“Lighting the way, building community, empowering the NICU/Preterm Birth traveler”

What’s happening locally……………………

CHEERS! WEST COAST WE ARE RIPPING!!

NIFTY CUP!

Designed in Seattle, this $1 cup could save millions of babies….

The Seattle Times – Originally published May 23, 2016 at 1:54 pm Updated June 15, 2016

Inventors from PATH, the University of Washington and Seattle Children’s designed a feeding cup that could help prevent starvation in premature and high-risk babies in developing countries who have trouble breast-feeding. It will soon be widely distributed in Africa.-SOURCE- http://www.seattletimes.com/seattle-news/health/designed-in-seattle-this-1-tool-could-save-millions-of-babies/

IN-PROCESS:

Seattle Children’s Research Institute Secures $3 million for Seattle-PAP Infant Breathing Support Invention

“April 30, 2014 – Seattle – Today,　Seattle Children’s Research Institute　announced the receipt of a three year, $3 million dollar grant from the Bill Melinda Gates Foundation　to conduct two clinical trials of Seattle-PAP, an affordable device intended to provide breathing support to premature infants. The trials will begin later this spring in the neonatal intensive care unit (NICU) at Texas Children’s Hospital, the largest NICU in the U.S., and will confirm whether Seattle-PAP fosters similar or better outcomes than other infant breathing devices, as preclinical research suggests. If results are favorable, Seattle-PAP, which was developed in-house at Seattle Children’s Research Institute, is expected to be commercially available to healthcare providers around the world by 2017.

Developed by a team co-led by Seattle Children’s CEO　Tom Hansen, MD and Charles (Skip) Smith, PhD, Seattle-PAP is significantly cheaper to produce, operate, maintain, and repair than ventilators and other respiratory support devices typically used in U.S. healthcare facilities. These features make Seattle-PAP ideal for use in areas where access to healthcare resources may be limited. To operate the device, only relatively simple supplies are needed, including water, a continuous air supply, a breathing circuit tube, and a tube for the nose.”

“Worldwide, almost 1 million infants die each year from respiratory distress. Most of these deaths occur in resource-limited countries due to a lack of access to respiratory support devices commonly used in the developed world,” said Thomas Hansen, MD, CEO at Seattle Children’s. “Seattle-PAP may be a solution to this problem by making effective respiratory support accessible to newborns anywhere in the world.”

Please see the full article: http://www.texaschildrens.org/about-us/news/releases/seattle-childrens-research-institute-secures-3-million-seattle-pap-infant

Warriors!

We will be exploring TRAUMA as we view our Neonatal Womb Community at home and abroad….

What is Trauma?

1. A deeply distressing or disturbing experience:
   • emotional shock following a stressful event or a physical injury, which may be associated with physical shock and sometimes leads to long-term neurosis.
2. Physical injury.

KAT-Currently I am working at Harborview Medical Center in Seattle, WA. as an office assistant in the Surgical Residency Department. Seeking a long-term career in surgery it is my pleasure to work alongside and learn from the amazing community members at Harborview Medical Center. At the trauma center of Harborview the sounds of sirens, helicopters, alarms, and codes are a familiar never-ending tune to an even greater symphony of staff and community members that orchestrate themselves on a daily basis to provide care to those whose lives change within an instant.

To me, trauma begins in an instant, often without warning as it deconstructs our reality and shakes us into a new world.

If you have been in the Neonatal ICU or received emergency preterm birth care trauma may be a part of your life story.

As a Neonatal ICU patient the majority of my care was focused on the trauma my tiny body endured each day as I fought, like many of my fellow preemie brothers and sisters, to live. I recognize my unanticipated birth and the loss of my twin brother Cruz was a horrific emotional shock to my family. In a past blog I shared that I received open heart surgery with no anesthia as a neonate. Though my body experienced harsh physical trauma I feel that the surgery may have been equally distressing to my surgeon, surgical and neonatal teams, and my family.

As members of the Neonatal Womb Family we have all have a relationship with trauma. We know what it means to will ourselves forward. I believe it is important for us as a community to acknowledge the trauma we have ALL encountered. Let us extend our deepest empathy and love to the families currently finding themselves in the traumatic experience of having a premature infant and the health-care providers that work within the environment of preterm birth associated trauma each day.

To my fellow NICU Grads/Premature Birth Survivors we have an important voice and role! We are valuable resources to our community! WE ARE SYMBOLS OF HOPE!

“Lighting the way, building community, empowering the NICU/Preterm Birth traveler”-The Neonatal Womb Foundation

_{Salsa, rumba and mambo… Gloria Estefan… plantains …white-sand beaches, rolling mountains …cigars and rum…}

Recently, we shared the March of Dimes preterm birth report card for the USA, and Global Preterm Birth standings per WHO. We queried what can we learn from other nations that would move the USA from a C grade to an A grade? Globally, resources to empower positive changes domestically and abroad are present, accessible and evolving! As our doors open to Cuba; we open our eyes to the wealth of wisdom, experience, and medical resources Cuba presents to the Neonatal Womb Community globally and locally.

