PANAMA

 

Biodiversity, the Panama Canal, and Birding  … Oh, Panama…………

March of Dimes  

Panama Preterm Birth Rate: 8.1 (Global 11.1, USA 12%)   Country Ranking: 123 (USA 54)

Panama, officially the Republic of Panama is a country in Central America, bordered by Costa Rica to the west, Colombia to the southeast, the Caribbean Sea to the north and the Pacific Ocean to the south. The capital and largest city is Panama City, whose metropolitan area is home to nearly half the country’s 4 million people. Panama’s politics take place in a framework of a presidential representative democratic republic, whereby the President of Panama is both head of state and head of government, and of a multi-party system. Executive power is exercised by the government. Legislative power is vested in both the government and the National Assembly. The judiciary is independent of the executive and the legislature.

Healthcare in Panama is provided through a system through the government and a private sector. The public sector is funded through the Ministry of Health and the social security System. Problems with the public health care system are in the countryside where lack of funding creates a shortage of beds for their number of patients. The majority of doctors prefer to live in Panama City where there are higher patient loads and more economic opportunity.

SOURCE: https://en.wikipedia.org/wiki/Panama  

COMMUNITY

Let’s Get Ready to  celebrate World Prematurity Day on November 17, 2018. World Prematurity Day is observed on November 17^th each year to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. In 2014 world renown photographer Anne Geddes created the video and a striking picture of a premature infant to acknowledge and celebrate World Prematurity Day.

Anne Geddes, Photographer, March of Dimes Volunteer                                         Published on Oct 1, 2014 Anne Geddes, one of the world’s most widely respected photographers, for her tireless efforts on behalf of babies worldwide,” says March of Dimes President Dr. Jennifer Howse. “Her work will help focus attention on the critical work needed to give all babies a healthy start in life.”

Progressive intentions, strong collaboration, access to pertinent data bases, hard work, and focus on maternal and child health and well-being have created amazing medical care advancements in Panama!

 

 Remarkable Improvements in Maternal and Child Health Care in Panama’s Rural Areas

December 14, 2015

Since 2008, Panama has delivered basic health services to nearly 180,000 beneficiaries per year from rural non-indigenous areas through mobile health teams. Despite the difficulties, results are remarkable: pregnant women receiving prenatal controls rose from 20% to 86%, children below 1 year with complete vaccination scheme rose from 26% to 96%, and professionally assisted delivery increased from 6% to 92%.

Challenge: Although Panama achieved important health outcomes (under 5 mortality declined from 34 to 20 deaths per 1,000 births between 1990 and 2004) and devoted a substantial amount of its GDP to health expenditures (7.7 percent in 2004), well above the regional average of 6.5 percent, inequality in the health sector persisted. Due to geographical, financial and cultural barriers to access key preventive services for mothers and children, poor rural households experienced lower health outcomes. For instance, immunization rates increased for the non-poor but decreased between 4 and 5 percentage points in poor households (except for the anti-tuberculosis vaccine BCG).

Solution : In 2008, the Minister of Health (MOH), with IBRD’s Project support, decided to introduce the Health Protection for Vulnerable Populations program (PSPV, for its Spanish acronym) to deliver a package of basic health services to poor non-indigenous populations in rural areas. In order to deliver the package of health services, the MOH signed performance agreements with local MOH teams and private sector organizations. These agreements were based on capitated payments and a results-based financing approach, innovative methodologies introduced by the Bank.

Results: According to audited data for the Project, nearly 180,000 beneficiaries per year living in non-indigenous rural areas received regular access to a basic package of health services through the mobile health teams financed by IBRD. The following results were achieved:

• Percentage of pregnant women with at least 3 prenatal controls increased from 20% (2010) to 86% (2014);
• Percentage of children below 1 year with a complete vaccination scheme for their age increased from 26% (2010) to 96% (2014);
• Percentage of women delivering children with the assistance of trained personnel from MOH increased from 6% to 92%.

In addition:

• 54% and 78% of individuals diagnosed with diabetes and hypertension, respectively, received prescribed drugs according to MOH’s protocols:
• 100% of Panama’s health regions completed the survey and mapping of human resources, equipment and infrastructure:
• 100% of Panama’s health regions are using an automated monitoring and information system for assessing achievement of results of primary health care providers.

