Ideal; Preemie Life Course

Uzbekistan, officially the Republic of Uzbekistan, is a double-landlocked country in Central Asia. It is surrounded by five landlocked countries: Kazakhstan to the northKyrgyzstan to the northeastTajikistan to the southeastAfghanistan to the southTurkmenistan to the south-west. Its capital and largest city is Tashkent. Uzbekistan is part of the Turkic languages world, as well as a member of the Organisation of Turkic States. While the Uzbek language is the majority-spoken language in Uzbekistan. Islam is the predominant religion in Uzbekistan, most Uzbeks being Sunni Muslims.

Uzbekistan is a secular state, with a presidential constitutional government in place. Uzbekistan comprises 12 regions (vilayats), Tashkent City and one autonomous republic, Karakalpakstan. While non-governmental human rights organisations have defined Uzbekistan as “an authoritarian state with limited civil rights”, significant reforms under Uzbekistan’s second president‘s administration have been made following the death of the first president Islam Karimov. Owing to these reforms, relations with the neighbouring countries Kyrgyzstan, Tajikistan and Afghanistan have drastically improved. A United Nations report of 2020 found much progress toward achieving the UN’s sustainable development goals.

In the post-Soviet era, the quality of Uzbekistan’s health care has declined. Between 1992 and 2003, spending on health care and the ratio of hospital beds to population both decreased by nearly 50 percent, and Russian emigration in that decade deprived the health system of many practitioners. In 2004 Uzbekistan had 53 hospital beds per 10,000 population. Basic medical supplies such as disposable needlesanesthetics, and antibiotics are in very short supply. Although all citizens nominally are entitled to free health care, in the post-Soviet era bribery has become a common way to bypass the slow and limited service of the state system. In the early 2000s, policy has focused on improving primary health care facilities and cutting the cost of inpatient facilities. The state budget for 2006 allotted 11.1 percent to health expenditures, compared with 10.9 percent in 2005.


Rank: 118  –Rate: 8.7%   Estimated # of preterm births per 100 live births 

(USA – 12 %, Global Average: 11.1%)

The World Community has experienced increased chaos and stress these past few years, and our community members further impacted by war and climate disasters face escalating healthcare disparity and preterm birth influences. Access/exposure to media provides the opportunity to see for ourselves the challenges our Neonatal Womb Warrior/Preterm Birth community members face globally.  We have the ability to impact change. No matter how big or small our efforts seem, each and every effort to provide support and manifest positive change is both acknowledged and appreciated. Thank you. Kathy and Kat.

We need to talk about prematurity

São Paulo Ambulatory in Brazil carries out pioneering work in nurturing care for preterm infants.

By Emilia Afrange  Last updated: October 6, 2021 Date created: September 24, 2021

                                   International Psychology

The issue of premature births is a global and growing public health concern. Stressing its importance, the United Nations Sustainable Development Goals aim to reduce the rate of global maternal mortality to less than 70 deaths per 100,000 live births by 2030 (United Nations, 2015).

Prematurity is the main cause of neonatal mortality (children up to 28 days old) and infant mortality (children under 5 years old) worldwide and a relevant cause of serious morbidity, associated with long hospital stays in the Neonatal Intensive Care Unit (World Health Organization, 2019)

The sequelae of prematurity are not limited to the period immediately after birth. Premature birth survivors can face adverse health consequences throughout their lives, creating a significant burden for their families and society. Coming into the world before 37 weeks of gestation, or even earlier, can determine the baby’s biopsychosocial development, since biological birth and psychological birth do not coincide (World Health Organization, 2019)

Premature births are a serious issue in Brazil

“Born in Brazil” is a national survey on labor and birth, coordinated by the Sergio Arouca National School of Public Health (ENSP), linked to the Oswaldo Cruz Foundation (Fiocruz). The survey reveals that the rate of prematurity in the country reached 11.5%, almost twice the rate observed in European countries, with 74% of these babies being late preterm (between 34 and 36 weeks of gestation).

More recent information (2014), from the Information System on Live Births (Sinasc) and the Ministry of Health, indicate a prematurity rate in the country corresponding to 12.4% of live births. According to the general coordinator of the study, Maria do Carmo Leal, PhD, “prematurity is the biggest risk factor for the newborn to get sick and die, not only immediately after birth, but also during childhood and adulthood. The damage goes beyond the field of physical health and reaches the cognitive and behavioral dimensions, making this problem one of the greatest challenges for contemporary public health” (Oswaldo Cruz Foundation, 2011/12).

Between October 2016 and June 2019, the Brazilian Association of Parents, Families, Friends and Caregivers of Premature Babies (2019) conducted a survey with 2,900 families of premature babies. The objective was to identify possible actions to provide benefits to aid families with premature babies in the country.  Among the results, it was highlighted that the average period of hospitalization of premature babies in the NICU was 51 days; 63.7% of the babies were hospitalized for more than 60 days and 26% of them stayed between two and five months.

Care for infants born prematurely and their families in Brazil

In the city of São Paulo (SP), the Preterm Outpatient Clinic of the Escola Paulista de Medicina (EPM), of the Federal University of São Paulo (Unifesp), is a national reference in the care of children and adolescents born preterm. Since its foundation, in 1981, it has followed an efficient nurturing care model.

We work with four affiliated hospitals (Hospital São Paulo, Hospital Municipal Vereador José Storopolli, Hospital Estadual de Diadema e Hospital Geral de Pirajussara), which together register approximately 800 premature births/month. Currently, around 900 children and adolescents are being monitored at the Ambulatory. The Premature Clinic offers medical and multidisciplinary care to children and adolescents born prematurely until they reach 20 years of age.

Children born prematurely also receive support for medical treatment, and their families receive social assistance aiming at improving their health and quality of life from the ‘Instituto do Prematuro – Viver e Sorrir,’ founded in 2004 and, since then, a partner of the Clinic (Instituto do Prematuro, 2018).

Children born prematurely and their families also require psychological support. In 2007, the Psychology area at the Premature Outpatient Clinic was created, a unique experience in Brazil. A team of psychologists and psychotherapists support the psycho-emotional health of the premature baby and the mother/caregiver, stimulating the physical and emotional development of the infant, aiding the construction of the loving and empathetic mother/child bond, and supporting the multidisciplinary team helping the family.

Incoming patients are first separated into Operational Groups to address common themes that aim at the psychic expansion, e.g., narrating their anguishes and difficulties while discovering ways of dealing with them – sometimes even in a playful and grateful way. The Operational Groups are as follows:

  • Guidance Group with mothers and children from 0 to 3 years old.
  • Operational Group of mothers and children from 4 to 7 years old.
  • Operational Group of mothers and children from 8 to 10 years old.
  • Operational Group with teenagers.
  • Operational group of caregivers.

Psychological interventions are then created, which can consist of:

  • Psychological screening to verify the patient’s needs and to which type of care s/he should be referred.
  • Individual psychological care.
  • Play therapy.
  • Psychiatric referral.
  • Group service.

Periodically, meetings are held with the specialists from the Outpatient Clinic and with the EPM resident physicians, in order to promote the quality and improvement of the therapeutic practice, according to the modules created by the physician and psychoanalyst Michael Balint, MD, MS (1984).

In this way, we are able to provide an innovative system of psychological support to address the needs of children born prematurely and their families.


Improving mother and child health in Aral Sear are: Baby Gulnara’s story

UNICEF Uzbekistan-  03 February 2022

Gulnara was born after only 30 weeks of gestation. She weighed just 1,000 grams. After two months in an incubator at the Neonatal Intensive Care ward of the Nukus City Perinatal Center, she weighs 2.450 kilograms.

Gulnara’s mother was admitted with a history of miscarriage. She suffered from multiple health conditions which led to premature labor. The head of the department, Dr. Kahramon Kabulov, who performed an emergency cesarean section to assist with Gulnara’s birth, explained that Gulnara would have had slim chances for survival just a few years before. Thanks to the up-to-date, evidence-based advanced newborn care resuscitation protocols recommended by WHO and UNICEF, and the latest equipment and upgraded infrastructure, maternity staff can now save Gulnara and the other babies who are born preterm.

