICU caregiver burnout is correlated with lower perceptions of an organization's commitment of a patient safety culture.
Information is reported as provided and does not necessarily represent the view of the National Healthy Mothers, Healthy Babies Coalition. A complete copy of HMHB’s disclaimer is available on our website.
In this issue of Preemie Matters: American Academy of Pediatrics Policy Statement and Clinical Reports on Preemie Care • Preemies Today •Talking to Preemies in the NICU Improves Language Skills • Neonatal Abstinence Syndrome Symposium • Increasing Human Milk Consumption in the NICU • Mark Your Calendar for 2014 Conference
AAP Policy Statement & Clinical Reports on Preemie Care
A new policy statement and two clinical reports published last month by the American Academy of Pediatrics (AAP) address the care of preterm infants. The policy statement covers respiratory support at birth, suggesting that clinicians consider the use of CPAP at or soon after birth with subsequent selective surfactant, as an alternative to routine intubation with prophylactic or early surfactant administration. A clinical report on surfactant replacement therapy updates a 2008 clinical report and underscores the policy statement's message about the use of CPAP. The second clinical report provides guidance, a literature review, and a cost-benefit analysis on the use of inhaled nitric oxide for preemies.
Preemies Today is a nonprofit organization based in the Washington, D.C. area that provides families with the latest prematurity education, a parent-to-parent support group, preemie care packages, hosts family outings, and initiated a local preemie playgroup. Preemies Today sends out a monthly e-newsletter, hosts Facebook chats, and can also be found on Twitter. Along with the SIDS Mid-Atlantic group, Preemies Today will host a support group on Thursday, March 6th for anyone affected by the loss of a baby. The event's goal is to provide an inclusive, understanding, and patient environment where families and preemies can come together for support, education, and to discuss their own NICU experiences.
Talking to Preemies in the NICU Improve Language Skills
A new study published in the journal Pediatrics suggests that exposing preemies to more adult, conversational language in the NICU pays off in their language abilities at 18 months, leading researchers to conclude: "We need to provide more information to families about the importance of talking to these babies in the neonatal ICU." The study - which included a cohort of 36 preterm infants with average age of gestation of 27 weeks and average weight 2.7 pounds - found that for every increase of 100 adult words per hour a baby heard at 32 weeks, there was a 2-point improvement in language scores. "Children learn from conversations going on around them, but the back and forth communication is the most important," says senior author Dr. Betty Vohr, Alpert Medical School at Brown University. "This just really involves talking to moms and informing them that you have an important role here, and you can make a big difference for your baby."
Neonatal Abstinence Syndrome Symposium
Pennsylvania Premie Network will host a Neonatal Abstinence Syndrome (NAS) Symposium, "Understanding the Care and Management of the Addicted Mother and Baby," March 18 from 9 a.m. to 3 p.m. at two on-site locations -Philadelphia and Harrisburg, PA - in addition to webinar. Attendance is free and lunch will be provided at this event aimed at neonatologists, pediatricians, ob/gyns, nurses and nurse practitioners, NICU staff, newborn nursery staff, early intervention professionals, and agencies serving preterm babies and their families. The symposium includes two morning speakers sessions, followed by an afternoon panel discussion. For more information, contact Dottie Schell, Program Director, Pennsylvania Premie Network,1-888-523-6122 (PA only) or (484) 446-3061.
Increasing Human Milk Consumption in the NICU
Breastfeeding basics for all RNs, human milk donations for all infants under 33 weeks, and becoming a collection site for donated milk are just three best practices that emerged from Medela's new effort highlighting successes in increasing human milk consumption in the NICU. After a nationwide call for submissions for its Human Milk Breast Practices in the NICU, Medela is supporting first place winner Memorial Hospital of Gulfport, Mississippi and runner up Rainbow Babies and Children's Hospital University Hospitals Case Medical Center, Cleveland, Ohio with $10,000 and $5,000 in product awards, respectively. NICUs working to increase human milk consumption around preemies can learn more about these leading strategies.
Information is reported as provided and does not necessarily represent the view of the National Healthy Mothers, Healthy Babies Coalition. A complete copy of HMHB’s disclaimer is available on our website.
In this issue of Preemie Matters: Facebook Chat on Maternal Mental Health & Preemie Moms • PREEMIE Reauthorization Act Becomes Law • Association of Maternal & Child Health Programs (AMCHP) • Preemie Dads' Experiences in the NICU • Preterm Births Decline Among Black Americans • Mark Your Calendar for 2014 Conferences
Facebook Chat on Maternal Mental Health & Preemie Moms
Thanks to all who participated in last month's informative and inspiring Facebook chat on the NPIHC page! The November 14 event on maternal mental health and preemie moms featured speakers Dr. Lisa Osborn, Kasey Mathews, Laura Martin, and Michele Rosenthal, and brought together experts in the field and parents who've had first-hand experiences with trauma, depression, and anxiety after a preterm birth. The successful chat had 94 attendees over the course of the hour, 107 comments, and a 92% active engagement rate among attendees. Missed it? You can access the archived conversation on our website or Facebook chat tab.