Bank Group Contribution-

• IBRD total investment: US$40.00 M.
• Government of Panama total investment: US$ 16.30 M.

Partners: The Project was implemented with a strong partnership among IBRD, the Financial and Administrative Health Management Unit –UGSAF – from the MOH, MOH Regional Offices, and private sector providers.

Moving Forward : The Inter-American Development Bank stepped up its support to Panama’s effort to reach the remote rural areas following the conclusion of IBRD’s Project in 2014.

There is a new IBRD Project under preparation to continue supporting Panama to address its inequality challenge in the health sector. The new project focuses on the inclusion of indigenous people from the “comarcas”, in line with the World Bank and Panama Country Partnership Framework.

SOURCE: http://www.worldbank.org/en/results/2015/12/14/improvements-in-maternal-and-child-health-care-in-panamas-rural-areas     

FLOATING DOCTORS: What is a mobile clinic?

 

PREEMIE FAMILY PARTNERS

PsychCentral  By: Traci Pedersen

Parents of Early Preemies More Likely to Worry About Grown Kids

Even after very preterm babies have grown well into adulthood, their parents still tend to worry more about them compared to parents of full-term babies, according to a new analysis conducted by researchers at the University of Warwick and University Hospital Bonn.

According to the World Health Organization, an estimated 15 million babies are born preterm (before 37 week so of gestation) and this figure is rising. Premature birth is the number one cause of death in young children, with most preterm-related deaths occurring in babies who were born very preterm (at 31 weeks or less).

Those who survive may spend weeks or months in the hospital and may face lifelong problems such as cognitive disabilities, respiratory problems, visual and hearing problems, digestive problems, and cerebral palsy.

For the study, the researchers compared the perception of parents whose children were born very preterm with a control group born at term. They also analyzed the opinions of the children.

“Previous work from Canada had suggested that the health-related quality of life of preterm born individuals may decrease as they reach adulthood. However, this study found while quality of life improves for term born adults it remains lower for preterm born participants,” said first author Nicole Baumann, a doctoral student who worked with Professor Dieter Wolke at the University of Warwick’s department of psychology.

The researchers interviewed the parents of 260 individuals born very preterm or with very low birth weight, as well as the parents of 229 individuals born full term. They also interviewed the children themselves at age 13 and then as adults at age 26. The data was gathered as part of the prospective Bavarian Longitudinal Study which began in Germany in 1985.

The researchers looked at health-related issues such as vision, hearing, speech, emotion, dexterity and pain. They asked questions relating to these such as “Are you able to recognize a friend on the other side of the street?” and “Are you happy and interested in life?”

The findings revealed that adult children whose parents were more worried about them having a lower quality of life, did indeed experience more periods of unemployment, were more often the recipients of social benefits, had fewer friends, and were less likely to be with a partner.

There is a positive element to the study, however, in that the findings indicate that preterm participants don’t believe that their health-related quality of life gets worse between age 13 and 26, even though their parents believe the quality does diminish, particularly in pain and emotion.

The study is published in the journal Pediatrics.  Source: University of Warwick

SOURCE: https://psychcentral.com/news/2016/03/27/parents-of-early-preemies-more-likely-to-worry-about-grown-kids/100960.html  

 

Kathy on Parent Worry and Grown Preterm Birth Survivors-

Kathy: Straight -up: I worry differently about Kat’s health than I do about the health of my  other adult children. At a deep primitive level, my body associates a feeling of helplessness related to Kat’s health even though I have been very proactive in supporting her wellbeing. The preterm birth experience is often traumatic to the infant and their caregivers/family. When a person experiences trauma, anxiety and worry are generated in unique whole-body fashion, where cellular experience and intelligence, not thinking and language, are major players. My anxiety following the death of Kat’s twin, her long term ICU stay and ongoing health issues solidly changed my breathing patterns and level of anxiety for many years. However, once she was weaned off of the steroids (one year of age), I did not hold Kat back from experiencing a full life.

Not letting worry run the show takes action, commitment and faith. Research regarding the medical and psychological challenges and associated treatment strategies for adult preemie survivors is just beginning to develop. With what we know now, heart, lung, pre-verbal  PTSD are just a few of the issues preterm birth survivors may experience. Kat is currently exploring some health care issues that may be preterm birth related. My anxiety is due in part to the fact that foundational resources for information, guidance, prevention, diagnoses and effective treatments are not defined for the preterm birth survivor community.

