PARIS– The City of LOVE

                      FRANCE 

COMMUNITY

France’s preterm birth rate was 3.6 per 1000 (US was 6.1%) in 2010. France has played a critical role in the development of neonatal care globally.

 

                       Paris Maternité in 1881      Maternité Port Royall (Paris Maternité) 05/19/17

I (Kathy) was in Paris this week to attend a museum opening for an art exhibition (Medusa) where Kat’s brother (my son) Seth had work displayed, so we decided it was a good opportunity to explore our preterm birth family in France; an innovative, energetic and passionate global neighbor! While taking a break from the Art of French Bakeries, I visited the Maternite Port Royall on 05/19/17 where friendly staff were enthused and proud of their country’s historical contributions towards the development of neonatology.

In 1981, while the French were experiencing a falling birth rate, Dr. Stephane Tarnier developed the first closed incubator in a maternity ward at Paris Maternite. The incubator was based on those used in the care of chicken eggs. Dr. Tarnier helped convince other physicians that the treatment helped premature infants. In addition, and perhaps equally important, Dr. Tarnier advanced the concepts of isolation, hygiene, appropriate feeding, and provision of a warm, humid environment within the emerging field of neonatology. France became an early innovator in the development of medical care and technology for the preterm birth community. Now, as in 1881, birth rates in France are once again very low and the survival rate of all infants is of critical concern.

WARRIORS:

WHAT is an IMPERFORATE HYMEN?

(Wikipedia) An imperforate hymen is a congenital disorder where a hymen without an opening completely obstructs the vagina. It is caused by a failure of the hymen to perforate during fetal development. It is most often diagnosed in adolescent girls when menstrual blood accumulates in the vagina and sometimes also in the uterus. It is treated by surgical incision of the hymen.

Symptoms: Affected newborns may present with acute urinary retention.^[1] In adolescent females, the most common symptoms of an imperforate hymen are cyclic pelvic pain and amenorrhea; other symptoms associated with hematocolpos include urinary retention, constipation, back pain, nausea, and diarrhea

Pathophysiology: An imperforate hymen is formed during fetal development when the sinovaginal bulbs fail to canalize with the rest of the vagina.^[3] Although some instances of familial occurrence have been reported, the condition’s occurrence is mostly sporadic, and no genetic markers or mutations have been linked to its etiology.^[4]

Diagnosis: development.^[5] In adolescent girls of menarcheal age, the typical presentation of the condition is amennorhea and cyclic pelvic pain, indicative of hematocolpos secondary to vaginal obstruction. An imperforate hymen is usually visible on vaginal inspection as a bulging blue membrane.^[5] If hematocolpos is present, a mass is often palpable on abdominal or rectal examination. The diagnosis of an imperforate hymen is usually made based purely on the physical exam, although if necessary the diagnosis can be confirmed by transabdominal, transperineal or transrectal ultrasound.^[2]

An imperforate hymen can also be diagnosed in newborn babies and it is occasionally detected on ultrasound scans of the foetus during pregnancy.^[5] In newborns the diagnosis is based on the findings of an abdominal or pelvic mass or a bulging hymen.^[5] Examination of the normal neonatal vagina usually reveals a track of mucus at the posterior commissure of the labia majora; an absence of mucus may indicate an imperforate hymen or another vaginal obstruction.^[1]

A similar condition, cribriform hymen, is diagnosed when the hymen contains many minute openings.^[6]

Management: Before surgical intervention in adolescents, symptoms can be relieved by the combined oral contraceptive pill taken continuously to suppress the menstrual cycle or NSAIDs to relieve pain.^[7] Surgical treatment of the imperforate hymen by hymenotomy typically involves making cruciate incisions in the hymen, excising segments of hymen from their bases, and draining the vaginal canal and uterus.^[8] For affected girls who wish (or whose parents wish) to have their hymens preserved, surgical techniques to excise of a central flange of the hymen can be used.^[9] The timing of surgical hymen repair is controversial: some doctors believe it is best to intervene immediately after the neonatal period, while others believe that surgical repair should be delayed until puberty, when estrogenization is complete.^[10]