PREEMIE Reauthorization Act Becomes Law
President Barack Obama signed S. 252, the PREEMIE Reauthorization Act, into law on November 27, reauthorizing federal research, education, and intervention activities related to preterm birth and infant mortality. The legislation was authored by Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO) and Representatives Ann Eshoo (D-CA) and Leonard Lance (R-NJ). It had broad support from our member organizations including the American Academy of Pediatrics (AAP), American College of Obstetricians and Gynecologists (ACOG), Association of Women's Health, Obstetric, and Neonatal Nurses (AWHONN), Association of Maternal and Child Health Programs (AMCHP), and National Association of Neonatal Nurses (NANN). The original PREEMIE Act brought the first national focus to prematurity prevention, leading to the Surgeon General's Conference on the Prevention of Preterm Birth which generated a public-private agenda for innovative research and support for evidence-based preventive interventions. The PREEMIE Reauthorization Act extends these efforts.
Association of Maternal & Child Health Programs (AMCHP)
The Association of Maternal & Child Health Programs (AMCHP) is a national organization dedicated to disseminating best practices, advocating on members' behalf, providing technical assistance, convening leaders, and advising states to reach a common goal of healthy children, families, and communities. AMCHP's members directly serve women and children nationwide by administering critical public health education and screening services, and coordinating preventive, primary and specialty care. The organization also recognizes leadership in maternal and child health in several ways, including annual awards presented to MCH leaders, honoring excellence in the field. These awards will be presented at AMCHP's upcoming Annual Conference.
Preemie Dads' Experiences in the NICU
A new study published in the Journal of Obstetric, Gynecologic, & Neonatal Nursing (JOGNN) finds that while the fathers of NICU preemies tend to experience strong emotions, they often don't express them outwardly - a discrepancy that can lead healthcare professionals to under-appreciate dads' needs. The research was a focused ethnography collected between 2003-2006 in the neonatal ICU of a large U.K. teaching hospital, collecting data through participant observation, in-depth interviews with dads, and an ethnographic of NICU staff. The findings showed that preemie fathers worked hard at balancing tensions between what they wanted to feel, what they actually felt, and what they perceived others expected their feelings and behaviors to be. The authors say these insights could help NICU professionals improve communication with and support of dads.
Preterm Births Decline Among Black Americans
Good news for maternal and child health: According to a recent CDC report, preterm births among black Americans fell between the years 2006 and 2010. For non-Hispanic black infants, the prematurity rate was 17.1% in 2010 - down from 18.5% in 2006 - as determined by final birth certificate data from the National Vital Statistics System. Despite this progress, disparities remain a challenge. The preterm birth rate for black babies was still approximately 60% higher than for white babies. Nationally, the preterm birth rate was 12%.
Mark Your Calendar for 2014 Conferences
The new year begins with a number of professional, educational, and networking opportunities for professionals and parent leaders in prematurity. Registration is now open for AMCHP's Annual Conference in Washington, DC, January 25-28. Society for Maternal-Fetal Medicine's Annual Conference takes place February 3-8 in New Orleans, and NEO: The Conference for Neonatology will be in Orlando, February 20-23. Let us know what your organization is planning for 2014, so we can share the news via NPIHC's Facebook page and website.
In this issue of Preemie Matters: ACOG & SMFM Redefine 'Term Pregnancy' • EverThrive Illinois • U.S. Preterm Birth Rate Drops to 15-Year Low, But Challenges Remain • Insights on Pros & Cons of Private NICU Rooms
ACOG & SMFM Redefine 'Term Pregnancy'
In a joint Committee Opinion, the American College of Obstetricians and Gynecologists (ACOG) and the Society for Maternal-Fetal Medicine (SMFM) have redefined 'term pregnancy' and the parameters of preterm birth. The new Committee Opinion replaces 'term' with a series of more specific labels: 'early term,' 'full term,' 'late term,' and 'postterm.' The change of definition is intended to prevent early elective deliveries, support high-quality prenatal care, and improve data collection, reporting, and clinical research. Learn more from ACOG.
EverThrive Illinois, formerly the Illinois Maternal and Child Health Coalition (IMCHC), works to improve the health of women, children, and families through community engagement, partnerships, policy analysis, education, and advocacy. EverThrive works with 90+ members in maternal and child health, through various programs including the Illinois Premature Infant Health Network (IPIHN), which brings together physicians, hospitals and community and health organizations to increase quality health care access for premature infants and their families in Illinois. IPIHN recently hosted a legislative dinner on November 6th in partnership with the Illinois Prematurity Caucus, attended by 16 legislators and 35 guests.
U.S. Preterm Birth Rate Drops to 15-Year Low, But Challenges Remain
March of Dimes has released its annual Premature Birth Report Card with the most recent data on prematurity in the United States. The 2012 the U.S. preterm birth rate dropped for the sixth consecutive year to 11.5 percent. This represents a 15-year low. And six states - Alaska, California, Maine, New Hampshire, Oregon, and Vermont - earned an "A," as their preterm birth rates met the 9.6 percent goal. Nineteen states earned a "B," 17 states and the District of Columbia received a "C," five states got a "D," and only three states and Puerto Rico received an "F" on the report card. The nation as a whole again earned a "C." Among the ongoing challenges: The gap between blacks and whites has been slowly narrowing, but the preterm birth rate among non-Hispanic blacks is still more than 1.5 times the rate of non-Hispanic whites.