Now is the time to focus research efforts on evaluating and understanding preterm birth survivor needs specific to the population. As we know, globally an estimated 11% of the population experiences preterm birth. A functional medical platform for adult preterm survivor health is only beginning to be explored and defined. Within this expansive preterm birth community, the need,  research potential, and opportunity to create better health within our community is abundant. As Global community members we do have access to the  foundational concepts of cultural, spiritual and general health and wellness that may support our basic health needs (nutrition, exercise, stress reduction, sleep, etc.). In countries that provide universal health care, we note that preterm birth rates and maternal mortality are generally lower.

 I still worry, so I mediate, and I let go, because I meditate, and my worry becomes curiosity, so I research, which increasingly opens my eyes to the Neonatal Womb community, our Global family, so I can take productive action to counter the worry and hopefully give back to the community that empowered Kat to live. I firmly believe in the scientific principles of quantum physics/mechanics and manifestation (what you see is what you get).  Within this process, our journey, with commitment I choose to see our Neonatal Womb Community experiencing increased support, health, and wellness.

INNOVATIONS

Healthcare Informatics  February 19, 2018 by the Editors of Healthcare Informatics

Innovator Awards Program 2018: Semifinalists

Duke University School of Medicine (Durham, N.C.)   A NICU discrete event simulation model

Duke’s neonatal clinicians care for more than 800 babies each year in the Duke Neonatal Intensive Care Unit (NICU). Although the majority do well, about 40 babies do not survive. How could they improve outcomes and save lives? Duke’s neonatal research team partnered with analytics company SAS to create an analytics-based model of Duke Children’s Hospital’s Level IV neonatal intensive care unit. The result was the creation of a discrete event simulation model that closely resembled the clinical outcomes of Duke’s training unit, which was validated using data held back from the original model, which also closely tracked actual unit outcomes.

The model uses a vast resource of clinical data to simulate the experience of patients, their conditions and staff responses in a computerized environment. It creates virtual babies experiencing care within a simulated NICU environment, including virtual beds staffed by virtual nurses. The research team attests that they cannot find any evidence of discrete event simulation modeling being used in a NICU setting, making this a first in neonatal care.

SOURCE: https://www.healthcare-informatics.com/article/innovation/innovator-awards-program-2018-semifinalists  

 

Autism spectrum disorder and prematurity: towards a prospective screening program.

By:  Rev Neurol. 2018 Mar 1;66(S01):S25-S29.03/01/18 Hernandez-Fabian A^1,2,3, Canal-Bedia R^1,3, Magan-Maganto M^1,3, de la Fuente G^2,3, Ruiz-Ayucar de la Vega I^2,3, Bejarano-Martin A^4,3, Janicel-Fernandez C^1,3, Jenaro-Rio C^1,3.Abstract in English, Spanish

INTRODUCTION:

The prevalence of autism spectrum disorders (ASD) reported in current studies in risk groups such as preterm or low birth weight infants is higher than in the normal population. This fact has led to the increase in recent years of screening studies that investigate possible risk factors for ASD in preterm newborns and their developmental trajectory.

AIM:

To present the results of the main screening studies of preterm newborns in order to propose screening recommendations for this population at risk.

DEVELOPMENT:

The results of the studies presented suggest the possibility that the trajectory of socio-communicative and behavioral development of preterm infants differed from what was expected if their birth had occurred at term. This supports the fact that screening programs are carried out based on developmental surveillance and that it is advisable to use screening tools adapted to this population at risk.

CONCLUSION:

Premature children are a risk group that shows differential characteristics for the screening of ASD.

SOURCE: https://www.ncbi.nlm.nih.gov/pubmed/29516449   

 

Success of blood test for autism affirmed   

Science Daily – News-from research organizations                                                                  First physiological test for autism proves high accuracy in second trial                          Date: June 19, 2018  Source: Rensselaer Polytechnic Institute

Summary: One year after researchers published their work on a physiological test for autism, a follow-up study confirms its exceptional success in assessing whether a child is on the autism spectrum. A physiological test that supports a clinician’s diagnostic process has the potential to lower the age at which children are diagnosed, leading to earlier treatment. Results of the study, which uses an algorithm to predict if a child has autism spectrum disorder (ASD) based on metabolites in a blood sample, published online today, appear in the June edition of Bioengineering & Translational Medicine.

