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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The Steady Pulse of the NICU

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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”!  

Have you ever wondered about the environment you lived in as a Neonate and the technology that kept you alive?

 

The first modern infant incubators in Europe were created in the mid to late 1800’s. Dr. Martin Couney, a pioneer of Neonatology, operated exhibits of premature infants in different parts of the world in the late 1800’s into the following century. In an effort to fund patient care and progress his research Dr. Couney charged the curious Coney Inland New York Public 25 cents per participant to view the infants/incubators. Please note the Baby Incubator Exhibit at the  1909 Seattle World’s Fair pictured below:

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A newer transportable incubator has been invented by a group of students engaged in a class project at Stanford University. Embrace was founded at Stanford University’s Institute of Design in 2007-08. The Embrace Warmer costs a fraction ( 1% ) of the cost of a standard incubator. Best of all, the incubator is effective, safe, simple, portable, hygienic, reusable, and creates the opportunity for kangaroo time with loved ones. It is used widely in India, and also used in Asia, Africa and Latin America. A video is better than a thousand words, right? Check this out!

Neonatal Womb Warriors! The process leading to the development of the Embrace Warmer is so inspiring! This video documents the Power we all have to create change and solutions through group consciousness and collective creativity.

Sending a shout out to the past and future NICU innovators (are you one?) Gift idea, friends! Spread the Warmth with Embrace!https://secure3.convio.net/cfcol/site/Donation2;jsessionid=00000000.app362b?df_id=1601&1601.donation=form1&NONCE_TOKEN=7BBBDE31EEA42BB9AB0140AF026D208E

Excellent Bruddahs!

 

Questions; lots of them…..

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Research related to the long term effects of preterm birth is itself in the early stages of development. I have often heard that preemies have a higher incidence of conditions such as dyslexia and other learning disorders, ADD/ADHD, and autism. I am dyslexic but then so are all of the non-preemie women in my immediate family!

The Center of Disease Control (2016) reports 1 in 9 babies in the USA are born preterm (before 37 weeks gestation). 1% of these preemies are micro-preemies (born 27 weeks gestation or earlier). One quarter of all preterm infants experience severe disability such as cerebral palsy, intellectual disability, autism, blindness, or deafness according to Iris Lesser, Assistant Professor of Pediatrics and Director of the School-age Unit (SAU) at Einstein’s Children’s Evaluation and Rehabilitation. Iris Lesser reports that another 1/3 of preterm babies will develop less severe neurodevelopmental and/or neurobehavioral disorders including learning disabilities such as dyslexia, ADD/ADHD, and other conditions that also occur in full term infants.

Current research supports the fact that the development of learning disabilities, autism, and ADD/ADHD, etc. is multifactorial. Many theories exist, and research progresses in numerous directions. From a neurolinguistic perspective one might question whether some people are learning “disabled” or are we, as a society, teaching “disabled”? Even so, there are beneficial aspects of so called learning disabilities such as dyslexia. Many famously intelligent people throughout history such as Albert Einstein, Thomas Edison, Richard Branson, Winston Churchill, John Kennedy, Pablo Picasso, Leonardo da Vinci, Steven Hawkings, and Steven Spielberg are/were reported to be dyslexic.

Similarly, numerous famous people diagnosed with ADD/ADHD have demonstrated the positive aspects associated with ADHD. Consider the accomplishments of David Blaine, Richard Branson, Ryan Gosling, Adam Levine, and Channing Tatum. An article entitled “Benefits (Yes Benefits!) of Having ADD/ADHD” published by Hallowell New York City states “People with ADD tend to have many creative talents (usually underdeveloped until the diagnosis is made) and a highly original, out-of-the-box way of thinking. As highly intuitive people with a special “feel” for life, they can possess an almost “sixth sense” that lets them see straight to the heart of a matter instead of having to think it through methodically. Since impulsivity is one of the core symptoms of ADD, it stands to reason that people with ADD are more creative than their non-ADD counterparts”.