Complications: If untreated or unrecognized before puberty, an imperforate hymen can lead to peritonitis or endometriosis due to retrograde bleeding. Additionally, it can lead to mucometrocolpos (dilatation of the vaginal canal and uterus due to mucous buildup) or hematometrocolpos (dilatation due to buildup of menstrual fluid). Mucometrocolpos and hematocolpos can in turn cause urinary retention, constipation, and urinary tract infection.^[1]

Epidemiology: Imperforate hymen is the most common vaginal obstruction of congenital origin.^[1] Estimates of the frequency of imperforate hymen vary from 1 in 1000 to 1 in 10,000 females.

*** For additional information, see: https://en.wikipedia.org/wiki/Imperforate_hymen

Life is Sweet! Enjoy!      

KAT’S STORY           

Globally, approximately 1 out of 10 births (average) is preterm. As more preemies are surviving and mortality rates of preterm birth deaths are decreasing we, the Neonatal Womb community, with increased necessity, must expand our knowledge regarding the healthcare needs of the surviving preemie population. Through our blog we have shared information regarding brain development, psychological health, lung and heart health in young adult surviving preemies. Together, through cooperative efforts, communication, and research, we will discover and explore new areas of medical concerns, and develop the diagnostics, treatment, resources, and actions required to support the health and well-being of our preterm birth Warriors.

Warriors, we are Strong, and each of us is engaged in a unique journey. We can approach our medical, cognitive, psychological and related challenges with compassion, curiosity, progressive intent and positive action!  We can choose to be open and confident about exploring, discussing and sharing information regarding all of our health complications. Our ability to continue healing as preemie survivors is not limited to our discharge dates or our early medical revisitation appointments.  We have the power and the opportunity to help those who follow us down this preterm birth survivor path!

Today, I (Kat) want to share my experience and perspective regarding a congenital condition the medical community recommends may pose an above average risk to preterm birth female survivors. Imperforate Hymen effects between 1 per 1000 to 1 in 10,000 females in the general population. The condition itself and treatment are often considered controversial, even taboo subjects.  Although rates of imperforate hymen amongst premature females at this time are not yet well-researched, I know through my personal experiences that sharing information regarding the condition of imperforate hymen may provide essential support to preemie girls, preemie parents and other members of our Neonatal Womb community at large.

I am a 24-week gestation surviving twin who underwent open heart surgery without anesthesia at 3 ½ weeks of age while weighing 1 lb. and 3 oz. Following a medically challenging first year of life and lifesaving medical care from both allopathic and “non-traditional” caregivers, my health stabilized and I grew and generally developed as a healthy child. Growing up as a preemie survivor I first became aware of the effects of my preterm birth when I started playing biddy-sports at age 3. I was much smaller in stature than most other kids. My mother didn’t let that hold me back from experiencing life and performing activities like any other fully functioning child. I enjoyed good health and well-being until I reached puberty.

After starting my first menstrual period at age 11 yrs., I experienced heavy bleeding and  periods lasting from 7 days to over a month long. Initially I thought I had inherited these symptoms from my family. The women in my family had tipped uteruses and their periods usually lasted about seven days. However, unlike my family, I was not able to use tampons, as my body did not accommodate them, and I had to settle for using sanitary pads. I sensed that this was due to some factor related to my prematurity, but was provided with no medical explanation. As an active high-school athlete, a 3-sport varsity captain, and a select basketball player the inability to use tampons was extremely frustrating, inconvenient, and socially “different”. My inability to use tampons troubled me, and my personal confidence declined. Though not necessarily planning to be sexually active as a teen, I also didn’t feel sexually appealing or desirable to a potential partner. As a hetero-identified female, I questioned who would want to deal with a girl unable to function sexually even if she wanted to someday? I believed that I had no reason to pursue romantic or sexual interests. This included the common teenage innocence of excessive kissing. In addition, I didn’t want the stress of needing to explain myself for a condition I wasn’t even fully aware of in the first place. I worried about being bullied if anyone found out about my “secret”.   Therefore, I made the personal choice to stay away from dating all together.