SOURCE: https://www.sciencedaily.com/releases/2018/06/180619122434.htm   

HEALTH CARE PARTNERS

The art of focus – a crucial ability | Christina Bengtsson | TEDxGöteborg                Published on Feb 9, 2017 -How do you bring out the best in yourself? According to Christina Bengtsson –Swedish world champion in precision shooting – the answer lies in the word “focus”. It is a phenomenon she has spent her whole career exploring and she warns us that part of the next generation may not possess this. (The Art of Focus,2017)

You may wonder why we address healthcare provider wellness in our blog, and the reasons are pretty straight forward. We are experiencing a critical health care provider shortage globally. 11% of newborns are born prematurely. Our community includes Labor and Delivery, NICU specialists/Neonatologists, Nurses, Health Care Technicians, Therapists, Emergency Medicine, Family/General Practice, Community Health Care Workers, Psychologists, and so on. All community members including our health care providers need access to personal and occupational healthcare resources. We must create systems that attract, develop, train, employ, retain and continue to educate our provider family.

 

The Atlantic   Rena Xu   May 11, 2018

The Burnout Crisis in American Medicine: Are electronic medical records and demanding regulations contributing to a historic doctor shortage?

During a recent evening on call in the hospital, I was asked to see an elderly woman with a failing kidney. She’d come in feeling weak and short of breath and had been admitted to the cardiology service because it seemed her heart wasn’t working right. Among other tests, she had been scheduled for a heart-imaging procedure the following morning; her doctors were worried that the vessels in her heart might be dangerously narrowed. But then they discovered that one of her kidneys wasn’t working, either. The ureter, a tube that drains urine from the kidney to the bladder, was blocked, and relieving the blockage would require minor surgery. This presented a dilemma. Her planned heart-imaging test would require contrast dye, which could only be given if her kidney function was restored—but surgery with a damaged heart was risky.

I went to the patient’s room, where I found her sitting alone in a reclining chair by the window, hands folded in her lap under a blanket. She smiled faintly when I walked in, but the creasing of her face was the only movement I detected. She didn’t look like someone who could bounce back from even a small misstep in care. The risks of surgery,

I called the anesthesiologist in charge of the operating room schedule to ask about availability. If the cardiology department cleared her for surgery, he said, he could fit her in the following morning. I then called the on-call cardiologist to ask whether it would be safe to proceed. He hesitated. “I’m just covering,” he said. “I don’t know her well enough to say one way or the other.” He offered to pass on the question to her regular cardiologist.

A while later, he called back: The regular cardiologist had given her blessing. After some more calls, the preparations were made. My work was done, I thought. But then the phone rang: It was the anesthesiologist, apologetic. “The computer system,” he said. “It’s not letting me book the surgery.” Her appointment for heart imaging, which had been made before her kidney problems were discovered, was still slated for the following morning; the system wouldn’t allow another procedure at the same time. So I called the cardiologist yet again, this time asking him to reschedule the heart study. But doctors weren’t allowed to change the schedule, he told me, and the administrators with access to it wouldn’t be reachable until morning.

I felt deflated. For hours, my attention had been consumed by challenges of coordination rather than actual patient care. And still the patient was at risk of experiencing delays for both of the things she needed—not for any medical reason, but simply because of an inflexible computer system and a poor workflow.

Situations like this are not rare, and they are vexing in part because they expose the widening gap between the ideal and reality of medicine. Doctors become doctors because they want to take care of patients. Their decade-long training focuses almost entirely on the substance of medicine—on diagnosing and treating illness. In practice, though, many of their challenges relate to the operations of medicine—managing a growing number of patients, coordinating care across multiple providers, documenting it all. Regulations governing the use of electronic medical records (EMRs), first introduced in the Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009, have gotten more and more demanding, while expanded insurance coverage from the Affordable Care Act may have contributed to an uptrend in patient volume at many health centers. These changes are taking a toll on physicians: There’s some evidence that the administrative burden of medicine—and with it, the proportion of burned-out doctors—is on the rise. A study published last year in Health Affairs reported that from 2011 to 2014, physicians spent progressively more time on “desktop medicine” and less on face-to-face patient care. Another study found that the percentage of physicians reporting burnout increased over the same period; by 2014, more than half said they were affected.