And lastly, a current Science Daily (03/22/16) article entitled “Noise disrupts the tactile skills of premature babies” presents research related to the effects of noise, light and other stimuli of the NICU environment on the underdeveloped brain of the NICU preemie. If this subject interests you, check this out:

https://www.sciencedaily.com/releases/2016/03/160322082048.htm

Warriors: Regarding the long term effects of preterm birth, do you, like me, have more questions than answers? The Empty Bowl, the space inviting pure presence: perhaps therein lies the path of knowing…

WORKS CITED:

http://www.einstein.yu.edu/features/stories/944/the-ongoing-challenges-of-prematurity-tackling-learning-and-developmental-disabilities/. 14 Oct. 2013. Web. <http://www.einstein.yu.edu/features/stories/944/the-ongoing-challenges-of-prematurity-tackling-learning-and-developmental-disabilities/&gt;.

-Benefits Yes Benefits of Having ADD/ADHD.” 2013. Web. <http://www.hallowellnyc.com/HallowellNYC/LivingwithADD/BenefitsYesBenefitsofHavingADDA/index.cfm&gt;

Vinyasa Yoga

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Unable to attend a group yoga class tonight due to a little case of the flu I picked up at work, I decided to explore YouTube videos and settled on a “Yoga for Healing and Meditation 30 Day” option which provided me with a Vinyasa experience. The description of Vinyasa per Wikipedia is “Sequential movement that interlinks postures to form a continuous flow. It creates a movement meditation that reveals all forms as being impermanent and for this reason are not held on to”. Since I am in the process of letting go and creating space within, this Yoga option appealed to me. I was challenged by some movements, and actually a little relieved no one was watching! The instructor focused the participant’s attention on deep breathing to relieve anxiety, and I did experience my mood transitioning from anxious to calm. My favorite part of the session was the closing meditation (so relaxing!). I still have the flu, but feel better about it……

Warriors! You are the sky. Everything else is the weather….like the flu….

What’s the weather like in your “neck of the woods”? How do you “weather” life’s storms?

All is well. Peace, brothers and sisters. Kat

Thanking Our Providers

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This weekend I attended the Citizen’s University, a conference to explore community-building and to teach leadership in civic life. Hosted in my home City of Seattle, I joined the conference as a representative of the University of Washington Husky Leadership Initiative. At the conference catalysts and activists from around the US gathered to listen, learn, share, and grow. Diverse professional leaders and social activists shared the podium to express their passions and calls for action for a variety of social causes. Closing the conference was a panel that included Dr. Abdul El-Sayed, the new executive director of Detroit Department of Health & Wellness Promotion. On stage Dr. El-Sayed reported a mortality rate in Detroit of 15 per 1,000 infants who do not make it to their 1st birthday; a far worse mortality rate than the US National average of 4 infant deaths per 1,000 by age one. An innovative Public Health Administrator, Dr. El-Sayed acknowledges the issue of infant mortality as a top priority in his community and he is working to understand why marginalized populations suffer worse health than their counterparts, especially in relation to preterm birth and infant mortality. As you may see in the picture, it was my pleasure to meet Dr. El-Sayed, a compelling preterm birth advocate and NICU community partner.

Sending a shout out to Dr. El-Sayed! Thank you for your efforts to serve the NICU community.

Neonatal Womb Warriors – who impacted your NICU journey?

Please consider taking the time to thank them whether it be in your heart, through a note, an email or a social media message!We are powerful and grateful warriors!

What are your passions and “calls for action”?

We are #NICUStrong!

Hatha Yoga 101-

 

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In the spirit of empowerment and self-healing I participated in a Hatha yoga class last night. The room was packed with eclectic community members of LA Fitness most of whom attend the class on a regular basis. The instructor was engaging, funny, kind, and motivating.  As a fitness instructor myself with some experience engaging in yoga, I felt comfortable yet challenged attempting the various yoga poses during the class. I cherished each moment during class when a muscle would reach out and say “here I am!” My relationship with deep breathing is a mixed one; often resulting in feelings of significant anxiety. However, during the yoga class I noticed though I was breathing deeply I was not experiencing anxiety. It seems that for me the combination of deep breathing with movement was comforting. I find that quite intriguing. As I explore healing modalities and build a safe internal haven for my soul, I will be exploring a few different types of yoga over the next few weeks and sharing my experiences with you.

Please share with yourself and perhaps with your kindred Neonatal Womb Warriors your secrets for bringing a full and integrated soul along for the ride!

PTSD RESEARCH & NICU GRADS

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Growing up I was aware of the medical history of my NICU journey.  I am curious as to what impact my NICU experience as a patient has had on my life today. I recently came across an article from the Journal of Perinatology titled “Recognizing the Potential Effect of Stress and Trauma on Premature Infants in the NICU: How are outcomes affected?”