Insights on Pros & Cons of Private NICU Rooms
In the NICU, maybe not all silence is golden? A study published in The Journal of Pediatrics provides new insight on the pros and cons of private neonatal ICU (NICU) rooms. "Current practice tells us that we should minimize the amount of stimulation to the baby, so you would think that babies in private rooms would do better - but we found the contrary," said the study's first author, Bobbi Pineda, PhD, of Washington University. The observational study used comprehensive neurobehavioral testing and brain imaging with MRI. At discharge, preterm infants in NICU private rooms tended to show abnormalities in the structure of the brain's language area compared to those cared for in open wards. And at age two, those who had been hospitalized in private rooms showed poorer language skills. Even controlling for multiple contributing factors, the association persisted, raising questions about sensory exposure and suggesting the need for more research on optimal NICU environments.
In this issue of Preemie Matters: New Members • Senate Passes PREEMIE Reauthorization Act • Navigating the Journey • Trauma Therapy for Preemie Moms • Centering Healthcare Institue • Transitioning Home From the NICU
U.S. Senate Passes PREEMIE Reauthorization Act
The U.S. Senate passed S. 252, the PREEMIE Reauthorization Act, on September 25. This bipartisan legislation - co-sponsored by Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO) - reauthorizes federal research, education, and intervention activities begun by the original PREEMIE Act, which brought the first-ever national focus to prematurity prevention. The bill now goes to the U.S. House of Representatives.
Navigating the Journey Through Childhood
November 17 in Fairfax, VA, Preemies Today will host a parent and provider conference, "Navigating the Journey Through Childhood," aimed at educating about maternal and child health needs and raising awareness of prematurity. This World Prematurity Day event at the Inova Fair Oaks Physicians Conference Center will include sessions on developmental delays, sensory processing disorders, post-preemie pregnancy, postpartum post-traumatic stress, nutrition, Medicaid waivers, and speech and language tips, among others. Register online at the Preemies Today website.
Trauma Therapy Eases Symptoms for Preemie Moms
A new study published in the journal Pediatrics finds that a short, cost-effective therapy developed to treat military trauma survivors can help ease the emotional distress of preemie moms. The intervention includes six sessions combining elements of the COPE (Creating Opportunities for Parent Empowerment) NICU program with trauma-focused cognitive behavioral therapy techniques. Mothers in this study who received the intervention had a significant reduction of trauma and depression symptoms, and those who initially reported the most stress showed the most benefit. Finding effective, accessible treatment for this population is key: Up to 40% of mothers of preterm infants experience symptoms of post-traumatic stress disorder (PTSD), which can have long-term consequences for both mother and child.
Centering Healthcare Institute
Centering Healthcare Institute's mission is to improve maternal-child health by transforming care through Centering groups -- a model of group health care. In this model, health assessment, education, and support are provided to group members by a care provider, changing the way women experience their care. The model, piloted by nurse-midwife Sharon Schindler Rising in the the early 1990s, led to the beginning of professional training workshops in 1998. Its redesign of healthcare delivery helps to promote safety, effectiveness, culturally-appropriate patient-centered care, and more equitable care, among other benefits. Centering Healthcare Institute's Fourth National Conference takes place October 26-29 in Washington, DC, bringing together clinicians, researchers, policy makers, administrators, and students to discuss ideas for transforming healthcare delivery.
Premature & High-Risk Infants: Transitioning Home from the NICU
Register online now for Premature and High-Risk Infants: Transitioning Home from the NICU, scheduled for November 1 in Denver, CO. Sponsored by Special Kids-Special Care of Denver, the conference provides a forum for healthcare professionals to share their expertise in the care of premature and high-risk infants and their families as these babies transition home from the hospital. The goal is to optimize health and developmental outcomes, and to support families by sharing best practices, clinical guidelines, and current research with the healthcare professionals and agency staff who care for them.
In this issue of Preemie Matters: New Member • August Webinar Recap • Neonatal Nurses Day • Papas of Preemies • Home Visiting Programs for Preemies • NPA Annual Conference
Join us in welcoming the Coalition's newest member: Academy of Neonatal Nursing. Learn more about National Premature Infant Health Coalition membership and complete the online application on our website.
August Webinar Recap
Thanks to all who joined our August webinar on an important new resource for the field, the Multidisciplinary Guidelines for the Care of Late Preterm Infants, with presenter Raylene Phillips, MD, IBCLC, FAAP. And special thanks to participants who responded to our post-webinar survey. Among the results: 73% gave the webinar an overall rating of "excellent" and 94% say they would take part in a future NPIHC webinar. Participants came from hospitals/healthcare (40%), nonprofit/government (43%), and industry/corporations (16%). Missed the webinar or would like to share it with a colleague? Find the archived slides and audio on our website.