To understand how burnout arises, imagine a young chef. At the restaurant where she works, Bistro Med, older chefs are retiring faster than new ones can be trained, and the customer base is growing, which means she has to cook more food in less time without compromising quality. This tall order is made taller by various ancillary tasks on her plate: bussing tables, washing dishes, coordinating with other chefs so orders aren’t missed, even calling the credit-card company when cards get declined.

Then the owners announce that to get paid for her work, this chef must document everything she cooks in an electronic record. The requirement sounds reasonable at first but proves to be a hassle of bewildering proportions. She can practically make eggs Benedict in her sleep, but enter “egg” into the computer system? Good luck. There are separate entries for white and brown eggs; egg whites, yolks, or both; cage-free and non-cage-free; small, medium, large, and jumbo. To log every ingredient, she ends up spending more time documenting her preparation than actually preparing the dish. And all the while, the owners are pressuring her to produce more and produce faster.

It wouldn’t be surprising if, at some point, the chef decided to quit. Or maybe she doesn’t quit—after all, she spent all those years in training—but her declining morale inevitably affects the quality of her work.

In medicine, burned-out doctors are more likely to make medical errors, work less efficiently, and refer their patients to other providers, increasing the overall complexity (and with it, the cost) of care. They’re also at high risk of attrition: A survey of nearly 7,000 U.S. physicians, published last year in the Mayo Clinic Proceedings, reported that one in 50 planned to leave medicine altogether in the next two years, while one in five planned to reduce clinical hours over the next year. Physicians who self-identified as burned out were more likely to follow through on their plans to quit.

What makes the burnout crisis especially serious is that it is hitting us right as the gap between the supply and demand for health care is widening: A quarter of U.S. physicians are expected to retire over the next decade, while the number of older Americans, who tend to need more health care, is expected to double by 2040. While it might be tempting to point to the historically competitive rates of medical-school admissions as proof that the talent pipeline for physicians won’t run dry, there is no guarantee. Last year, for the first time in at least a decade, the volume of medical school applications dropped—by nearly 14,000, according to data from the Association of American Medical Colleges. By the association’s projections, we may be short 100,000 physicians or more by 2030.

Some are trying to address the projected deficiency by increasing the number of practicing doctors. The Resident Physician Shortage Reduction Act, legislation introduced last year in Congress, would add 15,000 residency spots over a five-year period. Certain medical schools have reduced their duration, and some residency programs are offering opportunities for earlier specialization, effectively putting trainees to work sooner. But these efforts are unlikely to be sufficient. A second strategy becomes vital: namely, improving the workflow of medicine so that physicians are empowered to do their job well and derive satisfaction from it.

Just as chefs are most valuable when cooking, doctors are most valuable when doing what they were trained to do—treating patients. Likewise, non-physicians are better suited to accomplish many of the tasks that currently fall upon physicians. The use of medical scribes during clinic visits, for instance, not only frees doctors to talk with their patients but also potentially yields better documentation. A study published last month in the World Journal of Urology reported that the introduction of scribes in a urology practice significantly increased physician efficiency, work satisfaction, and revenue.

Meanwhile, there’s evidence that patients are more satisfied with their care when nurse practitioners or physician assistants provide some of it. This may be because these non-physicians spend more time than doctors on counseling patients and answering questions. In a perfectly efficient division of labor, physicians might focus on formulating diagnoses and treatment plans, with non-physicians overseeing routine health maintenance, discussing lifestyle changes, and educating patients on their medical conditions and treatment needs. Fortunately, over the next decade, employment of nurse practitioners and physician assistants in the United States is expected to grow by more than 30 percent; that compares with overall expected job growth of just 7 percent.

Yet the solution to health care’s labor problem isn’t simply to hire more staff; if not done right, that could make coordination even more cumbersome. A health-care organization’s success, in the years ahead, will depend on its success at delegating responsibilities among physicians and non-physicians, training the non-physicians to do their work independently, and empowering everyone—not just doctors—to shape a patient’s care and be accountable for the results.