When I turned 17 years of age I received my first gynecological exam. It was at that appointment I was diagnosed with an imperforate hymen. My family practice doctor referred me to a specialist who sent me to a surgeon. In pre-op, I learned that my hymen was significantly malformed and that sexual intercourse with my condition would have posed the potential threat of severe pelvic and vaginal damage, excessive to fatal bleeding, and possible harm to a male partner. I had already made it past the incubators and intubation. I didn’t want to risk death by sex! Shortly thereafter, I underwent surgery (hymenectomy) to correct this congenital disorder.

According to the Journal of Gynecology a hymenectomy…“typically involves making cruciate incisions in the hymen, excising segments of hymen from their bases, and draining the vaginal canal and uterus. For affected girls who wish (or whose parents wish) to have their hymens preserved, surgical techniques to excise of a central flange of the hymen can be used.”  

My surgery produced immediate positive results. Following a few days of post-op pain, I felt relieved, empowered and normal! I was back to enjoying my daily activities and I cherished the freedom to finally use tampons!  My sexual confidence increased knowing choices related to my sexual health were now under my control.  I was able to look forward to experiencing important aspects of wellness that a healthy sex life and romantic partnership may offer. This chapter in my life journey had a happy ending.

With heartfelt  resolve, great respect and with appreciation we are asking that our Neonatal Womb Partners including Global, National and Community preterm birth advocacy programs/ organizations, healthcare and preemie family partners, researchers and scientists, and our funding sources contribute and work together with our Warrior community to educate our global family regarding the condition of imperforate hymen as a potential COMPLICATION to preterm birth survivors. Together we can reduce the risks of injury, even death, increase preemie survivor wellness, reduce medical costs, and collectively build Community confidence in our efforts to build and sustain the health and wellness of our Neonatal Womb family. Our efforts will need to be situationally sensitive to cultural perspectives, and treatments may vary accordingly. We believe increasing our dialogue around this topic will lead to a greater understanding of the possible health risks and complications premature girls and women with this congenital disorder may experience.  As a reader of this blog, you have information that could transform, even save, a life!  THANK YOU!

 

HEALTH CARE PARTNERS

Preterm Birth Therapists play a crucial and expanding role in the care and development of preterm birth survivors. In the National Association of Neonatal Therapists article 3 Ways to Improve Your Communication in the NICU Therapist Sue Ludwig provides ideas to improve communication within our Neonatal Womb community. NANT connects and serves neonatal occupational therapists, physical therapists, and speech-language pathologists. Recognizing eye contact vs the “glaze”, limiting negative effects of too many words, and recognizing the expressions of sensory input can significantly enhance communication. For example, the glaze aversion coming from a preterm birth baby (and us as well) is a sign of stress. Ms. Ludwig writes “How do you know if you’re using too many words? Look in their eyes. Your colleagues, the attending, your spouse, the NICU parent, your kids. You know the look. The one where no one is present in those eyes anymore. They’ve stopped taking in information”.

Enter here for the full article: http://neonataltherapists.com/?s=3+ways

 

Web camera use in NICU Units provides families with a priceless and empowering resource that allows families and friends to share “time” with the NICU baby.  Web cameras create a safe opportunity for the extended family to connect with the infant and to understand the dynamic and complex journey of the preterm birth family. But how does the Web Camera effect our health care provider staff and how can we support staff with respect to this expanding technology? The abstract cited below considers this important issue……

Clinical Medicine and Research (March 14, 2016)

Web Camera Use in the Neonatal Intensive Care Unit: Impact on Nursing Workflow (Abstract)

Background

Many neonatal intensive care units (NICU) are using web camera systems to allow virtual visitation of the infant by family members. Generally, families appreciate the web camera and utilize this service. However, no one has looked into the change on nursing workload after implementation of a web camera.

Objective

This study was designed to explore the perception of nurses and their workflow and identify determinants that may disrupt or facilitate the use of a commercially available camera service. Our primary goal was to see if the camera system interferes with the nursing care.