September 15 is Neonatal Nurses Day
National Neonatal Nurses Day - Sunday, September 15th - was established in 2000 by the National Association of Neonatal Nurses (NANN) as an opportunity for the neonatal community to honor nurse colleagues and show pride in the profession of neonatal nursing. This year NANN is encouraging all neonatal nurses and their units to embrace the theme "Love What You Do," sharing ideas for marking the occasion. Because we at NPIHC love what neonatal nurses do, we invite both parents and professionals to join us on September 15th on the NPIHC Facebook page, where we will honor and thank neonatal nurses across the country. With a post to our Facebook wall or a comment on our messages, please tell us about a neonatal nurse who has made a difference for YOU, sharing your stories and photos. .
Papas of Preemies
Joel Brens is on a mission to give a voice to the father's perspective of prematurity and the NICU. Following the preterm birth of his son Jayden in 2010, Brens founded Papas of Preemies as a support community run by parents, for parents. Through the Papas of Preemies website, blog, and Facebook page, a growing lineup of contributor dads share personal insights, experiences, information, and resources. In October, Brens will be one of four Preemie Parent Alliance members speaking about his NICU experience for an audience of professionals at the National Association of Neonatal Nurses (NANN) Annual Educational Conference in Nashville.
Home Visiting Programs Effective for Preemies & Their Parents
A research review published in Pediatrics finds that home visits by nurses or other trained health professionals can improve the development of preterm infants and effectively support parents and the home environment. The first of its kind in 20 years, this review looked at 17 studies including a total of 2,983 babies, measuring outcomes in five categories. Currently 400 home visiting programs of this kind serve at least 500,000 U.S. families, largely funded by state and local governments. The Patient Protection and Affordable Care Act (also known as Obamacare) designates funding for home visiting programs aimed at improving outcomes for at-risk preemies and their mothers, which may expand their reach. This review's research team calls for additional studies to investigate how home visiting programs can best meet the needs of special populations, including low-income and late-preterm preemies and their families.
NPA's 34th Annual Conference
Registration is open for the National Perinatal Association's 34th Annual Conference, set for November 7-9 in Salt Lake City. With the theme "Families at the Center: New Dimensions in Perinatal Care," the event brings together healthcare professionals and parents - including representatives from NPIHC member organizations - for a unique learning and networking opportunity. Sessions in this year's lineup cover topics including psychological services in the NICU, the impact of reproductive technologies, NICU environment of care, breast milk for preemies, prematurity's impact on the education system, preemie nutrition and bone density, music for parent and infant stress reduction, and more. Find complete details at NPA's conference brochure and registration flyer.
In this issue of Preemie Matters Breastfeeding: The Importance of Preparing Mothers of Preemies Prior to Discharge • Multidisciplinary Guidelines for the Care of Late Preterm Infants • Tiny Miracles Foundation • Preemie Parent Alliance Summit:October 4-6 in Nashville • Internship with NPIHC
Breastfeeding: The Importance of Preparing Mothers of Preemies Prior to Discharge
Our newest post on the NPIHC site comes from Maureen Doolan Boyle, Mothers of Supertwins (MOST), spotlighting the importance of breast milk for preemie health and how we can support moms of preterm babies. Breastfeeding: The Importance of Preparing Mothers of Preemies Prior to Discharge shares both personal and clinical perspectives, as well as links to helpful resources.
Multidisciplinary Guidelines for the Care of Late Preterm Infants
Our August 8 webinar spotlighted the "Multidisciplinary Guidelines for the Care of Late Preterm Infants," an evidence-based approach to providing safe and supportive care for this vulnerable group. Presenter Raylene Phillips, MD, IBCLC, FAAP, reviewed this new resource and described how its use will lead to improved outcomes for late preterm infants by providing guidance, education, and support for families and the healthcare providers who care for them. Make sure to share these slides and audio, now accessible online as a resource for parents and other advocates, professionals in the field of infant health, and physicians and clinicians providing care to premature infants and their families.
Tiny Miracles Foundation
The Tiny Miracles Foundation is dedicated to helping families of premature infants in the Fairfield County, Connecticut area. This parent-founded organization provides support, information, services, and supplies to families during and immediately after their hospital stay, addressing the myriad family needs that extend beyond the medical care of fragile babies. Their programs include Family Resource Rooms, NICU parent mentors, "Blankets for Preemies," welcome and homecare supplies, and financial assistance. Beyond the NICU, they offer parent mentoring, a resource directory, bereavement support, and bilingual support services. They also host web-based resources and an online community with discussion groups and a weekly chat. On September 29th, the Tiny Miracles Foundation will host their Wild Family Event at the Beardsley Zoo in Bridgeport.
Preemie Parent Alliance Summit: October 4-6 in Nashville
Registration is open for the annual Preemie Parent Alliance Summit, the only weekend-long event of its kind bringing preemie parent leaders together to network, collaborate, and share best practices - toward the goal of supporting families who have been affected by preterm birth. Set for October 4-6 in Nashville, PPA's summit also welcomes clinicians and other professionals from the prematurity field, and will feature a lineup of speakers including PTSD expert and trauma survivor Michele Rosenthal, organizational development consultant Vicki Clark, and media training experts Michele Rosenthal, Julie Howard, and Lori Aston. A discounted hotel room block is available until September 13th.