Low Birth Weight Outcomes: Why Better in Cuba Than Alabama?

Yasmin Neggers, DrPH, RD and Kristi Crowe, PhD, RD, LD – Journal of the American Board of Family Medicine – March-April 2013       http://www.jabfm.org/content/26/2/187.full

Doctors  Neggers and Crowe report that low birth weight (LBW; <2500 g) is the single most important factor affecting neonatal mortality and a significant determinant of post neonatal mortality. They indicate that LBW babies are at an increased risk for serious health problems, ranging from neurodevelopmental disabilities such as cerebral palsy and mental retardation to respiratory disorders. They note that in the United States, 65% of all infant deaths result from LBW and preterm birth. The authors report numerous factors associated with LBW including maternal age, race, weight before pregnancy, weight gain during pregnancy, prenatal care, and use of tobacco and alcohol products. In addition, socioeconomic conditions, nutrition during pregnancy, and anemia are key factors that have been proven to influence the prevalence of LBW. The article states “The percentage of LBW in Cuba is not only much lower than its neighboring developing countries such as Jamaica, Haiti, and the Dominican Republic, but is also lower than far more affluent countries such as England and the United States. Despite a per capita gross domestic product that places Cuba in the fourth quintile of nations, Cuba’s infant mortality rate rivals that of Canada and is lower than the average infant mortality rate in the United States and, in particular, the state of Alabama”. According to World Bank data, 100% of pregnant Cuban women receive prenatal care, defined as medical and nursing care recommended for women before and during pregnancy. In Cuba, implementation of universal health care with a strong focus on community-based services for prenatal care has significantly reduced the prevalence of LBW over the past 20 years. The article outlines several examples for implementing community-based prenatal care in the United States that were considered for adaptation on pilot scales in Alabama and North Carolina (USA).

* Most, but not all, LBW infants are born preterm. We encourage you to read the full informative and detailed article! –Source: Cuba’s Health Care System: a Model for the World – The Huffington Post 08/08/2014 http://www.huffingtonpost.com/salim-lamrani/cubas-health-care-system-_b_5649968.html

According to the UN’s World Health Organization, Cuba’s health care system is an example for all countries of the world.

“The Cuban health system is recognized worldwide for its excellence and its efficiency. Despite extremely limited resources and the dramatic impact caused by the economic sanctions imposed by the United States for more than half a century, Cuba has managed to guarantee access to care for all segments of the population and obtain results similar to those of the most developed nations. During her recent visit to Havana in July of 2014, Margaret Chan, Director-General of the World Health Organization (WHO), impressed by the country’s achievements in this field, praised the Cuban health care system: ““Cuba is the only country that has a health care system closely linked to research and development. This is the way to go, because human health can only improve through innovation.”” She also praised ““the efforts of the country’s leadership for having made health an essential pillar of development””. Cuba’s health care system is based on preventive medicine and the results achieved are outstanding. According to Margaret Chan, the world should follow the example of the island in this arena and replace the curative model, inefficient and more expensive, with a prevention-based system. ““We sincerely hope that all of the world’s inhabitants will have access to quality medical services, as they do in Cuba,” she said””.

The article concludes with the following statement: “In praising Cuba, the World Health Organization stresses that it is possible for Third-world countries with limited resources to implement an efficient health care system and provide all segments of the population with social protection worthy of the name. This is possible if the political will exists to put human beings at the center of the project”.

In our “Healers” blog we touched upon the fact (WHO November, 2013) that globally there was a deficit of 7.2 million skilled health professionals, and the deficit is increasing…And the Largest Medical School in the World is in?

 CUBA

Havana, Cuba: Latin American Medical School (ELAM) -“Supporting the world’s largest medical school in the education of socially committed physicians.”

“I know of no other medical school with an admissions policy that gives first priority to candidates who come from poor communities and know, first-hand, what it means to live without access to essential medical care. For once, if you are poor, female, or from an indigenous population, you have a distinct advantage”.   ~WHO Director-General Dr. Margaret Chan, visiting ELAM. Dr. Chan states “Cuba has the lowest infant mortality rate in the hemisphere: a child born in the eastern mountains of Cuba has a better chance of survival than a newborn in Washington DC. ” –Source-http://medicc.org/ns/?page_id=63

The Cuban success in decreasing LB weight infants is worthy of our attention. As we investigated Cuba’s health care system we stumbled upon this comprehensive experience based and awakening Ted Talk by journalist Gail Reed: Where to train the world’s doctors?