Technology can make doctors’ lives easier, but also a lot harder. Consider the internet: It’s made information infinitely more attainable, but it takes time to find what one needs and to filter the accurate material from the inaccurate. The same goes for medicine. Technologies such as telemedicine, which allows for online doctor visits, can make health care more accessible and effective. But the use of EMRs, which is now federally mandated, is frequently cited as one of the main contributors to burnout. EMRs are often designed with billing rather than patient care in mind, and they can be frustrating and time-consuming to navigate. One attending doctor I know, tired of wading through a morass of irrelevant information, writes notes in the electronic chart but in parallel keeps summaries of his patients’ medical histories on hand-written index cards.

One can imagine a better EMR system, built around what health-care providers need. Today, in the absence of more effective tools, medical colleagues rely on email to coordinate patient care—or phone, as in the case of my kidney patient. But email chains can get buried in an inbox, and phone calls are rarely practical for coordinating between more than two people at a time. Neither mode of communication gets linked to a patient’s record, which means work is at risk of either getting lost or being replicated. But what if we were to integrate a tool into the electronic record that made clear what a patient’s active medical issues were, assigned responsibility to providers for overseeing those issues, and helped them to coordinate with each other? A dynamic EMR that didn’t just give physicians more information, but also helped them to prioritize, share, and act upon that information, would be far more useful than what currently exists.

As the world changes—as populations grow and technology advances—it is becoming essential that the workflow of medicine change alongside it. Fortunately for the patient with the failing kidney, the anesthesiologist was willing to get creative. Despite being unable to book the surgery, he unofficially reserved a slot for her and made the rest of his staff aware. The patient underwent the procedure the next morning, followed by her previously planned heart study. Everything worked out in the end. But I couldn’t help thinking: It shouldn’t be this hard to do the right thing.

SOURCE: https://www.theatlantic.com/health/archive/2018/05/the-burnout-crisis-in-health-care/559880/   

Charter on Physician Well-being

• 04/17/18 – Larissa R. Thomas, MD, MPH¹; Jonathan A. Ripp, MD, MPH²; Colin P. West, MD, PhD^3,4
• ¹Division of Hospital Medicine, Zuckerberg San Francisco General Hospital, and Department of Medicine, University of California, San Francisco School of Medicine, San Francisco
• ²Departments of Medicine, Geriatrics and Palliative Medicine, and Medical Education, Icahn School of Medicine at Mount Sinai, New York, New York
• ³Division of General Internal Medicine, Department of Medicine, Mayo Clinic, Rochester, Minnesota
• ⁴Division of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, Rochester, Minnesota
• 2018;319(15):1541-1542. doi:10.1001/jama.2018.1331

Dedication to serving the interest of the patient is at the heart of medicine’s contract with society. When physicians are well, they are best able to meaningfully connect with and care for patients. However, challenges to physician well-being are widespread, with problems such as dissatisfaction, symptoms of burnout, relatively high rates of depression, and increased suicide risk affecting physicians from premedical training through their professional careers. These problems are associated with suboptimal patient care, lower patient satisfaction, decreased access to care, and increased health care costs.

SOURCE: https://jamanetwork.com/journals/jama/article-abstract/2677478   

We really appreciated the perspective and heart shared by this wonderful NICU Nurse!

NICU Twins Born At Memorial Hospital West Reunite With Nurse Who Took Care Of Them For Five Weeks   Memorial Healthcare System  Publish ed on Jul 28, 2017   Maureen Laighold, RN in the NICU at Memorial Hospital West, reminisces with Jennifer and her daughters about the care they received from the Neonatal ICU team and the lifelong friendship they all now share.

WARRIORS:

Kat’s Corner     

Frustration, anger, insight and guided creativity, an undeniable need to contribute and a passionate love and concern for the Global Neonatal Womb (pre-term birth community) were the dynamics that birthed the Neonatal Womb Warriors blog in February, 2016. Here’s what happened…..