Internship with NPIHC
Do you know an outstanding student in the Washington, DC area? NPIHC is seeking an intern to support the program in the National Healthy Mothers, Healthy Babies Coalition's Alexandria, VA office. The position will report to NPIHC's program manager. Interested candidates should email their resume and cover letter to firstname.lastname@example.org.
In this issue of Preemie Matters: August 8th Webinar: Multidisciplinary Guidelines for the Care of Late Preterm Infants • Video Educates About Risks of Elective Preterm Delivery • Mothers' Milk Bank at Austin • PreemiePalooza in North Carolina • Prone Sleep Increases Preemie SIDS Risk
August 8th Webinar: Multidisciplinary Guidelines for the Care of Late Preterm Infants
Mark your calendar and register now for NPIHC's next webinar, set for August 8 at 2 p.m. EDT. Late preterm infants are often treated as "slightly small, almost term babies," yet babies born at 34 0/7 - 36 6/7 weeks gestation have significantly higher morbidity and mortality rates due to their significant, if not always obvious, immaturity. The "Multidisciplinary Guidelines for the Care of Late Preterm Infants" is an evidence-based approach to providing safe and supportive care for this vulnerable group. Join presenter Raylene Phillips, MD, IBCLC, FAAP, who will review this new resource and describe how its use will lead to improved outcomes for late preterm infants by providing guidance, education, and support for families and the healthcare providers who care for them. The session is appropriate for parents and other advocates, professionals in the field of infant health, and physicians and clinicians providing care to premature infants and their families.
Video Educates About Risks of Elective Preterm Delivery
A new video from the National Child & Maternal Health Program at NIH's National Institute of Child Health & Human Development (NICHD) aims to prevent non-medically indicated preterm induction of labor. The "Is It Worth It?" video, part of an educational initiative to reduce elective deliveries before 39 weeks of pregnancy, features NPIHC friends including blogger-advocate Heather Spohr and the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN). The initiative's first phase focused on educating healthcare professionals via a CME course for nurses and doctors, sharing the latest research and best practices. Complementing the course, the "Is It Worth It?" video - available in varying formats - discusses maternal and child health risks posed by delivery prior to 39 weeks, barring medical indications. The videos are being shared online and are playing in healthcare providers' offices across the U.S.
Mothers' Milk Bank at Austin
The Mothers' Milk Bank at Austin is a nonprofit organization whose mission is to accept, pasteurize, and dispense donor human milk by physician prescription, primarily to premature and ill infants. Founded in 1998 by two Austin, TX neonatologists, the Mothers' Milk Bank at Austin is the second-largest milk bank in the U.S. and a leading member of the Human Milk Banking Association of North America (HMBANA). Currently the Mothers' Milk Bank at Austin serves 100 hospitals in 21 states, processing 8,000 ounces of milk every week and serving thousands of preterm babies annually.
PreemiePalooza in North Carolina
August 3, 2014 from 5 to 9 p.m., NPIHC member Zoe Rose Memorial Foundation will host its first annual PreemiePalooza at Windy Meadows Farm in Graham, NC. This family festival "celebrating music, food, and preemies" will bring together a lineup of musical guests for an al fresco evening of fun. Your participation helps the Zoe Rose Memorial Foundation's goal of raising $5,000 to support preemie families. For more information, contact Keira Sorrells at email@example.com.
Prone Sleep Increases Preemie SIDS Risk
A new study published as an abstract in the journal Sleep shares preliminary data suggesting that preterm infants who sleep in the prone position may be at heightened risk for sudden infant death syndrome (SIDS), due to decreased cerebral oxygenation. The Australian research team notes an overall 9.6% increased SIDS risk among preterm infants, possibly associated with cardiovascular instability and failure of arousal from periods of sleep. Preemie infants may also have lower blood pressure, abnormal blood pressure control, higher heart rate, and reduced heart rate control, contributing to SIDS risks. The prone sleeping position, on the stomach, is already known to be associated with reduced blood pressure and cerebral oxygenation in full-term babies, which increases risk for SIDS.
Information is reported as provided and does not necessarily represent the view of the National Healthy Mothers, Healthy Babies Coalition. A complete copy of HMHB's disclaimer is available on our website.
In this issue of Preemie Matters: New Members • NPIHC Webinar: Multidisciplinary Guidelines for the Care of Late Preterm Infants • Critical Shortages Affecting NICU Infants • National Association of Neonatal Nurses (NANN) • Preemie Parent Alliance Summit • Breast Milk Use in NICUs Remains Too Low
Join us in welcoming the Coalition's newest members: National Association of Neonatal Nurses • National Association of County and City Health Officials • Pennsylvania Premie Network • The Tiny Miracles Foundation • Parent Connection • Texas Parent to Parent • Mothers' Milk Bank at Austin Learn more about National Premature Infant Health Coalition membership and complete the online application on our website.