Journalist Reed discusses how the world’s largest medical school (Havana Latin American Medical School/ELAM) provides:

• – community based learning
• – teaches students to treat the whole patient
• – promotes the concept that a good patient interview and a thorough clinical exam provide most of the clues  for diagnoses saving costly technology for confirmation, importance of prevention
• – a team approach to teaching, learning, working to support their mission In order to train physicians “for people that need them the most; the over 1 Billion who have never seen a doctor”.
  

WARRIORS!

Did you know that surfing in Cuba was illegal for many years? This nostalgic and dynamic YouTube adventure takes us on a short and beautiful journey into Cuba!

The narrator tells us “I believe surfing makes me a better person, challenges me and makes me feel connected to my body and to the ocean in ways that transcend simply being in the water and riding waves.”

-Published on Jun 11, 2013 Ola Libre – A Waterlust film about surfing in Cuba. A film by Mike Gibbons & Patrick Rynne aimed at exploring and supporting the emerging surf culture of Cuba.

How do you choose to be challenged, and what connects you to your body, to nature and our oneness on this life journey?

   MAHALO

WARRIORS:

In the spirit of acknowledging our own development The Neonatal Womb Foundation will “tweek” our Foundation affirmation statement from “Lighting the way, building community, empowering the NICU traveler” to an expanded affirmation of “Lighting the way, building community, empowering the NICU/Preterm Birth traveler” in order to represent our intent to bring light, empowerment and connection into the World of the preterm birth collective.

Today, we want to share a very brief overview of the preterm birth status of our global and national community through the “eyes” of some of well-known preterm birth resources.

WHO? …….

The World Health Organization (WHO) is a specialized agency of the United Nations that is concerned with international public health. It was established on 7 April 1948, headquartered in Geneva, Switzerland.

WHO – Preterm Birth Overview: Preterm is defined as babies born alive before 37 weeks of pregnancy are completed. There are sub-categories of preterm birth, based on gestational age:

• extremely preterm (<28 weeks)
• very preterm (28 to <32 weeks)
• moderate to late preterm (32 to <37 weeks).

Key facts – Preterm Birth

• Every year, an estimated 15 million babies are born preterm (before 37 completed weeks of gestation), and this number is rising.
• Preterm birth complications are the leading cause of death among children under 5 years of age, responsible for nearly 1 million deaths in 2013.
• Three-quarters of them could be saved with current, cost-effective interventions.
• Across 184 countries, the rate of preterm birth ranges from 5% to 18% of babies born.

Why does preterm birth happen?

Preterm birth occurs for a variety of reasons. Most preterm births happen spontaneously, but some are due to early induction of labour or caesarean birth, whether for medical or non-medical reasons.

Common causes of preterm birth include multiple pregnancies, infections and chronic conditions such as diabetes and high blood pressure; however, often no cause is identified. There could also be a genetic influence. Better understanding of the causes and mechanisms will advance the development of solutions to prevent preterm birth.

The 10 countries with the greatest number of preterm births:

• India
• China
• Nigeria
• Pakistan
• Indonesia
• The United States of America
• Bangladesh
• The Philippines
• The Democratic Republic of the Congo
• Brazil

Nationally…

March of Dimes: The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.

The March of Dimes, which was initially called the National Foundation for Infantile Paralysis, was founded by President Franklin D. Roosevelt on January 3, 1938, as a response to U.S. epidemics of polio.

Per Wikipedia the name “March of Dimes” — is a play on the contemporary radio and newsreel series, The March of Time — was coined by stage, screen and radio star Eddie Cantor. He inspired a nationwide fundraising campaign in the week preceding President Roosevelt’s birthday on January 30, 1938. Lapel pins were sold for ten cents each; special features were produced by the motion picture studios and radio industry; and nightclubs and cabarets held dances and contributed a portion of the proceeds.

                                  Eleanor Roosevelt and Lucille Ball at the 1944 President’s fundraising      Birthday Ball (We LOVE Lucy)

In 1976 it became known as the March of Dimes Birth Defects Foundation. In 2007, the name became the March of Dimes Foundation.

We appreciate The March of Dimes, a National non-profit organization that has grown into a globally connected and dynamic infant and maternal care resource.

The March of Dimes reports the following national preterm birth status:

• 2015 premature birth report card – USA – 9.5% (per 100 births) – Grade – C
• Lowest Preterm Birth Rate by State – Oregon 7.7 per 100 births
• Highest Preterm Birth Rate by State – 12.9 Mississippi
• Lowest Preterm Birth Rate by City: Portland, Oregon – 7.2
• Highest Preterm Birth Rate by City: Shreveport LA – 18.8

What can we learn from Oregon that will allow us to reduce preterm birth rates in Mississippi? And what can we learn from other nations that will help us move our C grade to an A grade in the USA?