As my volunteer NICU experience progressed a NICU Nurse Manager approached me about joining the NICU Advisory Board as a volunteer and NICU Grad representative. After gaining more information about the purpose of Advisory Boards, I agreed to join the council and felt honored to be a part of this aspect of the NICU. I was informed that I was the  first NICU grad to serve on the Board. Initially, intimidated and awkward in the company of Medical Directors, Nursing, Physician, Resident and Therapist staff and parents who had children born in the NICU, I was mentored to provide appropriate input, to listen, learn and contribute. With the guidance of two important mentors I quickly understood the level of responsibility associated with serving on the Board and gained confidence to become more engaged in our monthly meetings. I also experienced tension from some of the staff and parents whom questioned my ability to contribute valuable input to our initiatives. Over time this dynamic transformed with some Board members, and I felt increasingly supported by the Mom’s serving on the board,  most of whom were also healthcare professionals. As both a NICU grad and child of a NICU parent I was very interested in learning from the mothers and medical providers on our council. There were no NICU fathers present on the Board at that time. The Board focused on the care and needs of the mothers and patients. The trauma experienced by the fathers/other parent, caregivers, and healthcare staff was not generally addressed.  After serving on the Advisory Board for a two-year period the Board underwent significant management changes, and new Federal regulations were being implemented for the management of Medical Advisory Boards nationwide. I was informed that my two year service on the Board was completed and would not be extended. Based on the fact I was neither a NICU parent or provider I was dismissed.

When one door closes , another opens

Have you ever felt agitated, inspired, empowered by a personal perception of injustice or disrespect?  I am the person who suffered the preterm birth trauma, and I am the recipient of the life-saving care provided by broad community efforts that kept me alive.  I am the adult survivor whose life is profoundly affected by the preterm birth experience. I have a Voice and I will be heard. The belief that because a person does not have language means that no experience took place is beyond antiquated and is completely false. The perspective that because the NICU or preterm birth baby survived is good enough in itself, and that the preterm birth experience ends at the conclusion of critical care is at best naïve, and at the worst, incomplete and destructive. My return to the NICU awakened me on a very visceral level to an ongoing need and opportunities for healing. Each patient, family member, disgruntled parent and provider I engaged with revealed that the opportunities for wellness did not end for community members when a baby was discharged.

My Mom and I had worked diligently to identify a platform for a foundation to contribute to the NICU/preterm birth community but found that the resources she had been denied as a NICU parent were increasingly developing and made available to NICU travelers locally. We searched to identify ways we could meaningfully contribute to the Neonatal Womb community despite the fact that we did not have great financial abundance. Shortly following my dismissal from the Board, we discussed the impact we felt the lack of wisdom, education, and common sense leading to the denial of the worth of the preterm birth grad perspective potentially had on the Neonatal Womb community, and how the support, well-being, and availability of healthcare providers also represented a serious exclusion.  We began to see how large the Community was as a whole and how many people worldwide shared the preterm birth journey, and noted that they were often not well connected or adequately supported. We continued to ask for guidance in our creative efforts to contribute. Late one night, my Mom was on her computer working when she was guided to consider starting a blog focused on representing the preterm birth grad community while identifying and including all community members. Although we really didn’t know what a blog was, we agreed to pursue this course of action with curiosity and openness in order to create for ourselves and others new perspectives for experiencing and understanding the preterm birth  journey globally while providing a Voice to the preterm birth survivors whom we call Neonatal Womb Warriors.

11% of the total human population are “Warriors”. Imagine how expansive our global Neonatal Womb community including all of our members is! Warriors,  OUR VOICES MATTER! Research, in the very early stages due to the recent and increasing survival rates of preterm birth babies, tells us that we may have healthcare concerns such as PTSD, heart, lung and other medical issues that may require attention as we age. Our lives are creating the need for more research and we serve as the foundational resource for providing research and for developing treatment.

I experience my fear of speaking-up at times as a call for healing within myself. Rejection, not being seen or valued hurts. Fear challenges us to choose Love. I am motivated to choose Love.  WARRIORS, stand with me! Together we can impact our personal journeys, influence NICU culture, shape the methods of care, push for new frontiers of Neonatal Developmental Research, and expand the healing of NICU Grads and those NICU Grads to come! We all have a unique story of hope that is of value to our Neonatal Community. We – YOU – deserve to be recognized!

Ofer Yakov : GoPro – Wet Dream – Costa Rica & Panama Published on Jun 23, 2016 –    “From the day I started surfing I knew it was a matter of time before I’ll fly for a surfing trip overseas. I met up with some good friends and we planned our first surfing trip together. Magical destinations were suggested and at the end we decided firmly: Costa Rica- Panama!”(Yakov, GoPro-Wet Dream,2016)