NPIHC Webinar: Multidisciplinary Guidelines for the Care of Late Preterm Infants
Mark your calendar and register now for our next webinar, set for August 8 at 2 p.m. EDT. Late preterm infants are often treated as "slightly small, almost term babies," yet babies born at 34 0/7 - 36 6/7 weeks gestation have significantly higher morbidity and mortality rates due to their significant, if not always obvious, immaturity. The "Multidisciplinary Guidelines for the Care of Late Preterm Infants" is an evidence-based approach to providing safe and supportive care for this vulnerable group. Join presenter Raylene Phillips, MD, IBCLC, FAAP, who will review this new resource and describe how its use will lead to improved outcomes for late preterm infants by providing guidance, education, and support for families and the healthcare providers who care for them. The session is appropriate for parents and other advocates, professionals in the field of infant health, and physicians and clinicians providing care to premature infants and their families.
Critical Shortages Affecting NICU Infants
Have you seen our new blog post from Dr. Mitch Goldstein on the nation's drug shortage crisis affecting fragile infants? Recent media coverage has put a spotlight on widespread shortages of critical medications and nutrients affecting hospitalized preemies and other patients. A May 22nd story in the Washingtonian reported "rationing, hoarding, and bartering of critical nutrients" in Washington, DC facilities, and "doctors reporting conditions normally seen only in developing countries." In late March, NBC News reported on the national scarcity of injectable zinc, "in such short supply that at least seven extremely premature infants in the U.S. developed horrifying skin lesions and life-threatening reactions after their hospitals ran out." CDC began its coverage of these shortages in the February 22, 2013 edition of their Morbidity and Mortality Weekly Report (MMWR). And as with this new blog post from Texas Children's Hospital, individual facilities and providers continue to report on how shortages are affecting them, through outlets like social media, making the case that the problem will not "self-correct" and that federal legislation has not yet moved forward to address it. In one possible - though limited and temporary - step forward, USA Today reported that U.S. health regulators are allowing overseas imports of one critical IV drug formula used to nourish preemies. The U.S. Food and Drug Administration (FDA) says new supplies of the drug total parenteral nutrition, are being made available to U.S. patients through this arrangement, as a temporary measure to ease shortages triggered by the shutdown of the drug's primary U.S. manufacturer. Watch our Facebook page and Twitter #NPIHC as we continue to follow these shortages and the measures addressing them.
National Association of Neonatal Nurses (NANN)
NANN, the National Association of Neonatal Nurses, is the longest established professional voice supporting neonatal nurses through excellence in practice, education, research, and professional development. NANN was founded in 1984 in California by five neonatal nurses. NANN celebrated the first Neonatal Nurses Day in 2000, and in 2001 introduced their journal, Advances in Neonatal Care. More recently, in 2011, they launched MyNANN, a private online social network for members, and released the second edition of Policies, Procedures, and Competences for Neonatal Nursing Care. NANN's 29th Annual Educational Conference takes place this fall in Nashville, TN. Connect with NANN and get their latest news on Facebook and Twitter.
Preemie Parent Alliance Summit: October 4-6, 2013
Registration is open for the Third Annual Preemie Parent Alliance Summit, set for October 4-6, 2013 in Nashville, TN. Join preemie parent leaders and professionals for a learning and networking opportunity aimed at working together to support the families of premature infants. Among the event's notable speakers is PTSD expert Michele Rosenthal with a keynote, "Reclaiming Life Beyond the NICU: Redefining Who You Are and How You Live." Learn more about the work of the Preemie Parent Alliance at the PPA website.
Breast Milk Use in NICUs Remains Too Low
A new study published in Pediatrics finds that the use of breast milk in advanced-care NICUs is increasing, but remains too low. Using CDC data, the research team found that only about one-third of NICUs routinely provide human milk, whether from a baby's mother or donated -- suggesting that many medically-fragile babies are not receiving optimal protection from infections and other morbidities. The American Academy of Pediatrics (AAP) recommends that all preterm infants receive human milk. "Hospitals... can further support the care of medically fragile infants by adopting policies and practices to support mothers in being able to provide their breast milk to their infants," the authors write.
In this issue of Preemie Matters: Virtual Summit Recap • Families Blossoming • Neurodevelopmental Outcomes Often Good for Extreme Preemies Receiving Active Care • An Inside Look at Life as a NICU Graduate • NICU Heroes Award
Virtual Summit Recap
Thanks to our presenters and participants who made the Coalition's 2013 Virtual Summit a success! We kicked off the week's events with a team at the Washington, DC March of Dimes March for Babies, followed by a networking reception with a keynote from Dr. Mitchell Goldstein and the debut of our new video. As we surpassed our 1,000th Facebook follower, we also hosted our first live Facebook chat, "How Providers Can Empower Parents," with guests Dr. Sue Hall, Keira Sorrells of Preemie Parent Alliance, and Laura Martin of Graham's Foundation. Strong participation from preemie parents made this a particularly successful feature of the Virtual Summit! If you missed it, visit the "Replay Live Chat" tab on our Facebook page. The Virtual Summit also included two webinars, "Collaborating with Legislators to Advocate for Prematurity" with Janine Lewis of the Illinois Maternal & Child Health Coalition and Rep. Robyn Gabel (D), Illinois - 18th District, and "Enhancing Safety and Outcomes with Evidence-Based Practices" with Dr. Alan Spitzer of Pediatrix, both now archived on our website. Stay tuned for info on future webinars and Facebook chats, as we continue the momentum from the Summit.