RESEARCH has shown there are multiple factors contributing to the U.S.’s high preterm birth rate. This YouTube video (Why USA You Tube Published on Dec 20, 2014) may offer some insight!

WARRIORS-Surprised that the USA is in the top 10 of Countries with greatest number of preterm births? One of the joys of journeying globally if the opportunity to see the Neonatal Womb from various perspectives and to share information and experiences that will benefit and strengthen our pre-term birth community as a whole!

Sources:

• https://en.wikipedia.org/wiki/March_of_Dimes
• http://www.who.int/mediacentre/factsheets/fs363/en/
• http://www.marchofdimes.org/peristats/pdflib/998/premature-birth-report-card-United-States.pdf

Neonatal Womb Warriors appreciates and honors the profound commitment and courage a NICU/Preterm birth infant father’s journey entails. THANK YOU!

WARRIORS: Today we celebrate Fathers. Each of us arrived into a world of unique and diverse family circumstances. Some of us are NICU graduates; while many experienced alternative pre-term birth care. We all have fathers or at least hopefully father figures in our lives. Unless we become NICU fathers, or make a concerted effort to gain the perspectives and stories of our fathers, it may be difficult to comprehend the challenges they faced as the parent of a premature infant. Too often their experiences are silenced and ignored.

An article from Preemie Babies 101 Hand to Hold Parent Blog article titled “An Interview With A NICU Dad”; provides a recent father’s response to a wife’s questions regarding a father’s preemie experience.

Article Link: http://www.preemiebabies101.com/2015/06/interview-nicu-dad/

Content from the article below  includes:

“ What is the greatest challenge for a NICU dad?

Dealing with the immense feeling of helplessness. I always felt it was my job to take care of my family and when something happens that is so out of your control, you just feel so powerless. And, then, when I had to go back to work two weeks after my son was born, it was extremely hard to only see him for a short time each day. I felt like I was missing out on so much! Plus, it’s impossible for co-workers and family to understand what you are going through, so there really is no one outside of the NICU that you can talk to about it.

What advice do you have for current NICU dads?

 As scared or uncomfortable as you may feel right now, try to help take care of the baby any way you can or are allowed to. Some of the nurses were better at this than others, but asking me to change my son’s diapers and bottle feed him helped to make the whole experience feel more normal. Hang in there and don’t isolate yourself because that will only make you feel worse. Your baby and your baby’s mother need you to be there as much as you can be. Also, I learned so much about my son’s health, and premature babies in general, from the many conversations I had with the nurses and doctors in the NICU. What I learned from them helped me feel less anxious and more confident that my son was going to be fine.”

YOU MAY NEED TISSUES……

This you tube video shares the feelings and thoughts of a few preterm birth fathers, and may shine light upon this particular entrance into fatherhood.

Rex NICU Stories: Dad to Dad – Published on Mar 14, 2014

A Personal Thank you…..

Many preemie babies worldwide do not have a father to help care for them. Working as a volunteer in a local NICU I (Kat) witnessed an event in the life of a micro-preemie and the family that claimed her! Struggling daily to survive and thrive this little being was barely “keeping her head above water” until an amazing family came into her life! The effects of the couple’s loving visits were quickly noticed in the improvement of the baby’s vitals, and overtime, in the steady advancement in the baby’s overall health. Eventually, the baby left the NICU in the arms of the loving adoptive father and mother. The baby continued to grow and I have no doubt that the adoptive parent’s touch, attention, and deep love for the baby played a crucial part in the survival and vitality of the precious child.

MAHALO!

We want to SHOUT OUT this week to renown and globally cherished Healer AMMA, who will be visiting the Seattle area on her North American Tour (http://amma.org/meeting-amma/north-america) on June 4 and June 05, 2016. She has been an important part of our healing journeys for many years. Amma’s beauty, wisdom, grace and compassion inspire us daily. Please note that the global tour dates are also posted.

Mata Amritanandamayi, also known as Amma , or the hugging saint, is widely regarded as one of India’s foremost spiritual leaders. Amma says that her religion is love. A compassionate healer, she has never asked anyone to change their religion; only to contemplate the essential principles of their own faith and try to live accordingly. But Amma is also an impassioned force to be reckoned with! She has created an International Network of Charitable Organizations -Embracing the World (http://www.embracingtheworld.org/ ) – an NGO with special Consultative Status to the United Nations that is active in 40 Countries. And although Amma may be small in stature, she is expansive of heart, a beautiful songstress who connects directly to the poorest of poor. The “Crown Jewell” health care center of Embracing the World, Amrita Institute of Medical Science or Aims (1600 bed super-specialty hospital ) is one of Asia’s most advanced and premier medical institutions. Interested in learning more about Amma and her humanitarian efforts ? You Tube videos and even full length movies are available for your viewing pleasure. And like Pope Francis and the His Holiness the Dalai Lama, Amma radiates Joy! (when in doubt, choose Joy! Joy heals….).