In 2019, within the framework of the ‘Improving Quality of Perinatal Care Service to Most Vulnerable Mothers and Newborns’ Programme, UNICEF and UNFPA had assisted three perinatal facilities in Karakalpakstan (in Nukus City, Kungrad, and Beruniy) to enhance the capacity of neonatologists, obstetricians, and resuscitation specialists to strengthen staff capacities, through comprehensive training and support. UNICEF and UNFPA have also equipped the perinatal center’s new Neonatal Intensive Care Unit with the latest medical equipment such as ventilators, oxygenators, laryngoscopes, and training equipment. Today all premature babies that come through the perinatal center have a real chance of survival.

At the Neonatal Intensive Care Unit, little Gulnara is getting better every day. She can now see lights and hear sounds and uses her strength to drink her mother’s breastmilk. Once she reaches 2.5 kilograms, she will be released to go home. Her parents have been trained on how best to care for her and are looking forward to her arrival at home.

UNICEF and UNFPA significantly contributed to the Government’s efforts to improve the quality of perinatal services in the Kungrad and Beruniy districts and Nukus City. Since the project started, 21% of all mothers and newborns in Karakalpakstan (more than 12,000 mothers and 12,000 newborns) have benefited from upgraded infrastructure and improved quality of care at the target perinatal centers.

A significant reduction in early neonatal mortality has been achieved in all three target facilities on average by 22%. It is expected that the target perinatal centers will extend their specialized service to mothers and newborns from the neighboring districts.


Keeping up with technology and terminology ….. Next up: Deep Learning

What is Machine Learning?

822,603 views – Aug 24, 2017 Google Cloud Tech

Got lots of data? Machine learning can help! In this episode of Cloud AI Adventures, Yufeng Guo explains machine learning from the ground up, using concrete examples.

Ziyoda va Ulug’bek Rahmatullayev – Tor ko’cha

835,425 views              Jan 3, 2022

Gravens By Design: What the Ideal NICU Would Look Like

Robert D. White, MD Director, Regional Newborn Program Beacon Children’s Hospital

It is sometimes hard to imagine the ideal NICU – the concept is still evolving, so there is no one available to visit, and even the elements of what could be optimal are evolving. For example, if this exercise were undertaken a few decades ago, it would be difficult to imagine what the digital transformation might permit – and even now, we cannot predict its full potential. Still, the effort seems worthwhile, not only for those who will soon be building a NICU that will have to meet the needs and expectations of its inhabitants for the next 20-30 years but also for those who cannot rebuild soon but could undertake an interim facelift that would be of value to all its constituents.

A NICU should be welcoming to families.

 This concept has many elements, starting even before one enters the hospital doors. It is usually easy to find the hospital, especially in the digital age, but there are often many places to park and enter the massive complex where most higher-level NICUs are located. Few people will say that finding their way from the street to the NICU is easy; it is hardest for young parents or other family members coming from an outlying community – often at night and almost always under stressful conditions. Proper signage on the street, at the preferred entrance, and through the hallways can greatly facilitate this first encounter. Written directions, both on paper and a hospital website, can also be helpful and allay anxiety even at the start of the journey.

Many hospitals have a foreboding “front door” because of where they are located, how old they are, and their restrictions to entry, but once one reaches the entrance to the NICU, none of these should be factors. The entrance should be well-lit with an attractive color scheme and devoid of stern signage. An individual to welcome and direct families and visitors should always be available. The décor should have more in common with a hotel lobby than an ICU – spacious, relaxing, and, where appropriate, informative. Both signage and artwork should reflect the diversity of cultures served by the NICU and should address parents as members of the care team rather than as visitors.

This paper is not intended to explore the operational aspect of the ideal NICU, but these are immensely important to how families can be made to feel welcome. I have vivid memories of an old NICU in Madrid where several mothers sat in a circle rocking their premature infants while talking and singing together – a stark contrast to most similar NICUs in much wealthier countries I have seen that were largely devoid of parents and dominated by the sights and sounds of technology. The Madrid parents were made to feel welcome not by the physical environment but by the policies of the NICU, and they, in turn, made it more welcoming to every new family.

The NICU should only separate babies from their parents under the most extreme circumstances.

 There is now abundant evidence of the value of early and extensive intimate contact of a baby with its parents and the safety of single-family rooms. There is no evidence that separating babies from their mothers for extended periods in the first days of life benefits either baby or parent. The ideal NICU would provide space and caregivers for all mothers after their delivery except for those who require highly specialized care. Likewise, accommodation would be provided for fathers or other support persons that will be sufficient for their comfort over extended periods.

A NICU should present sights and sounds to all inhabitants that are nurturing rather than stressful.

There was a point in the early NICU days when audio alarms and bright lights were imperative, but we have known how to minimize these stressors for decades now. Most alarms can be transmitted electronically and visually, a technique learned in every other part of the hospital and adopted in some NICUs as early as the 1980s but has only recently achieved widespread acceptance and is still not a reality for some NICUs. Similarly, there was a time before the advent of transcutaneous oximetry when constant bright lights were needed to assess skin color and perfusion. However, the pendulum swung to a constantly dim environment based on the premise that this was the expected environment in utero and, therefore, safer and less stressful for premature infants. This belief has persisted long after it was disproven (1); it is past time for the pendulum to swing back to a middle ground where babies are presented with a circadian rhythm for lighting while still protected from direct light sources.

Adult caregivers and families need appropriate lighting as well. Lighting should be of sufficient intensity and the proper spectrum to provide a circadian and alerting stimulus for caregivers (2) and a welcoming signal to families. In contrast, lighting levels and spectrum at night will minimize melatonin suppression in caregivers while still supporting alertness.

Daylight and views of the outside world and nature provide a substantial psychological benefit to many adults. However, most NICUs will not have an opportunity to improve access to these features until new construction occurs because of the misguided belief in past years that because babies did not need access to daylight, their caregivers and families did not need it either. The ideal NICU will provide windows in almost all spaces where adults spend extended periods during the day. Even hallways should have a window on at least one end rather than closing off that vista by making an office a little larger or for storage space. In the meantime, attention to the visual environment remains even more important. The walls of NICUs have the potential to be palettes conveying subtle messages through artwork, photos, and stories of NICU grads. Even ceilings and floors have been used creatively to provide additional opportunities for the eye to find the color, whimsy, distraction, and information.

Sound control has been difficult to achieve in many NICUs, even after monitor alarms were tamed. For many NICUs, there are still too many sources of noise and too few sound-absorbing surfaces. There are now alternatives to the hard flooring that transmits and reflects the sound of everything that moves across it, for example. All surfaces should absorb more noise than they generate. HVAC systems were often designed in an era when high airflow was recognized as valuable but not understood as an important source of ambient noise, above which all other desirable sounds such as voices and even monitor alarms must be heard. Design or redesigning these HVAC systems to be quiet and where air can be extensively cleaned and filtered are overdue for many NICUs.

Infection control can be improved in most NICUs.

Nosocomial infection continues to be a frustratingly common complication of neonatal intensive care. Something as basic as a handwashing sink is often designed to fail and, even when welldesigned, can be misused in a way that contributes to ongoing contamination of NICU surfaces. The ideal NICU will have sinks readily accessible in all patient care and support areas; these sinks should be hands-free, large enough for cleaning hands and forearms, have drains that are offset from the faucets, rims that do not permit objects to be placed on them (and thereby contaminated), splash guards to protect adjacent areas from splatter, quiet paper towel dispensers, and should be handicapped-accessible.

Among new sanitizing techniques being explored, ultraviolet light in the UV-C spectrum has been demonstrated to reduce bacterial and viral presence in circulating air and on certain devices, including hand-held communication devices. There is also increasing evidence that UV-A can be used to reduce contamination of surfaces in occupied spaces (3).