Summary

Over time, as nurses had more exposure to caring for an increasing number of infants on camera, the perception of the service was viewed as beneficial. Findings in this study also showed that simultaneously caring for multiple infants while using the web camera increased nurses’ workload and stress, which they perceived as having an adverse effect on quality of infant care. Therefore, to allow the nurses to compensate for these disruptions, we would recommend increasing awareness of the potential issues with both cameras and families, multiple training sessions to the nursing staff before the systems are implemented”.

Full Article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851448/

 

• The Third Neonatology Association Conference
• Lyon, France July 07-09, 2017
• https://medtube.net/events/show/4100/the-3rd-international-neonatology-association-conference-inac-2017

 

PREEMIE FAMILY PARTNERS

Global family members with access to NICU care are experiencing increased support through the availability of new technologies that allow them to increase their opportunities to bond with the preterm birth baby and to safely share the NICU/preterm birth experience with friends and family. The benefits of having access to webcam technology during the NICU experience is priceless, and we wish all our preterm birth families had access to webcam or similar technologies. Travel into the webcam experience through the YouTube below:

NicView – The NICU Camera System

FINANCES and Preterm Birth Families: Preterm birth may really challenge family finances in numerous ways and associated financial needs can feel overwhelming. Please talk to your Social Worker or a similar advisor (if one is available to you) to better understand and access local resources, and consider connecting with preemie support groups in your community to gain ideas and identify helpful resources to help you through this challenging time. The dynamics of resource availability are unpredictable when political climates change or are in transition, so contacting the appropriate agencies in a timely manner will help you identify assistance and may lead you to new, additional/alternative resources.

Baby Center provides the following resource list to consider for assistance.

Financial Assistance: 7 sources of financial help for you and your preemie

The article states” Parents of preemies often qualify for help from the government and private agencies. Your NICU’s social worker can help you find the right program for you and help you apply (as early as possible).  Consider your needs and these resources as you navigate the financial challenges of being a NICU parent”. The article will provide you with specific information regarding the following 7 resources:

• – SSI (Supplemental Security Income)
• – Medicaid
• – WIC
• – Ronald McDonald Houses
• Hospital Grade Breast Pumps
• Tax Deductible Expenses
• Free Parking

Please see the full article: https://www.babycenter.com/0_7-sources-of-financial-help-for-you-and-your-preemie_10371026.bc

INNOVATIONS

COLLABORATION! “None of us, including me, ever do great things. But we can all do small things, with great love, and together we can do something wonderful.” – Mother Teresa

Rice University 360° Institute of Global Health and Queen Elizabeth Central Hospital successfully collaborated to advance preterm birth care in Malawi.  Rice 360° NEST works with team partners University of Malawi College of Medicine, Northwestern School of Management, University of Malawi Polytechnic and London School of Hygiene and Tropical Medicine to create Newborn Essential Solutions and Technologies. Rice University 360° has been named a Semi-Finalist in the MacArthur $1 million Grant Competition (winner pending). The seed for Gogo Chatinkha was initiated through a $100,000 grant donation from Rice University staff.

A Breath of Hope

 The new Neonatal Ward in Malawi opened June 29, 2016 at the Queen Elizabeth Central Hospital in Blantyre, Malawi (Southeastern Africa).  The Rice Newsletter (Winter, 2017) states “In a country where statistics say it will be 150 years before a baby born in Africa has the same chance of survival as one born in North America, Gogo Chatinkha is as step towards giving every child born a chance for survival”. The satisfaction of effective collaborative work and the excitement of this life-sustaining community healthcare resource is joyously expressed in the video that follows:

 

We want to SHOUT OUT    to all of the technology, science-centered, resource provider, and diverse global contributors and funding donors who represent an essential component of our preterm birth family! Without you we would not be able to manifest the great and challenging advances needed in our community at large! Your efforts integrate into every aspect of our community and we are GRATEFUL!

             SURFING        

French River Surfing – Just Like They Drive! And, of course, it WORKS and is SO FUN!  ENJOY!