Families Blossoming provides coaching-based emotional support and resources for the parents of children born preterm and those with special needs, specializing in the post-NICU or post-diagnosis period. An independent business founded by preemie and special-needs mom Gigi Khonyongwa-Fernandez, Families Blossoming draws on the expertise from Gigi's experiences as a parent and advocate for her own child, as well as her professional background as an occupational therapist and healthcare project manager. In addition to coaching services, Families Blossoming also supports parents with a blog, a monthly e-newsletter, a Facebook page, and a forthcoming book, From Roller Coasters to Carousels: An Interactive Guide To Regaining and Maintaining A Sense of Calmness for the Preemie and Special Needs Parent.
Neurodevelopmental Outcomes Often Good for Extreme Preemies Receiving Active Care
A study published in the May 1 issue of the Journal of the American Medical Association (JAMA) looks at neurodevelopmental outcomes for extreme preemies, and the news is encouraging. The Swedish research team found that about three-quarters of infants born extremely prematurely and who received active care had mild or no neurodevelopmental disability at age 2.5 -- and that neurodevelopmental outcomes improved with each week of gestational age. They compared outcomes for 491 infants born before 27 weeks of gestation between 2004 and 2007, matching to singleton control infants. Lead researcher Dr. Frederik Sernius of Uppsala University says the results are potentially helpful for clinicians counseling families facing extremely preterm birth.
An Inside Look at Life as a NICU Graduate
A June 7 webinar, "Life Goes On: An Inside Look at Life as a NICU Graduate,", with Anne DeBattista, RN, MS, CPNP/CPMHS, PhD (c), will detail the latest statistics on the long-term consequences of prematurity and newborn illness, the programs delivering services to infants in hopes of minimizing long-term difficulties, and her perspective on the current state of early intervention services in the United States. The Dandle-LION hosted session will support NICU staff in understanding what lies ahead for preemies and their parents post-discharge, empowering them to give realistic guidance to parents before discharge, knowing that parental commitment and involvement has a huge impact on long-term outcomes. Nursing CE credits are available.
NICU Heroes Award
The NICU Heroes Award program- sponsored by Hand to Hold- recognizes NICU professionals for their compassion and dedication to improving outcomes for medically-fragile babies and their families. Parents and guardians of children who have been admitted to a neonatal intensive care unit are invited to nominate a favorite NICU Hero for this honor by May 27, 2013. Terms and conditions for the award program are available on the Hand to Hold website.
In this issue of Preemie Matters: New Members • NPIHC Virtual Summit • Assessment & Care of the Late Preterm Infant Implementation Toolkit • Jewish Family & Children's Service - Center for Early Relationship Support • FAST FACTS from HMHB: What You Should Know About Short Cervix & Preterm Birth • USLCA Conference to Feature Preemie Sessions
Join us in welcoming the Coalition's newest members:
- Anne Arundel County Health Department
- Families Blossoming
- North Carolina Healthy Start Foundation
- Wood County Health Department
Learn more about National Premature Infant Health Coalition membership and complete the online application on our website.
Join Us! NPIHC Virtual Summit
There is no cost to participate in any of the 2013 Summit events, and all are open to parents, providers, policymakers, and anyone with an interest in issues of prematurity.
Join us for the 2013 NPIHC Networking Reception and mark your calendar to participate in the following educational sessions online:
- "How Providers Can Empower Parents" with Sue Hall, M.D., Stormont-Vail HealthCare; Keira Sorrells, Preemie Parent Alliance; and Laura Martin, Graham's Foundation. Wednesday, May 8 at 11:00 a.m. Eastern. To participate, join the conversation on the NPIHC Facebook page.
- "Collaborating with Legislators to Advocate for Prematurity" with Janine Lewis, Illinois Maternal & Child Health Coalition and Representative Robyn Gabel (D), Illinois - 18th District. Thursday, May 9 at 3:00 p.m. Eastern. Register here!
- "Enhancing Safety and Outcomes with Evidence-Based Practices" with Dr. Alan Spitzer, Pediatrix. Friday, May 10 at 11:00 a.m. Eastern. Register here!
Also join the NPIHC team in the Washington, DC March for Babies on Saturday, May 4 at 9:00 a.m. For more information about Summit activities, visit our website and follow us on Facebook.
Assessment & Care of the Late Preterm Infant Implementation Toolkit
A new online resource from the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN), the Assessment and Care of the Late Preterm Infant Implementation Toolkit, aims to improve patient outcomes and reduce risks associated with being born at late preterm and early term, while also saving time and reducing costs. The toolkit provides ready-to-use, customizable tools and strategies for assessing risks, providing appropriate evidence-based care, and tracking outcomes for late preterm and early term infants in healthcare facilities and healthcare systems. It's is designed to support and build on the information presented in AWHONN's Assessment and Care of the Late Preterm Infant Evidence-based Clinical Practice Guideline.