Support spaces should provide respite and support for families and caregivers.

In many NICUs, support spaces for caregivers and families are cramped and windowless. These spaces would be large and relaxing in the ideal NICU with abundant daylight and access to an outdoor garden. Likewise, there would be smaller individual spaces that provide privacy and an opportunity to nap, pray, exercise, or do yoga.

The patient care space should be a home away from home for those families who desire it and those babies for whom it is appropriate.

This principle comes with qualifiers. Babies whose families rarely interact with them may benefit from being in a shared space with other such babies. A few families prefer being in a space where their baby can be easily seen by caregivers, although this often is based on a misunderstanding of how little we can tell about a baby when we are not directly at the bedside and how much we depend on monitors to provide us information about a baby’s status. Most families, though, appreciate a space they can call their own with comfortable seating, a private sleep surface and shower, a refrigerator, and the opportunity to personalize the space with decorations suitable for the baby and the season. Even in a more open setting, parents should have the opportunity for privacy, especially for breastfeeding and skin-to-skin care and space to store their personal belongings.

The ideal NICU should look better than the day it opened.

To some extent, this is an unreachable goal – walls will get nicked, floors will get stained, equipment will look worn. However, accumulating items in hallways and on counters and signs taped to walls or doors is not inevitable. Instead, it is tolerated mainly by people who get desensitized to its presence and forget that for families in this crucial moment, it announces a lack of attention to details and cleanliness that we would not tolerate in other public venues or indeed in our own homes if we were expecting visitors. It is a rare NICU that cannot find ways to enhance its appearance from time to time with upgrades as mundane as light bulbs with a warmer spectrum or as heart-warming as a piece of art from a graduate or the child of a staff member. Likewise, if allowed, families and staff can transform a patient care area from a sterile medical unit to something that feels more like home.


The proactive approach to mother-infant dyads at 22-24 weeks of gestation: Perspectives from a Swedish center

Johan Ågren    Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden


The care of infants born at the lowest extreme of gestation requires dedication, skill, and experience. Most centers apply a selective approach where intensive care at these gestational ages is being offered to a varying proportion of infants depending on the views and experiences of the medical community, the individual physician, and the parents. Consequently, the outcomes differ dramatically with survival rates at 22-23 weeks ranging from 0 to greater than 50%. This paper presents the approach in a center with a long tradition of providing a comprehensive and uniformly active care to all mother-infant dyads from 22+0 weeks of gestation. Important features outlined include prenatal maternal referral and transfer, delivery room management, and initial intensive care.

Full Article/PDF:

Thin Endometrium, PCOS, and Risk for Preterm Birth, Low Birthweight Infants

Jessica Nye, PhD – January 26, 2022

Women underwent controlled ovarian stimulation using gonadotropin-releasing hormone (GnRH) agonist, GnRH antagonist, or progestin for pituitary suppression. Hormone therapy cycle or ovulation induction cycle for endometrial preparation. 

Among pregnant women with polycystic ovary syndrome (PCOS), decreased endometrial thickness (EMT) was associated with increased risk for preterm birth (PTB), low birthweight (LBW), and small-for-gestational age (SGA) infants. These findings were published in Frontiers in Endocrinology.

Health records of women (N=1755) who had PCOS and a singleton livebirth after frozen-thawed embryo transfer (FET) between 2009 and 2019 at the Shanghai Ninth People’s Hospital in China were retrospectively reviewed for the study. Prior to pregnancy, the women underwent controlled ovarian stimulation using gonadotropin-releasing hormone (GnRH) agonist, GnRH antagonist, or progestin for pituitary suppression. All women underwent hormone therapy cycle or ovulation induction cycle for endometrial preparation.

Of the entire cohort of 1755 women with PCOS, 10.5% had EMT of £8 mm, 78.6% had EMT of >8-13 mm, and 10.9% had EMT of >13 mm EMT.  The 3 EMT categories were classified as “thin”, “intermediate” and “thick”, respectively, for this study. Patients in these 3 EMT cohorts were aged mean 29.9±3.3, 30.0±3.5, and 30.1±3.5 years; body mass index (BMI) was 23.44±3.70, 23.45±3.85, and 24.02±4.26 kg/m2; and 37.5%, 29.6%, and 25.0% had PCOS without any other fertility issues, respectively.

The patients differed significantly for gravidity and endometrial preparation regimen (both P <.001) among the thin, intermediate, and thick EMT categories. No significant differences in pregnancy complications were found on the basis of maternal age, BMI, parity, or other factors.

For neonatal outcomes, thin EMT associated with increased PTB (13.6% vs 9.3% vs 3.6%; P =.003), lower birthweight (mean, 3260.1 g  vs 3314.6 g vs 3443.3 g; P =.004), LBW (9.2% vs 5.6% vs 2.1%; P =.010), lower birthweight Z-score (mean, 0.33 vs 0.39 vs 0.61; P =.006), and SGA (9.2% vs 4.3% vs 1.6%; P =.001) compared with the intermediate and thick EMT cohorts, respectively.

Using multiple logistic regression models for the same 3 groups, researchers discovered that a 1 mm decrease of EMT led to a 9% decrease ([adjusted odds ratio] 1.09, 95% CI, 1.00-1.19, P = .053), 14% ([aOR]1.14, 95% CI, 1.02-1.38, P=.002), and 22% ([aOR]1.22, 95% CI, 1.07-1.38] P= .003) led to a greater likelihood of developing PTB, LBW, and SGA, respectively.

Researchers acknowledged their study was limited by not adjusting for variants of PCOS or metabolic patterns before pregnancy. Only frozen-thawed embryo transfer (FET) cycles were included in the analysis, so generalization of the study findings should be done with caution.

“Our study demonstrated that decreased EMT was an independent risk factor for PTB, LBW, and SGA in PCOS,” the researchers concluded. “This novel finding suggests that EMT may be applied as a simple indicator of neonatal complications among women with PCOS.”


Huang J, Lin J, Xia L, et al. Decreased endometrial thickness is associated with higher risk of neonatal complications in women with polycystic ovary syndrome. Front. Endocrinol. 2021;12:766601. doi:10.3389/fendo.2021.766601

Thin Endometrium, PCOS, and Risk for Preterm Birth, Low Birthweight Infants – Endocrinology Advisor

Health Equity and Cultural Competency in the NICU: Challenges and Solutions

Jan 28, 2021 National Association of Neonatal Nurses

In this Bonus General Session from 2020 NANN Virtual, Jenne Johns, MPH, takes listeners through an educational and empowering journey to encourage the delivery of high quality and equitable care to all preemie families, regardless of race, language, and socioeconomic status.

We are excited to see the emphasis and progression of efforts towards developing and conducting research that may build a foundation for understanding and addressing the unique needs of preemies as they navigate their FULL life journeys.

Addressing Preterm Birth History With Clinical Practice

Recommendations Across the Life Course

Michelle M. Kelly, PhD, CRNP, CNE, Jane Tobias, DNP, CPNP-PC, & Patricia B. Griffith, MSN, CRNP, ACNP-BC


Preterm birth is defined as birth before the completion of 37 weeks of gestation (World Health Organization, 2018). Worldwide, preterm birthrates range from 5% to 18% (Synnes & Hicks, 2018), and two-thirds of all preterm births occur without an identifiable cause (Ferrero et al., 2016). Over the past decade, despite increased attention to perinatal management, the United States’ preterm birthrate hovered steadily at just below 10% (Martin, Hamilton, Osterman, Driscoll, & Drake, 2018). Advances in perinatal and neonatal management such as prenatal steroids, exogenous surfactant, and advanced respiratory management resulted in preterm birth survival rates in developed countries of 90% to 95% (Philip, 2005; Raju, Buist, Blaisdell, Moxey-Mims, & Saigal, 2017a).