Healers:

Merriam Webster defines Healer as one that heals. We are thinking that you and I could have come up with that definition!

“Acts” of healing may be mysterious, intentional , guided, unintentional, apparent or unrecognized. The presence and warm smile of an ER Patient Services Rep. can calm and inspire hope in the incoming patients and their loved ones. We have observed the obvious and subtle healing effects of particular wise and kind environmental service workers working within a health care setting. At times it seems that the disguise of anonymity provides an expanded opportunity to create, enhance, enable wholeness in ourselves and others.

You know this is true! Pets are often healers!

Take a look at this informative and fun conversation about our pet buddies: Utne Reader Using Dogs as Healers :http://www.utne.com/mind-and-body/using-dogs-as-healers-ze0z1408zhou.aspx.

WARRIORS:

WE have the capacity to enhance our own healing and support the healing of others. Our interaction and awareness of healers/healing in our lives is colored by our beliefs, education, cultural, societal, media presence, biology/biography and life experiences. The science of epigenetics may inspire us to choose to interpret our experiences with positive regard in order to enhance our own healing and well-being.

Many may be aware of contemporary well known healers such as:

Dr. Andrew Weil: an American physician, author, spokesperson, and broadly described “guru” for holistic health and integrative medicine, whose names also constitute an emerging brand of healthcare services and products in these fields-Wikipedia

Hawayo Takata: Hawayo Hiromi Takata, a Japanese-American born in Hanamaulu, Territory of Hawaii, who helped introduce the spiritual practice of Reiki to the Western World – Wikipedia

Judith Orloff MD, board certified psychiatrist and assistant professor of psychiatry at UCLA (http://www.drjudithorloff.com/about-judith-orloff.htm) advocates for “a democracy of healing”, wherein every aspect of our being is granted a vote in the search for total health. It is our birthright, both as health-care givers and health-care recipients, to reclaim our intuition to build energy and well-being.

Health Care Providers may also be powerful and effective healers. Those that are seem to have the ability to be deeply present with their patient, and whatever limited time they have with the patient may be experienced as “timeless”.

Why Healers?

We believe that the human experience is colored with opportunities for personal healing and abundant openings to impact the healing of others. Our unique and precious life journeys will allow us to deny, avoid, acknowledge, embrace and transform the challenges we face. Technology expands our capacity to access diverse and easily accessible health and healing resources, many of which are free! We do not have to wait for something to happen to transform us. We can choose to evolve in ways that empower and free us!

For preterm birth survivors in the USA there sometimes seem to be unspoken assumptions that may close rather than open doors to wholeness and healing. Please chew on this… and be aware that all humans have a right to experience wholeness, vitality, vulnerability and love.

Due to the substantial and increasing shortage of Health Care Providers it is incumbent upon us to empower ourselves and our communities with information that will expand our perceptions of healing, health and well-being. The global Neonatal Womb is in great need of expanded healthcare resources.

In a Publication dated November 2013, Global Health Workforce Alliance and World Health Organization; “A Universal Truth: No Health Without a Workforce” reported that there is a current deficit of about 7.2 million skilled health professionals. A projection model driven by population growth would lead to a global deficit of about 12.9 million skilled health professionals by 2035.

So while we determine how we may advance our Healthcare Workforce (the expansion of community health care workers is a compelling development globally and nationally) we can choose in this moment to acknowledge our ownership and abilities to positively impact our personal healing needs, desires and capabilities.

Mea Culpa:

Last week we walked out the door of NICU-centered preterm birth care into the diverse Global Community of preterm infant care and preemie survivors. Open eyes and hearts allowed us to experience the Neonatal Womb on a broader basis. We hope humility and centeredness will guide our continued awakening to the dynamic nature of our Global Neonatal Womb community. Though intriguing and exciting the journey challenges us emotionally and intellectually. Our hearts expand as we witness the courage and strength of health care providers, families and preterm survivors. Intense love permeates our community. We will learn new language, evolve our perceptions, correct our misconceptions, expand our resources, create space to grow and share “solutions”.

We apologize in advance for our naiveté. Although our Neonatal Womb family includes NICU survivors; much of our family does not have access to NICU care. We are considering language that best identifies the portion of our community that represents our preterm survivors/Warriors. We Trust that we will be guided to effectively evolve our language and wisdom over time.

There is a new HeRO in town!

 New Technology is Life-Saving Voice for Premature or Critically Ill Infants-

A new technology in the Neonatal Intensive Care Unit at UC San Diego Health is able to predict the risk of life-threatening infections up to 24 hours before they appear in severely premature or critically ill infants. The heart rate observation system (HeRO) is a new innovation worthy of exploring!