The study suggest that researchers are developing an increased understanding of the risk premature infants have related to developing psychological, emotional, and behavioral disturbances as a result of the trauma they endure as patients. The article abstract states, “Extensive research of the long term outcomes of premature infants has shown significant risk for emotional, behavioral, and psychological problems.”

Researchers Barker and Rutter discovered that during the average Neonatal ICU(NICU) stay an infant may undergo an average of 60 procedures many which may be painful and/or invasive. In addition it is noted that the persistent stress and/or traumatic events in the NICU during brain development is occurring at a profound rate, a factor researchers are taking seriously into account related to PTSD present within the NICU Infant/NICU Grad population. In the article Dr.Perry states that “It is important for us to abandon the myth that infants and children can get over it because they didn’t even know what was happening”.

As a NICU Grad I am grateful for the visibility researchers like Dr.Perry are shining onto this important matter. In my personal experience as an adult volunteering and serving in the  NICU I have often been questioned by the “myth” that I couldn’t possibly be aware of the trauma that I faced as a patient.

Personally upon returning to the NICU I have become increasingly aware of my own subconscious understanding and cellular knowledge of the trauma I survived as well as the self-healing journey I am currently on.I believe increasing the dialogue surrounding this topic holds great value for our current NICU community and future generations to come.

Sending a big thank you to all the researchers,health-care providers  and NICU Community members advocating for this topic!

As a NICU survivor have you ever been curious about the trauma you experienced as a NICU patient and/or NICU related PTSD?

Works Cited:

Maroney, D. (2003). Recognizing the Potential Effect of Stress and Trauma on Premature Infants in the NICU: How are Outcomes Affected? Recognizing the Potential Effect of Stress and Trauma on Premature Infants in the NICU: How Are Outcomes Affected?, EISSN: 1476-5543, 679-683. Retrieved February 15, 2016, from http://www.nature.com/jp/journal/v23/n8/full/7211010a.html

Dear Ego Lets Talk!

Surfing Sayings!

“Ahem!” I said to my ego. We need to talk! It has come to my attention that your very loud obnoxious voice continues to isolate me from the realities and deep personal human connections available in the human dimension. No doubt your protection was urgently required in my early years when I was separated from my deceased twin and isolated from other humans in general in order to sustain my life.  I learned to keep my breath shallow and one foot in/one out in this human dimension.  You enabled me to vastly progress my spiritual expansiveness and experience a dynamic rich and rewarding existence in other realities.

Time to expand and heal, my friend!  Let’s redirect your energies to support my journey toward deepening personal relationships in the human realm!  Now, for a strategy……..

Neonatal Womb Warriors! It is all about the JOURNEY.  Please share yours………

Scars…what do they mean?

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SCAR=Strength Courageous Actualized Resilience-Kat Campos

Born four months early my heart wasn’t fully developed. Weighing one pound 3 ounces at 3 ½ weeks old I underwent open heart surgery with no anesthesia. The surgical scars along my rib cage and across my upper back to my chest mark my beginnings and chart my growth. I cherish the artfully crafted scars (best tattoo ever) my surgeon, a medical pioneer and beautiful woman, adorned me with. To this day I am grateful for my surgical and neonatal team who were willing to take a leap of faith in providing me with the life-saving surgery.

I didn’t think much about my scars until I began surfing in Hawaii at age 11. People began to randomly ask me if I had been bitten by a shark? I would laugh and simply reply “I had heart surgery when I was a baby”. It was then I began to recognize the significance of my scars and how I cherished the story of survival they represented. I knew that for some removing the scars would have value, but my scars represented to me abiding love and immense beauty.

Over the years my wise and loving surfing teacher and spiritual guide Virgil advised me to respect and feel the water, do not hesitate to get up, hold my space, be one with the wave” and so much more. Riding out the heart surgery and choosing to stay here may have been one of the biggest waves I have surfed to date.

My scars are a story of STRENGTH and COURAGE held by my mom, my family, and my medical team. They are the ACTUALIZATION of hope and represent the RESILIANCE of all who believed.

Take a moment to breathe….. You are strong, courageous and full of actualized resilience! WE are here!

A Shout-Out this February to heart surgery Survivors, Caregivers and the Cardiac Support Resource community at large!

Do you ever think about your scars seen and unseen and what meaning those scars hold for you?