Stable preterm birthrates and high survival rates combine to ensure that preterm born infants will reach adolescence and adulthood in significant numbers such that every health care provider, regardless of specialty, is caring for a patient who was born preterm.

Long-term health outcome research of preterm birth survivors has shown that preterm birth has implications for individual health throughout the life course (Raju et al., 2017a). The National Institutes of Health in The Adults Born Preterm: Epidemiology and Biological Basis for Adult Outcomes (Raju et al., 2017b) calls for an increase in awareness of and education for health care providers regarding the long-term health outcomes of preterm birth survivors. Health care providers report limited knowledge and training related to preterm birth survivors’ life course outcomes (Kelly & Dean, 2017; Luu, Rehman Mian, & Nuyt, 2017; Raju et al., 2017b). Limited content addressing preterm birth survivors’ life course health outcomes is evident in commonly used pediatric-focused textbooks (Kelly & Michalek, 2019).

Current recommendations from the American Academy of Pediatrics, specific to children born preterm, focus on the immediate newborn period and the high-risk infant referral to developmental follow-up (American Academy of Pediatrics Committee on Fetus and Newborn, 2008). Most preterm births occur between 32 and 36 weeks of gestation and subse- quently require limited neonatal intensive care unit (NICU) intervention and are often discharged without significant peri- natal complications. Therefore, many children born preterm are not included in high-risk developmental follow-up pro- grams and are not deemed appropriate for early intervention.

Problem Statement

No formal recommendations or guidelines exist regard- ing preterm birth implications across the life course despite the proliferation of long-term outcome research published in the last decade and the National Institutes  of Health call for increased attention to an individual’s preterm birth history (Raju et al., 2017b). Just as obesity was identified as a risk for coronary artery disease in 1998 (Mitchell, Catenacci, Wyatt, & Hill, 2011), it is time for the health care community to recognize preterm  birth history as an independent risk for developmental and educational success, as well as noncommunicable cardiovascular and respiratory diseases. Recommenda- tions for addressing preterm birth  history  throughout the life course are essential to improving health care pro- vider knowledge, and through their implementation, improving the health of those born preterm.

Following an extensive review of the literature (Kelly & Griffith, 2020a; Kelly & Griffith, 2020b), a set of recommendations for pediatric and adult primary care providers were developed that incorporate findings from national and international meta-analyses, systematic reviews, executive summaries, and professional guide- lines. There is no specific phenotype of the individual born preterm; however, those born preterm experience common chronic childhood and adult conditions at an increased incidence (Kelly, 2018). Initially, those born preterm may not vary from the typical developmental course or raise significant concerns over health or development. However, children born preterm benefit from high-quality and comprehensive interventions and special educational accommodations to promote literacy, numeracy, and life skills (Msall, Sobotka, Dmowska, Hogan, & Sullivan, 2018). The following guidelines aim to enhance the identification of those born prematurely, empower health care providers to employ familiar screening strategies, and advocate for mitigations strategies with anticipatory guidance and health promotion.


Review of Literature

In anticipation of developing these evidence-based recommendations, the authors undertook an extensive review of the existing preterm birth survivor outcome literature. The literature reviewed in preparation for the coalescing of these recommendations included meta-analyses or systematic reviews identified through a systematic search in PubMed, CINAHL, PsychInfo, and Cochrane databases, with assistance and input from a medical librarian. Including only meta-analyses or systematic reviews, umbrella reviews are designed to provide a broad picture of the research base (Aromataris et al., 2015) and may be used to inform practice guidelines or to highlight known strengths or gaps in an area of research or practice (Cantrell, Franklin, Leighton, & Carl- son, 2017). Search terms included: (“Premature birth” OR “Preterm” OR “Preterm infant” OR “Infant, premature, extremely premature”) AND (Adolescen* OR Adult) AND (“Outcome” OR “Outcome assessment” OR “Outcome assessment healthcare” OR “Outcome and process assessment” OR “Prognosis” OR “Long-term adverse effects”). Additional filters included systematic review, meta-analysis, Cochrane review, and review. Search years were from 2010 to 2019 for the school-age review and from 2010 to 2018 for the adolescent and adult review. The methodologic qual- ity of all reviews was assessed using the Joanna Briggs Insti- tute Critical Appraisal Checklist for Systematic Reviews and Research Synthesis (Aromataris et al., 2020).

These findings were published as two umbrella reviews, one focused on  adolescents and  adults  (Kelly  & Griffith, 2020a) and the other focused on school-aged children (2−12 years of age; Kelly & Griffith, 2020b). Additional details of the umbrella review methodology and search parameters are available in the publications (Kelly & Griffith, 2020a; Kelly & Griffith, 2020b). The review of school-aged outcomes included 29 reviews: 14 meta-analyses, eight systematic reviews, and seven described as both meta-analysis and systematic review (Kelly & Griffith, 2020b). The adolescent and adult outcomes include 16 reviews: five meta-analyses, five systematic reviews, and five described as both meta-analysis and systematic review, and one comprehensive review (Kelly & Griffith, 2020a). The researchers also explored literature published between the umbrella reviews publications the development of these recommendations (from 2018 to 2020) to ensure a comprehensive literature review.

Development of Recommendations

Following the extensive review of the literature, the researchers coalesced the currently available research, formal and gray literature (manuals, guidelines, curricula, and recommendations) into clinical practice recommendations. The set of recommendations aims to guide the primary care provider to elicit, understand, and incorporate a patient’s pre- term birth history across the life course. Thirty-six meta- analyses, systematic reviews, guidelines, and recommendations were incorporated into the preterm birth history recommendations (see Table 1).

The recommendations were organized into patient care categories: assessment and diagnosis, prevention and management, and referral and treatment. Assessment and diagnosis recommendations focus on identifying a pattern of risk and recognizing the relative importance that risk confers to individual health. Prevention and management recommendations address the importance of surveillance, anticipatory guidance, and patients and family education. This process should begin at birth, continue through adolescence, and into the transferal of care to the adult provider. Because of the importance of prevention and management in health care, categories were further separated into general recommendations, cardiovascular surveil- lance, and pulmonary surveillance. Referral and treatment recommendations focus on a process that ensures the necessary connections are made, and the patient is partnered with the appropriate health care team to recommend treatment plans for supportive resources. Proper screening and identification may mitigate potential medical and psychological challenges that will affect the patient’s quality of life.

The American Association of Critical-Care Nurses’ level of evidence grading system was used to assess the literature supporting the recommendations (Peterson et al., 2014). Twenty-two references were level A (meta-analysis), one was level B (well-controlled studies), 10 were level C (systematic and integrative reviews), and three-level D (peer-reviewed standards). Table 1 includes the recommendations and the references that support the specific recommendations, with the American Association of Critical-Care Nurses grading. Tables 2−4 highlight the relevant findings from each study and reference. It is important to note that the recommendations are not dissimilar to guidelines for full-term children. Rather they address the importance of recognizing preterm birth as a portion of a patient’s history that increases their risk for commonly occurring conditions.

Health care provider feedback was solicited to help refine and validate the recommendations. Specifically, the feedback was solicited from physicians and nurse practitioners practicing in neonatology, pediatric primary care, pediatric specialty care, and family medicine. The initial e-mail listing was sent to numerous contacts of the researchers across several states and health systems. Responses were anonymous, and participants were asked to share the guidelines with other health care provider colleagues. Literature suggests that most practicing physicians and nurse practitioners would not be familiar with the long-term outcome literature (Kelly  & Dean, 2017; Raju et al., 2017b), so efforts were made to facilitate a review of the supporting literature. Recruitment e-mails and recommendation documents included embedded hyperlinks of the literature used to support each recommendation. Respondents were asked to review the literature before completing the evaluation survey. Respondents were asked to report the level of agreement with each recommendation and the feasibility of implementation in practice. Open-ended comment sections were included following each patient care category and after reviewing the entire set of recommendations.