Interested? Please see the May 10, 2016 UC San Diego Health article by Michelle Brubaker:

Article Link: http://health.ucsd.edu/news/releases/Pages/2016-05-10-HeRO-technology-life-saving-for-critically-ill-infants.aspx

EXPANSION

WARRIORS: Surfing in Westport Washington is fun, but not easy.  Waves break hard and fast, rides are short, and paddling out is physically ……strenuous. My sister Ciara and dog Bella motivate and inspire me. What, or who, inspires you to adventure into the unknown?

WORLD WARRIORS GLOBAL PERSPECTIVES: UGANDA

Join us as we explore our Global Neonatal Womb! As we seek to expand our introspective capacities we hope to increase our knowledge and understanding of our global families, their challenges, resources and research. Over time, with open minds and hearts, we will take a “peek” into Neonatal Womb communities around the world.

Our Journey begins with a wander into Healthy Newborn Network. HNN is a global community of maternal and newborn health professionals and practitioners who state in their website “about” section “The Healthy Newborn Network (HNN) is an online community dedicated to addressing critical knowledge gaps in newborn health”. The resources available through this expansive and globally connected online resource amazed and excited us.

The Healthy Newborn Network: http://www.healthynewbornnetwork.org/

Today, we visit Uganda:

The Republic of Uganda, a landlocked country in East Africa , is the world’s second most populous landlocked country. Uganda is one of the poorest nations in the world. In Uganda, 226,000 babies are born too soon each year and 12,500 children under five die due to direct preterm birth complications. Leading causes of neonatal deaths in Uganda (2013) include 31% due to preterm birth complications. Of the 10 Elements of Care recommended by WHO (World Health Organization) for improved preterm birth outcomes included in Uganda’s clinical standards of care are tocolytics, magnesium sulfate, antibiotics for preterm premature rupture of membranes, and kangaroo mother care.

Link: http://www.healthynewbornnetwork.org/hnn-content/uploads/Uganda-1.pdf

In RECENT NEWS from Uganda Sandra Janet Birungi posted the following article related to preterm births on April 4, 2016 in the Daily Monitor: Study shows new method to test premature babies.

” KAMPALA. In the absence of weighing scales, measuring the size of a baby’s foot using the foot length card and danger sign screening cards can help identify if a baby is premature or has low birth weight, a new study has shown.

The study by the Makerere School of Public Health, which is being carried out in Iganga and Mayuge districts, targeted 80,000 women. Preliminary results registered a high survival rate for high risk babies admitted to the health facilities and those delivered at home. “Within four months, the trained 150 village health teams (VHTs) helped identify and counsel 764 mothers. Of these, 83 per cent were visited in the first 48 hours. VHTs screened and identified 78 high risk babies of whom 32 were low birth weight or preterm babies,” the study titled reads in part.

Dr. Getrude Namazzi, the lead researcher, said of the 280 high risk babies admitted to Iganga hospital for the past four months, 40 per cent were low birth weight. Of these, 91 per cent survived and were discharged alive and well.

Feet have more than 80 per cent sensitivity and specificity so they can be used to find low birth weight and pre-term babies and we have just found out that it works. The study has proved that high risk babies can survive and thrive even in resource-constrained settings using low cost strategies” Dr. Namazzi said while releasing the results in Kampala last Wednesday. “

Link: http://www.monitor.co.ug/News/National/Study-shows-new-method-test-premature-babies/-/688334/3144696/-/mfoum8z/-/index.html

Thank you Uganda! We honor your journey…….

WARRIORS! Wonder if people can surf in landlocked countries like Uganda? Catch this video

Video embedded · How do you surf in a landlocked country?

Aloha nui loa!

“Ohana means family. Family means nobody gets left behind — or forgotten.”

-Lilo Pelekai, Lilo & Stitch

Ohana of the Neonatal Womb met on April 30, 2016 in Seattle, WA. to raise funds, celebrate life, and support infant health at the March of Dimes (A fighting chance for every baby) of Greater Puget Sound March for Babies. The colorful array of bodies, personalities and connections created a kaleidoscope of activity until the energies moved forward in an organized pattern, merrily streaming into and along the sunlit route. The Neonatal Womb was well represented by families, professional care providers and related staff, NICU babies and grads, Community and Corporate supporters. My heart was happy to meet other NICU Grads from a variety of ages. In the true spirit of Ohana, symbolically no member of the Neonatal Womb was unrepresented or left behind. Participants were gifted with the rare opportunity to gather and connect socially within a beautiful urban nature environment to enjoy each other and the universe we share. Thank you for this gift March of Dimes! http://www.marchofdimes.org/index.aspx

SHOUT OUT to NICU parent supporters Seattle Parents of Preemies who provided us with the inspiration and materials to create this Neonatal Womb Warriors sign at the event! “About” Seattle Parents of Preemies states “Welcome to Seattle Parents of Preemies (SPP)! We are a parent-led support group for NICU and preemie families located in the Seattle and Eastside areas. SPP meets twice monthly (Swedish First Hill and Evergreen Health in Kirkland) to support to our members and provide information relevant to preemie families”. The group was welcoming, loving and engaging as we entered their booth at the event. NICU parents, please see their upcoming events at http://www.seattlepreemies.com/

Warriors! Interested in exploring how we might better promote the health and well-being of the next generation? Curious about Fetal Origins research? You might want to catch the wave of new science exploration presented in this TED talk below!

