OPEN DOORS

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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.

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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?

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WORLD WARRIORS!

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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!

Our Ohana-

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“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

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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!

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TWINLESS TWIN

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“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.

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