The research plan was evaluated and deemed an exempt study by the Villanova University Institutional Review Board.

Results from Review of Literature

Conditions experienced by preterm birth survivors after the NICU are not unique to the preterm birth phenomena. In an exploration of the 2011−2012 National Sur- vey of Children’s Health data, the six most commonly occurring chronic health conditions in children were the same in full-term and preterm groups (Kelly, 2018), yet the preterm group experienced these conditions more often. Aylward (2005) described these conditions experienced by those born preterm as low severity, high-frequency conditions. The adult outcome literature supports similar patterns, that preterm birth survivors experience these conditions, whether in childhood or adulthood,  with increased frequency. Because most adult patients do not share or are not asked about their preterm birth his- tory, such conditions are not attributed to being born early.

Tables 2−4 present the findings that support the preterm birth history recommendations. The findings from the literature may be summarized in a few key points.

Preterm birth history increases an individual’s risk for:

1.Impaired school performance related to math, spelling, reading, receptive language, and decreased executive function (cognitive flexibility, working memory, and verbal fluency).

2.Behavioral and mental health concerns including depression, anxiety, and attention deficit hyperactivity disorder.

3.Cardiovascular disease, specifically hypertension, which poses an increased risk for females.

4.Pulmonary disease, specifically wheezing, asthma, and reduced lung capacity. This risk exists even for those without a history of bronchopulmonary dysplasia.

5.Motor delay, visuomotor integration disorders, and coordination impairment.

Results From External Review of Preterm Birth History Recommendations:

From the approximately 75 initial e-mail addresses, 28 respondents completed the evaluation survey (response rate of 37%). Responses were excluded if less than 25% of the survey was completed (n = 10 surveys). There were some items skipped on the survey, resulting in variation in responses per item from a maximum of 28 responses to a minimum of 20 responses. Agreement and feasibility per- percentages, as reported, are listed in Table 1.

There was an overwhelmingly positive response to the recommendations in both agreement and feasibility. Only two recommendations resulted in less than 85% agreement; both items related to screening for metabolic syndrome. There was an 83% agreement with the recommendation for monitoring of body fat mass at annual visits. There was a 78% agreement with screening to include fasting glucose, serum insulin levels, and lipid profile. Although some respondents disagreed with the recommendation, both were deemed feasible by 95% of respondents, suggesting that it could be accomplished without a significant burden to the patient, provider, or practice. None of the respondent’s feedback suggested significant adjustments to the individual recommendations.

Respondents shared suggestions for implementing the recommendations, including programming a hard stop in the electronic medical record for recording preterm birth history.

Respondents’ feedback related to implementation focused on the basic availability of necessary equipment such as appropriately sized blood pressure cuffs for all ages and sizes. Adherence to current American Academy of Pediatrics Guidelines for cholesterol screening was asserted. Respondents agreed with the recommendations and the need for avoidance of air and environmental toxins. Related to respiratory conditions, implementation recommendations included a call for upstream interventions to reduce overall air and environmental toxins.

Others shared concerns for implementation related to the availability of community support and patient resources varying by geographic region, which leads to difficulty in helping families in resource-poor areas. Concerns were raised regarding the accessibility and feasibility of lifestyle modification recommendations in patients without necessary resources. Respondents encouraged referrals to special infant care clinics, yet this is only available in some regions and typically only until 2 years of age. Others questioned if providers should reflexively screen all children born preterm for autism spectrum disorders or recommend starting elementary education with individualized education plans. Access to services and the importance of communication with the school system was represented in this response: “Access to services is often the biggest hurdle, as the PCP for a child/teen, supporting their needs in school is essential; however, much of those decisions are based upon the district.” Further concerns were related to the systemic racism and inherent inequities that contribute to preterm birth rates.

Recommendations related to metabolic syndrome risk had the lowest agreement percentages; 83% for monitoring body fat at annual visits and 78% for fasting glucose, serum insulin levels, and lipid profile screenings. One participant questioned the need for annual invasive testing. Other participants voiced concerns about the early onset of metabolic syndrome and obesity in preterm birth survivors and supported the recommendations suggesting that these were interventions currently being implemented in their practice. This response represented the recognition of the importance of weight gain early in the preterm birth survivor’s life and the difficulty in discussing obesity: “When preterm infants have struggled to gain weight, I think it’s really hard to discuss watching child’s weight post-discharge.”

Several agreed that premature birth should be a history feature that follows the patient into adult care. One pediatric provider shared:

I believe my practice is very good with identifying the needs for babies born prematurely. I also believe that for most this history does follow with them throughout their stay in pediatric practice. We do have diagnosis on their problem lists, but after they transition out, I do not know how the adult world cares for these patients or if they recognize that there are developmental or psychological issues created from prematurity.


Although the researchers attempted to coalesce the most recent publications and findings related to broad outcomes for individuals born preterm, some cohorts analyzed in meta-analyses were born before the 1990s when exogenous surfactant became available and mechanical ventilation techniques improved considerably. It is important to recognize the heterogenicity of preterm birth outcomes and the varied proximal and distal protective factors that may alter those outcomes.


This set of preterm birth history recommendations is the first comprehensive document to advocate for universal recognition and appreciation of life course health risks related to an individual’s preterm birth history. These recommendations advocate a paradigm shift toward proactive intervention, rather than the reactive practice of waiting for children to fail to meet specific milestones or begin to show comorbid tendencies. The recommendations acknowledge the need for early identification, intervention, and family support for not just the most vulnerable infants but for all who were born before the completion of 37 weeks of gestation. It is with conscious intent that the authors make recommendations for surveillance and referral rather than for specific interventions. Each individual must be evaluated and managed as dictated by the specific features of their strengths and limitations.

Healthcare providers caring for an individual born pre-term should not assume that preterm birth concerns are left in the NICU or resolve at 2 years of age. Assumptions that individuals born preterm had the benefit of neonatal follow-up or even coordinated primary care on the basis of preterm birth status should not be made. Boone, Nelin, Chisolm, & Keim (2019) found that 47% of preterm participants lacked a medical home. The evidence for creating recommendations specific to individuals with a history of preterm birth through the life course is well established. However, dissemination directed at concrete ways to improve patient care has been limited.

The research aimed to coalesce the best available evidence to guide the development of initial recommendations. It is hoped that increased attention to potential risks will result in improved outcomes and decreased noncommunicable risk-based conditions in adulthood. With any new set of recommendations, there may be unanticipated risks. The increased provider attention to potential risk could result in perceptions of vulnerability in the patient or family. To balance this risk, the researchers support providers addressing preterm birth history in the same manner a family history of heart disease is addressed. Recognize it as a risk, advocate for lifestyle modifications that mitigate the risk, and intervene as necessary.

The patient care recommended is not vastly different from that provided to children born at term. Rather, the usual practice would be enhanced by a recognition of the potential increased risks. Health care providers should focus on facilitating chronic disease prevention by promoting healthy lifestyles and recommending early and continued support services for psychosocial and neurodevelopmental difficulties (Luu et al., 2017; Nuyt et al., 2017; Raju et al., 2017a; Raju et al., 2017b). Cardiovascular and pulmonary risk are discrete conditions with well-recognized management. It is important to highlight the psychological and behavioral conditions that may accompany preterm birth history. Behavioral and mental health are critical to development and transition to adulthood. Recognition and the early support of patients with these conditions are essential.

The implementation of these recommendations may look different in each practice setting. Resources are necessary to enact these recommendations fully. Geographic variation related to access to services will challenge an already stressed system. Concrete recommendations such as changing patient intake forms and built-in data entry requirements for electronic health records are a start. Further research will be required to evaluate implementation strategies and best practices.