Jewish Family & Children's Service - Center for Early Relationship Support
The Jewish Family and Children's Service - Center for Early Relationship Support serves Greater Boston, MA with direct services, training, supervision, and consultation that focus on the earliest infant-parent relationship. Through hospital and home visits and a monthly support group, the Center's Fragile Beginnings program supports parents of preterm infants, helping to bridge the transition from hospital to home and to support the special challenges of preemie parenting. In addition, the Fragile Beginnings Preemie Parent Alliance, a parent/professional partnership serving New England, helps families and providers access resources in their communities, stay updated on preemie policy issues, and connect around their stories and perspectives. Among the Center's other important programs are Early Connections, a therapeutic service for new parents experiencing emotional difficulties; a feeding support program; an Infant-Parent Training Institute; support for young parents under age 21; and the Visiting Moms program for pregnant women and new mothers.
FAST FACTS from HMHB: What You Should Know About Short Cervix & Preterm Birth
A new resource for maternal-child health paraprofessionals and women who are pregnant or planning a pregnancy educates about cervical length, its relationship to premature labor and birth, and implications for the prenatal care of women with at-risk medical histories. The National Healthy Mothers, Healthy Babies Coalition's Fast Facts: What You Should Know About Short Cervix & Preterm Birth is available on the HMHB website for online viewing and easy download in PDF format. It is an educational companion piece to HMHB's recent guest blog on this issue from Betty Jordan, DNSc, RNC at the Johns Hopkins School of Nursing.
USLCA Conference to Feature Preemie Sessions
The United States Lactation Consultant Association's (USLCA) first National Conference, set for May 3-5, 2013 in St. Louis, Missouri, will feature four sessions specific to breastfeeding concerns for preterm infants and their mothers. Sessions include "Premature Babies: Strategies to Increase Intake of Human Milk," "Breastfeeding the Late Preterm Infant," "Creating a Culture of Breastfeeding in the NICU," and "Steps to Success in Breastfeeding the Preterm Infant." The USLCA conference draws an audience of practicing lactation consultants, those in training, perinatal healthcare providers, and breastfeeding advocates. Learn more and register at the USLCA website.
In this issue of Preemie Matters: NICU Resource Library • Parents of Preemies Day 2013 • Strong Start for Mothers & Newborns • Skyler's Gift Foundation • Integrating "Back to Sleep" Recommendations Into NICU Practice
NICU Resource Library
Nonprofit preemie parent support organization Hand to Hold has launched an online NICU Resource Library for hospitals, offering educational info and support to families who have a baby in the neonatal ICU. The library- which includes resources in both English and Spanish for co-branding by hospitals and print-on-demand- is available to NICUs for an annual membership fee. This resource to support family-centered care may also be gifted by individuals or corporations through Hand to Hold's "For the Love of Babies" campaign.
Parents of Preemies Day 2013
March 10th marked the second annual Parents of Preemies Day, and event coordinators report a strong turnout and exciting growth across the U.S. as well as internationally. This year, more than 400 adults and 300 children attended events in six cities, and many more parents and supporters were present at 10 NICU-only events - including the first ever Parents of Preemies Day event in Indonesia. Online, thousands of preemie parents shared their stories and photos on the Parents of Preemies Day Facebook page, and #ParentsofPreemiesDay was a trending topic during an official Twitter chat. The National Premature Infant Health Coalition supported Parents of Preemies Day through social media and with a blog post in collaboration with the National Healthy Mothers, Healthy Babies Coalition (HMHB). Planning for 2014 is already underway at Graham's Foundation, which produces this annual observance.
Strong Start for Mothers & Newborns
In February, the U.S. Department of Health and Human Services (HHS) unveiled a new initiative, Strong Start for Mothers and Newborns, aimed at lowering prematurity rates under Medicaid and CHIP. Through grant funding, communities with high rates of preterm births will receive support for improving prenatal care. Awards are expected to serve 80,000 women in 32 states, the District of Columbia, and Puerto Rico.
Skyler's Gift Foundation
Following the birth of their twin sons Stephen and Skyler at 24 weeks, and the subsequent loss of Skyler in the neonatal ICU, preemie parents Tiffany and Stephen Bowen started Skyler's Gift Foundation in 2012 with the belief that no one should have to face this kind of loss alone, without needed resources. Along with funding prevention research and education, Skyler's Gift Foundation supports families in need of financial assistance for mortuary and burial costs, as well as grief counseling and support groups for moms, dads, and siblings. On the evening of May 4th in Washington, DC, the Foundation will host its first major fundraiser, a Bowl-a-Thon at Lucky Strike featuring Stephen Bowen and other NFL players, including several of Stephen's teammates from the Washington Redskins. Get complete details and buy tickets on the Skyler's Gift website.
Integrating "Back to Sleep" Recommendations Into NICU Practice
The American Academy of Pediatrics (AAP) recommends that NICUs endorse and model safe sleep, SIDS risk-reduction practices with parents before a baby's discharge. New research published in the journal Pediatrics finds that a program which includes detailing when to start safe start sleep practices, a "Back to Sleep" crib card, educational programs for nurses and parents, a crib audit tool, and post-discharge telephone reminders may lead to significantly improved outcomes. After implementation of the study's program, NICU "back to sleep" compliance increased from 39% to 83%, and parental compliance with safe sleep practices at home increased from 23% to 82%.