 ALOHA

“A twinless twin is a person who had a twin or multiple birth sibling(s) who has died. There are many causes for such losses and different issues facing each type of twin loss.” -Wikipedia

A twinless twin (surviving twin) who has lost a twin sibling before or shortly after birth due to miscarriage, vanishing twin syndrome, stillbirth, or due to medical complications may not have conscious memory of their twin but may sense something missing from their lives even if they were not informed they were indeed a twin. Many report feelings of grief and loneliness related to the loss of the twin and the absence of conscious memories. A twinless twin who has lost a twin as a child or adult experiences the same sense of loss as any sibling may experience, although the feelings may be intensified depending on the closeness experienced by the twins. A surviving twin may feel part of themselves is missing as well, whether the twins were fraternal, identical, same or opposite sex twins. “A vanishing twin, also known as fetal resorption, is a fetus in a multi-gestation pregnancy which dies in utero and is then partially or completely reabsorbed by the twin.”-Wikipedia

Kat: My family has always openly and actively acknowledged my twin brother Cruz, who died shortly after our birth. Cruz is my companion in life’s journeys, my spiritual advisor, ever present and beloved.

Kathy: (Kat’s Mom and blog partner): In the early 1980’s while participating in a Neurolinguistic Programming Intensive Training at Esalen Institute in Big Sur California a co-participant expressed the lifelong emotion he had experienced of feeling alone and lost in some vague but disturbing way. This very successful late 30-40 year old attorney wanted to explore this feeling further during the course. Through the hypnotherapy/neurolinguistics programming experience he recalled being in the womb with a twin. Back in the 80’s phone calls from Esalen required a wait in the parking lot to use a pay phone with a maximum time limit per user (and a line of people also waiting to use the phone). Following an anxious wait in a long line, the brave attorney nervously dialed his mother’s number and she answered, confirming her son had been born a twin, and the twin brother had died at birth. The family had never discussed the deceased twin with their surviving son. As training continued it was very clear that the confirmation and clarification of feelings the participant had experienced had provided the surviving twin with an opportunity for great healing and empowerment.

Are you a surviving twin, family member, friend or healthcare provider? Abundant cost- free empowerment tools are available on-line. Below is a small example of publications we found that may interest some of you!

1)Always My Twin: By Valerie R. Samuels Illustrator: Najah Clemmons 

A book for young children who have experienced the death of their twin sibling, and for any child whose twin died before birth, after birth or as a young child.

2)The Lone Twin: By Joan Woodward

Joan Woodward, an Attachment Therapist and founder of the Lone Twin Network, an organization that enables lone twins to contact each other and share their experiences. The book was revised in 2010 and may be a valuable resource for health care professionals, parents/caretakers, and surviving multiples alike!

3) “Psychology Today” posted 05/11/15:Vanishing Twin Syndrome: Your Intuition May Be Right – By Susan Heitler Ph.D.

Blog Link- https://www.psychologytoday.com/blog/resolution-not-conflict/201505/vanishing-twin-syndrome-your-intuition-may-be-right

“The in utero loss of a “vanishing twin” nonetheless can have profound emotional impacts on the surviving child, particularly when the loss occurs well into the pregnancy.” Dr. Heitler further states “Your intuitions well may be offering you clues to understanding yourself, and others, more deeply”.

4) Neonatal Research  -Following important research in neonatology / newborn medicine from around the world   https://neonatalresearch.org/2016/04/06/death-of-a-twin/

About Keith Barrington, Author: Keith J. Barrington is a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal. He is Professor of Paediatrics at the University of Montréal. He was formerly chair of the Society of Neonatologists of Québec.  His particular research interests are in cardiovascular support, in apnea and its treatment, in the ethics of decision making for high risk newborns, and in anything in clinical care that might affect outcomes. The 22 of May 2005 he had a very preterm baby girl at 24 weeks gestation, her hand is in the banner photograph on this blog, with his ring around her wrist. She is now in her fourth year of school.

 Death of a twin: Posted on 6 April 2016 by Keith Barrington

“Twins are much more likely to end up in the care of the NICU than singletons, and much more likely to be extremely preterm, and as a result the phenomenon of having one of twins die, while the other remains in our care, is not rare.