The preterm birth history recommendations should continue as adolescents transition to adult health care. Respondents verbalized a lack of knowledge regarding adult provider preparedness in recognizing the implication of pre-term birth history. Recognition of the hypertension risks for adults with preterm birth history may mean intervening earlier with medications to decrease stroke risk. By developing practice recommendations supported by the evidence, there is a mechanism to increase provider awareness and subsequently improve physical and mental health outcomes. Increasing awareness through current and future health care provider education is imperative in bridging this gap (Kelly & Dean, 2017; Kelly & Michalek, 2019) and decreasing the challenges associated with the transference of care (Fernandes et al., 2010). Education is just one area of focus; advocacy and support of community resources must also be addressed. As noted by the respondents, there is a discrepancy in access to appropriate and necessary services that will require a collective approach in ensuring equity in obtaining the necessary community resources.


Through an in-depth review of literature and contributions from health care experts in pediatric and adult care, evidence-based recommendations were made that will assist in transformational health care for children, adolescents, and adults with a preterm birth history. The goal of these recommendations is the mitigation of chronic health sequelae throughout the life course. The researchers recognize that further investigation into the education and training of adult health care providers related to the implication of preterm birth history is warranted. The first step in reducing the potential for chronic health sequelae is incorporating the question, “Were you born preterm?” into all patient health histories and appreciating the implications of a positive response.

Preemie Triplets Overcome the Odds

August 7, 2020UVM Health Network Logo

They are miracle micro-preemies triplets Cian, Declan and Rowan DeShane, survivors of extremely premature deliveries whose birthdays span not just different days and months, but two different years and decades.

Cian was born first on Dec. 28, 2019. At just 22 weeks, 6 days, he was one of the youngest infants to arrive at UVM Medical Center’s Neonatal Intensive Care Unit (NICU). He weighed only 1.08 pounds, not much more than a 16-ounce bottle of soda.

On Jan. 2, 2020 – five days later – Cian’s identical twin brother, Declan, was born. He weighed 1.47 pounds. Within moments, the boys’ sister, Rowan, entered the world at 1.08 pounds.

Remarkably, each made it through the natural birth process. “When my water broke, I burst into tears because I didn’t think they could survive being born so early. I thought it was all over,” says their mom, Kaylie, who had worked with a fertility clinic to get pregnant.

Life-Saving Interventions

To put the DeShane triplets’ very early births into perspective, a baby is considered full-term at 39 weeks. The World Health Organization defines preterm as babies born before 37 weeks of pregnancy. Less than 32 weeks is defined as “very preterm” and at or under 25 weeks is “extremely preterm.” Until the past year or so, health care organizations like UVM Medical Center did not attempt high-tech intensive medical interventions to resuscitate infants born at 23 weeks or less because their survivability rate was so low and the and the list of diseases and disabilities so long for those infants who lived.

“Every organ and system in these extremely low birth-weight babies is ill-prepared to meet the world,” explains Roger Soll, MD, a neonatologist at UVM Medical Center and the  H. Wallace Professor of Neonatology at the Larner College of Medicine. He says there isn’t any one breakthrough that accounts for his team’s recent successes with extremely preterm babies.“ We’ve perfected our team approach to an optimal system of care, starting with maternal-fetal medicine during the pregnancy and delivery, and continuing to the NICU where respiratory therapists, nurse practitioners and nurses all work together to provide round-the-clock care.”

Hannah Jackman, RN, has a vivid memory of the day Cian was born. “It seemed like there were dozens of healthcare workers in the delivery room, all in yellow gowns, awaiting three tiny triplets. I was one of them, and I remember my heart feeling like it was leaving my chest as I watched Cian’s parents sob and pray,” she says. “I wanted a miracle for this family so badly.”

For Kaylie and her husband, Brandon, the decision was easy. They told the medical team: “Do everything to save them.”

Cian was immediately intubated. Declan and Rowan were both septic at birth and given intravenous antibiotics. The infants were placed in incubators, wires connecting them to monitors so caregivers could keep track of their temperatures, heart rates and breathing. Tubes delivered medicines and fluids to their tiny veins. Pulse oximeters measured the oxygenation of their blood.

Despite the tangle of equipment, mom and dad were encouraged to hold their infants skin-to-skin. During the triplets’ months-long stay in the NICU, the couple made certain one of them was there every day. They each spent weeks at a time at the Ronald McDonald House while the other tended to their two older children at home three hours away in Norwood, N.Y. When visitors were restricted to one parent per pediatric patient due tothe COVID-19 pandemic, the couple joked that they had more than enough babies to be allowed in the NICU together on weekends.

“We were already in survival mode when COVID hit, so it was just one more thing,” Kaylie says. “We were already washing our hands constantly and being especially careful to keep them safe from any germs.”

It Takes a Team

The infants had their own primary nurses assigned to them during every shift of every day. This consistency of care meant that every potential problem was noticed and immediately attended to.

After Cian’s birth, nurse Jackman signed up to be his primary nurse during her 12-hour day shifts.

“I got to spend four months caring for this tiny but mighty human, watching in amazement as he overcame obstacle after obstacle.” Hannah Jackman, RN,University of Vermont Medical Center.

“It is a relationship like no other – these parents are trusting you with their newborn. Advocating for Declan became my biggest priority,” says Julia Watsky, RN, one of the trio of primary nurses dubbed the “dream team” who worked the night shift on Sundays, Mondays and Tuesdays. “I learned every aspect of Declan’s care – from how he liked to be positioned to knowing when

One night Ashley Ostler, RN, noticed that the normally lively Rowan was hardly reacting to her.

“Rowan is typically a sweet, feisty lady. She is not exactly patient and she makes her demands known,” observes Ostler. “She often made me laugh late at night because she really does know how to push your buttons while melting your heart with her adorable little face.”

When Rowan went limp and her abdomen became distended, Ostler rightly suspected she had developed a common but serious intestinal disease called necrotizing enterocolitis, or NEC, which required many interventions until she stabilized.

Cian also developed NEC and, at one point, his parents were asked to create an end-of-life plan. “That taught me to never think we were out of the woods,” Kaylie says.

Lindsey Flanders, RN, remembers the night when Cian’s oxygen needs kept climbing until he reached 100 percent and couldn’t go any higher. “Knowing Cian, I knew this wasn’t his norm and that he needed additional support to bring his oxygen requirement back down.” He was started on nitric oxide to relax the vessels in his lungs and that did the trick.

After 106 days in the NICU, Declan, nicknamed “the Chunkster” because he was the heaviest of the bunch, was the first to go home on April 17. “It was truly a bittersweet moment” says nurse Watsky, who made certain to be there to say goodbye to Declan, even though it was her day off. “After seeing him grow from just over 1 pound, to learning how to eat, how to breathe on his own, and so much more in between – I was so proud of him,” she says.

“Rockstar Rowan” went home on April 30. And firstborn Cian finally joined the rest of his family on May 4. “I’m so proud of the chubby, feisty, blue-eyed, beautiful boy he is,” nurse Jackman says.

The triplets left the NICU with respiratory support and monitors but eating all of their foods without issue. As of July 15: Cian was 13 pounds, 1 ounce; Declan was 14 pounds, 11 ounces; and Rowan was 10 pounds. They are hitting all of their milestones — babbling, cooing, laughing, smiling and rolling over.

The DeShanes’ relationship with UVM Medical Center is far from over. They make regular visits to see a pediatric pulmonologist and ophthalmologist. And neonatologist Deirdre O’Reilly, MD, director of UVM Medical Center’s Neonatal Medical and Developmental Follow-up Clinic, will see the preemies regularly during their first three years to assess their progress, especially regarding motor, language and cognitive skills. If there are gaps, her staff will connect them to the appropriate supportive services. “Getting adequate and targeted therapies can be life-changing for babies,” she says.

In her 13 years of practice, Dr. O’Reilly had never seen a baby born as early as Cian survive. Each of the triplets are doing better than she expected, and that success is what makes her work so worthwhile. She says: “It really is amazing, because you can learn about the numbers of premature infants that survive, but really experiencing it with the parents and seeing the joys in their faces, and the kids too, it’s just magnificent.”


Breastmilk for preterm babies | pumping | exclusive human milk diet and donor human milk bank

CanadianPreemies  Aug 3, 2020

Fabiana Bacchini, CPBF’s Executive Director, talks with Natalie Millar about the importance of breastmilk for preterm babies, pumping, exclusive human milk diet and donor human milk bank. . Natalie has been a clinical dietitian for 15 years with 10 years dedicated to the Regina General Hospital NICU. She is a certified lactation consultant; co-chair of the Donor Human Milk committee of Saskatchewan and Coordinator of the Regina General Hospital’s Milk Drop for NorthernStar Mothers Milk Bank Milk. According to her two young kids, Natalie’s job is to steal milk from ladies and feed it to all the teeny babies.

Strategies to Improve Mother’s Own Milk Expression in Black and Hispanic Mothers of Premature Infants

Cartagena, Diana PhD, RN, CPNP; McGrath, Jacqueline M. PhD, RN, FNAP, FAAN; Reyna, Barbara PhD, RN, NNP-BC; Parker, Leslie A. PhD, RN, NNP-BC, FAAN; McInnis, Joleen MS, LIS, MFA Strategies to Improve Mother’s Own Milk Expression in Black and Hispanic Mothers of Premature Infants, Advances in Neonatal Care: February 2022 – Volume 22 – Issue 1 – p 59-68 doi: 10.1097/ANC.0000000000000866



Mother’s own milk (MOM) is the gold standard of nutrition for premature infants. Yet, Hispanic and Black preterm infants are less likely than their White counterparts to receive MOM feedings. Evidence is lacking concerning potential modifiable factors and evidence-based strategies that predict provision of MOM among minority mothers of premature infants.


A review of the literature was conducted to answer the clinical question: “What evidence-based strategies encourage and improve mother’s own milk expression in Black and Hispanic mothers of premature infants?”

Methods/Search Strategy: 

Multiple databases including PubMed, Cochrane, and CINAHL were searched for articles published in the past 10 years (2010 through May 2020), reporting original research and available in English. Initial search yielded zero articles specifically addressing the impact of lactation interventions on MOM provision in minority mothers. Additional studies were included and reviewed if addressed breastfeeding facilitators and barriers (n = 3) and neonatal intensive care unit breastfeeding support practices (n = 7).


Current strategies used to encourage and improve MOM expression in minority mothers are based on or extrapolated from successful strategies developed and tested in predominantly White mothers. However, limited evidence suggests that variation in neonatal intensive care unit breastfeeding support practices may explain (in part) variation in disparities and supports further research in this area.

Implications for Practice: 

Neonatal intensive care unit staff should consider implementing scaled up or bundled strategies showing promise in improving MOM milk expression among minorities while taking into consideration the cultural and racial norms influencing breastfeeding decisions and practice.

Implications for Research: 

Experimental studies are needed to evaluate the effectiveness of targeted and culturally sensitive lactation support interventions in Hispanic and Black mothers.


Cardiologists are using a new device to help treat micro-preemies — babies born before the 26th week of pregnancy and/or weighing less than 2 pounds — who develop a life-threatening heart defect at birth.

By: Sara Sidery • Posted: January 17, 2022

State-of-the-art technology is helping save the lives of some of Louisville’s youngest patients.

Cardiologists are using a new device to help treat micro-preemies — babies born before the 28th week of pregnancy and/or weighing less than 2 pounds — who have a heart defect caused by part of the fetal structure that remains at birth.

Joshua Kurtz, M.D., pediatric cardiologist with Norton Children’s Heart Institute, affiliated with the U of L School of Medicine, has performed numerous successful procedures to treat this defect known as a patent ductus arteriosus (PDA). It is one of the most common congenital heart defects in premature babies.

The PDA is a connection between the blood vessels that carry blood from the heart to lungs and the rest of the body. A normal part of fetal development, the opening allows the mother’s body to provide enough blood and oxygen until birth. Soon after a newborn takes its first breaths, the opening typically closes automatically, but with some premature babies, it remains open.

“The PDA causes excess blood from an infant’s heart to pump into their lungs, which can lead to fluid in the lungs or heart failure and make it difficult to breathe and grow  if not addressed,” Dr. Kurtz said. “This new advancement in technology allows us to respond quickly with a minimally invasive procedure.”

The Amplatzer PiccoloTM Occluder, approved by the Food and Drug Administration in 2019, is an alternative to open  surgery and can close the opening in a baby’s heart with fewer risks and a speedier recovery. The “PiccoloTM” device, which is the size of a small pea, is implanted by using a special IV known as a sheath in the infant’s leg and guiding the device through blood vessels to seal the connection in the blood vessels. Healthy tissue eventually grows around the small mesh piece.

Recently, a team at Norton Children’s Heart Institute successfully performed the procedure on a 2.4-pound micro-preemie who was born at 24 weeks and  had  heart failure due to the PDA. Dr. Kurtz and his colleague Dr. Edward Kim performed three additional procedures in early December, and the babies — who weighed less than 2.5 pounds — were able to continue their recovery in the neonatal intensive care unit.

The Amplatzer PiccoloTM Occluder is just one piece of advanced equipment at Norton Children’s Heart Institute that can help treat heart defects commonly seen in babies. Using the latest technology means children undergoing treatment or diagnosis in the catheterization lab will receive less radiation, speedier, and more accurate procedures, according to Dr. Kurtz.


The Teladoc device connects consultants.

Hospital robots will save the lives of hundreds of premature babies

The technology is already enabling consultants to work at multiple sites at once, saving vital time

James Tapper Sun 21 Nov 2021

Hundreds of premature babies could be saved by using new technology trialled during the pandemic that will allow doctors to treat them remotely, leading doctors say.

Telemedicine “robots” that enable consultants to make bedside video calls have been used at Liverpool Women’s and Alder Hey children’s hospitals to treat sick babies.

Now the head of the hospitals’ neonatal unit is putting together plans to use the Teladoc devices, so that specialists can use their expertise to help teams at smaller hospitals treat children, even in emergencies.

Dr Chris Dewhurst, the clinical director of the Liverpool Neonatal Partnership, said: “This definitely has the potential to save the lives of extremely preterm infants who were born outside of specialist centres, and improve their outcomes.

“What we’ve demonstrated is that it’s easy to use, it improves the quality of care for babies and their families, improves the speed of review, and it is very close to being there in person.”

The device, which sits on a mobile frame, has cameras, a screen and even a stethoscope, and can also link to MRI scanners and thermal-imaging cameras. It allows a consultant watching from elsewhere to view a patients’ medical records on the spot.

Dewhurst and his team began using two of the devices in March 2020. “We lost seven of our 14 consultants due to shielding or isolation – 40% of the time available for clinicians to be in hospital. It [the robot] kept us going.”

On some occasions, using the robots was better than being there in person, because the device has a camera on a boom that can be placed above the baby to show what’s happening, he said. “If I was there in person, I wouldn’t be able to see that because there were people around the baby.”

About 90,000 babies a year in England need some sort of specialist care after they are born. There are 54 Neonatal Intensive Care Units (NICUs) such as the one in Liverpool that treat the most serious cases of premature babies and those with serious conditions. Another 83 hospitals have Local Neonatal Units (LNUs) that offer short-term intensive care. And there are 44 Special Care Baby Units for monitoring the least serious cases.

Doctors try to identify which foetuses might require help after birth, but that is not always possible, and 9,523 babies needed to be transferred between hospitals at least once in 2015, according to figures from the National Neonatal Audit Programme compiled by Bliss, the charity for babies born sick or prematurely.

“For babies who are extremely preterm, and have not been able to move into an NICU, then they’re not going to be looked after by people with the specialist skills. And we know that those babies have worse outcomes,” Dewhurst said.

He is bidding for funding for the devices in hospitals with SCBUs so that clinical teams can call on specialist advice quickly.