When I was younger, I used to think it was kind to stop referring to the surviving twin as ‘twin B’, and to remove reference to the deceased twin from the name card of the survivor. I think now that I was wrong, that we should recognize the deceased twin, and help the parents to cherish their memory without trying to erase them from the NICU.

Although I am often somewhat dismissive of qualitative research, which frequently makes excessive extrapolations from tiny data sets, there are some questions that require a qualitative approach. For example “what is the experience of mothers who have lost one of a pair of twins?”

This article from last year is a report of a quantitative study of 14 mothers who had lost one of a pair of twins, 5 antenatally and 9 after birth, in the NICU. (Richards J, et al. Mothers’ perspectives on the perinatal loss of a co-twin: a qualitative study. BMC Pregnancy & Childbirth. 2015;15(1):1-12. Open Access)

The message of the article is that, not surprisingly, this is a major life event which shakes mothers just like the death of a singleton, but that the health care providers can make a difference, sometimes with very minor effort on our part.

A good example of what NOT to say: ‘at least you’ve still got one’. And a mother’s response:

I know I’m really grateful I still have[surviving twin] but that’s like saying to someone that has a child of four and six and the six year old one dies, ‘well you’ve still got the other one, so that’s ok’.

An example of how profoundly the event can affect the family:

‘And [surviving twin’s birthday party] it’s a week after, it’s the Sunday after her birthday not at the weekend of her birthday because I couldn’t …I couldn’t em I just can’t, I just find her birthday a really difficult day’

One of the mothers reports that a nurse would often refer to the surviving twin using the wrong name, the name of the deceased baby. That is not a hard thing to avoid.

One message is that my old idea of removing the designation “twin B” from the surviving twins crib is something that we should discuss with the parents, ask them “do you want us to still keep that notation on the identification card, or not?”

There are many other good messages in the article, which as mentioned is open access. One of the less scientific parts of the manuscript, but the most helpful for clinical practice is a separate document ‘Recommendations for Best Practice’: A list of recommendations drawn from the data for health professionals, based upon the views and experiences of participants. Which you can also download freely from the BiomedCentral website, the link wasn’t immediately obvious to me, you have to scroll down to the end of the manuscript, but before the references to find the link. I copied the link and mapped it to the title above, which might work, but please go look at the article as well.

The recommendations are divided into sections, and I am not going to reproduce them all here, just a few highlights: Acknowledging Bereavement: It is important to mothers that health professionals fully acknowledge parental grief at the loss of a twin whilst simultaneously focusing upon the care of the survivor. Mothers value very highly health professionals who allow them time to talk about their loss and refer to the names of both their surviving and deceased twin. Trauma and Grief: Health professionals should recognize that the traumatic nature of their loss can impact upon mother’s ability to process information or make decisions in respect of the surviving baby. Information: Wherever possible, continuity of the care team is important for bereaved mothers. This provides ‘familiar faces’ for mothers with whom they build up relationships of trust during their time in hospital”.

And on another note   🎶

Teen Birth Rate, Multiple Births Reach a Historic Low – US News and World Report 12/23/15. This article reports that the number of women who gave birth to triplets, quadruplets or larger sets of babies declined again in 2014, showing a 40 percent decrease since their peak in 1998, according to data released Wednesday from the Centers for Disease Control and Prevention. The number indicates a decline in high-risk pregnancies associated with fertility treatments, though the number of twins born in 2014 increased slightly.

Dearest Warriors! Our NICU siblings are arriving in the USA at a current rate of 1 out of 9-10 births. The paths we create on our journeys to wholeness hold the potential to inspire, empower and provide options to those who follow.

NICU Nurses:

• You are many

Flyers, Travelers, Homebodies

• Eying tiny callers

Focused, ready, tenacious

• Fierce protectors, tender touchers

Faith-filled, hopeful, life affirming

• Hellos and goodbyes

You run a tight ship

NICU Mom:

• Accidental tourist

Eying tiny progeny

• Fragile, confused, lost

Naked, barely breathing

• My heart, my child, your hands

Sorry. No hello, goodbye … just a foot and then a foot

• I learned to run a tight ship           –Anonymous

My breath catches a bit as I watch the NICU nurses caring for their tiny patients knowing we too were held so tenderly….

Cherished, Beloved Miracle Workers of the NICU! Thank you NICU Nurses for your compassion, love, courage, inspiration, wisdom and professional presence within the NICU.

WARRIORS:

NICU Nurses, the Heartbeat, steady pulse of the NICU, provided us with critical care as they protected, treated, nourished, cuddled and loved us. A hearty, courageous and light-filled lot, they know all too well that the ride, the wave, is forever unique. We may never reconnect directly with our NICU caretakers. However, we are miraculous and we have the power to “pay it forward”!