“We now need to find the funding so that babies who were born in other hospitals who need immediate intervention can have an neonatologist there immediately, within minutes, rather than them not being there at all, because they’re 40 to 50 miles away.”

A similar system has been run by the Mayo clinic in Rochester, Minnesota, where neonatologists support teams at 19 regional hospitals.

Dr Jennifer Fang, medical director for the Mayo Clinic’s teleneonatology programme, said that only babies in a critical condition needed to be transferred, and fewer parents had to go through the stress of being separated from their babies.

“What we’ve observed is that the odds of a baby needing a transfer to a higher level of care or transfer to a hospital with an NICU are reduced by anywhere from 30 to 50%,” she said.

With difficult births or injuries to babies during birth, the Mayo specialists have a target to be on hand for remote consultations within five minutes.

Before the programme, the clinic was involved in birth-injury lawsuits about every eight to nine months, Fang said. “Now that our programme’s in place, we haven’t had a single birth-injury case for the last eight years.”

A study by the clinic showed that having neonatologists involved remotely meant that clinical teams in smaller hospitals were less likely to be overwhelmed by the complexity of dealing with a sick baby. Babies were more likely to have checks on temperature, breathing and glucose levels.

Jonathan Patrick of Consultant Connect, which supplied the robots, said the devices could be used in other circumstances. “It allows you to have access to clinicians, for example, who have retired but still want to be part of the workforce, yet can’t go to hospital every day.”

A trial is underway at University Hospitals Leicester NHS Trust where consultants doing elective surgery are often split across two sites. Dr Steve Jackson, who is running the trial, said that consultants on different sites could dial in to a consultation and discuss the case on the spot rather than doing separate ward rounds.


Retinopathy of Prematurity Requiring Treatment Is Closely Related to Head Growth during Neonatal Intensive Care Unit Hospitalization in Very Low Birth Weight Infants

 Bae S.P.a · Kim E.-K.b · Yun J.c · Yoon Y.M.d · Shin S.H.b · Park S.Y.e



Background: Retinopathy of prematurity (ROP) is caused by prenatal sensitization and postnatal insults to the immature retina. This process can be associated with the postnatal growth of preterm infants. We investigated whether ROP requiring treatment was associated with the postnatal growth failure of very low birth weight (VLBW) infants. 

Method: From a cohort of VLBW infants (birth weight <1,500 g) registered in the Korean Neonatal Network from January 2013 to December 2017, 3,133 infants with gestational age (GA) between 24 and 28 weeks were included in the study. Postnatal growth failure was defined when the change in each anthropometric z-score between birth and discharge was <10th percentile of the total population. Propensity score matching (PSM) at 1:1 was performed to match the distribution of GA and postnatal morbidities between infants with and without ROP requiring treatment. Prenatal factors and ROP were analyzed by conditional logistic regression. 

Results: Of 3,133 enrolled infants, 624 (19.9%) were diagnosed with ROP requiring treatment. After PSM, ROP requiring treatment was associated with postnatal growth failure assessed by head circumference (adjusted odds ratio [aOR] 1.91, 95% confidence interval [CI] 1.18–3.09), but not weight (aOR 1.45, 95% CI 0.97–2.17) and length (aOR 1.21, 95% CI 0.81–1.82). 

Conclusion: ROP requiring treatment was associated with poor head circumference growth, not with weight and length. Our findings suggest that ROP requiring treatment and poor head growth during NICU hospitalization are fundamentally related.


A digital decision aid for shared decision-making in prenatal counseling

February 10, 2022   Lindsey Carr, Associate Editor

van den Heuvel JFM, Hogeveen M, Lutke Holzik M, van Heijst AFJ, Bekker MN, Geurtzen R. Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing. BMC Med Inform Decis Mak. 2022;22(1):7. Published 2022 Jan 6. doi:10.1186/s12911-021-01735-z

When pregnant women and their partners experience imminent extreme premature labor, they must decide how to proceed if labor continues. With the risks of morbidity and mortality in extremely premature infants, 2 procedures are considered treatment options. Through shared decision-making with their provider, patients choose treatment based on their values and preferences; Palliative comfort care—providing warmth and comfort with no medical assistance—or early intensive care—resuscitation of the infant and initiation of neonatal intensive care (NICU).

Because the treatment options for imminent extreme premature labor center largely on patient preference, decision aids (DA) can help facilitate the patient-provider discussion and guide the shared decision-making process.

Providers often use DA tools to assist in patient education, prenatal counseling, and shared treatment decisions regarding imminent extreme premature labor, including:

  • A card set with images and illustrations of survival rates and NICU complications
  • 10-minute video clips of parents discussing treatment choice and explaining their decision
  • a tablet application
  • a virtual reality experience

Researchers in the Netherlands developed an open-access, web-based DA that informs, guides, and supports the prenatal counseling process for patients and providers.1

Dutch national guidelines for prenatal counseling in imminent extreme preterm labor were published in 2019 using the International Patient Decision Aid Standards (IPDAS) process. They conducted surveys and interviews with patients and providers to determine general views and preferences on prenatal counseling, as well as DA preferences and concerns. They concluded that, while both patients and providers wanted supportive materials to assist verbal conversation, they were not readily available.

Researchers in the Netherlands used these initial findings to inform development of a digital DA. To create the prototype, they recruited individuals previously involved in the Dutch guidelines’ development for multiple rounds of testing—6 sets of parents with children born extremely premature (between 240/7 weeks and 246/7, 2 obstetricians, 1 neonatologist, 1 expert in quality-of-care improvement, 1 DA-development professional, and 1 Dutch language expert.

An online module, complete with graphics, then became the initial prototype. Researchers tested feasibility on a group of providers and pregnant women who were not involved in earlier testing. Patients comprised of 2 groups—group 1 comprised pregnant women between 240/7 and 24 6/7 weeks gestation who presented to an outpatient clinic for a routine antenatal visit with no history of premature delivery (n=4). The second group included pregnant women admitted for imminent preterm labor <246/7 weeks gestation and received antenatal counseling (n=3).

Clinician participants included 4 obstetricians and 4 neonatologists from 2 Dutch university hospitals with NICU facilities. Both parties filled out a questionnaire consisting of a rating from 1-5 (very much disagree-very much agree), plus 3 elements they liked and 3 that could be improved.

Researchers ultimately included the following informational content into the DA:

  • General information on imminent extreme premature labor
  • explanation of the 2 options: early intensive care or palliative comfort care
  • consequences of comfort care (such as, no need for invasive procedures, expected death within hours following birth)
  • mortality and survival rates
  • risks and long-term results for extreme preterm infants to have neurodevelopmental
  • physical, visual, and hearing problems

For decision support, they included a comparison page, key points, and “my choice,” which reflected parental values and standards. Visual elements in the DA included an illustration of 2 neonates to compare size and weight after extreme preterm birth and term delivery, an image of an extremely preterm infant in an incubator (active care) with notes on all life-supporting devices, an image of parents holding an infant in blankets (comfort care) and illustrations to show possible disabilities.

In its final form, the DA became a web-based platform available to Dutch providers and patients via internet, tablet, and smartphone browsers. It has been approved by the Dutch Society of Obstetrics and Gynecology, the Dutch Pediatric Society, and the Dutch patient organization CARE4NEO.

The decision-support elements in this web-based DA tool set it apart from others currently available. Researchers noted that the DA should support, not replace, the verbal counseling conversation. It may also be used by patients prior to and following counseling.

“Focusing on the format and distribution of our DA, we developed a freely available online DA and, moreover, included features to support decision making and help parents think about their values and preferences,” the authors wrote. “This is anticipated to enhance the uptake and use of the DA amongst different types of users, and we hope to increase the involvement of parents in decision-making.”


Kat enjoying the view at Edinburgh Castle, Scotland

KAT’s Korner

And for our younger brother and sisters:

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Feb 24, 2018       SUCCESS INSIDER

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