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EFCNI at the Annual Meeting of ESPGHAN

EFCNI at the Annual Meeting of ESPGHAN

The 51st Annual Meeting of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) took place in Geneva, Switzerland, from 9 to 12 May 2018. At the EFCNI booth, our colleagues Johanna and Philine represented the foundation and informed participants about our general work and current projects.

Johanna Walz, Professor Berthold Koletzko and Philine Jaeger introducing the EFCNI factsheet on Parenteral Nutrition

Johanna Walz, Professor Berthold Koletzko, Philine Jaeger

In addition, we used this congress to launch several new publications:

• The position paper and toolkit for promoting human milk banks are now available in English. Both publications were developed by an interdisciplinary project Scientific Advisory Board with the aim to support clinical centres in the setup and operation of human milk banks. After positive feedback from other countries, the position paper and toolkit were translated into English, but still need adaption to country-specific conditions

• Our new factsheet “Why the first 1,000 days of life matters” deals with the period between conception and a child’s 2nd birthday. The four-page factsheet highlights the enormous impact of this time period on the health and wellbeing of unborn babies, infants, and young children, as well as on pregnant and lactating women.

• The EFCNI factsheet “Parenteral nutrition in preterm and ill babies” describes the feeding therapy that provides nutrition through the veins to babies who cannot (yet) be adequately fed by mouth or through a feeding tube.

As we want to ensure widely accessible information for all stakeholders in the field of maternal and newborn care, EFCNI provides all publications free of charge ant www.efcni.org/downloads.

We warmly thank all experts and partners who made these publications possible.

 

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Lighthouse Project: NICU Design at Lurie Children’s Hospital of Chicago

A guest article by Vita Lerman, Ann & Robert H. Lurie Children’s Hospital of Chicago, USA

Ann & Robert H. Lurie Children’s Hospital of Chicago is a state-of-the-art, 22-floor facility that opened in 2012 on the campus of the hospital’s academic partner Northwestern University Feinberg School of Medicine. It was built to replace the previous facility (called Children’s Memorial Hospital), providing expanded capacity and innovative, child-friendly design that promotes healing. During every stage of the planning process, project leaders met with the hospital’s Kids and Family Advisory Boards to ensure that design decisions incorporated their needs.

One of the innovations at Lurie Children’s is the design of its neonatal intensive care unit (NICU), which has all private rooms, like the rest of the hospital. While there is sufficient evidence that NICUs with all private rooms benefit newborns and their families, the primary concern with this model expressed by caregivers is not being able to visually monitor babies as easily as in the traditional NICU ward model that has beds arranged in a large open room. The layout of the 44-bed NICU on the 14th floor of Lurie Children’s, with its four transparent nursing stations, each surrounded by a grouping of patient rooms with glass doors, combines the best of both models. It provides privacy and quiet for families and sufficient visibility of infants for caregivers.

NICU inpatient room (c) Lurie Children’s Hospital Chicago

The remaining 16 NICU beds are part of the Regenstein Cardiac Care Unit, where patients with heart conditions are treated from admission to discharge. The patient rooms in this unique unit are designed to meet the technological requirements of an intensive care room, while providing the family amenities and atmosphere of an acute care patient room. This acuity-adaptable model helps improve patient safety and comfort by reducing transfers within the hospital.

The NICU at Lurie Children’s also includes transitional care rooms that are equipped to ensure that new parents receive necessary instruction and hands-on practice in caring for their baby in a simulated home setting. These rooms are designed to build family members’ competence and confidence, which helps reduce re-admissions.

Crown Sky Garden (above), CMH int Level 12 fire truck (below left), main lobby (below right) (c) Lurie Children’s Hospital Chicago

To help reduce the stress of hospitalization and provide families with an inspiring respite space, Lurie Children’s features a striking Crown Sky Garden on the 11th floor. Designed by world-renown landscape architect Mikyong Kim, the garden combines light, sound, water and wood elements to create an oasis for parents and play areas for kids.

Another unique feature at Lurie Children’s is its creative, child-focused interiors that were designed in partnership with over 20 of Chicago’s premier cultural and civic institutions. In the hospital’s main lobby, families are greeted by near life-size models of a mother humpback whale and her calf that were donated by the Shedd Aquarium, while on the 12th floor, kids can play in a customized fire truck cab donated by Pierce Manufacturing to recognize the hospital’s longstanding partnership with the Chicago Fire Department. Each floor of the hospital has its own creative theme and exhibit. In the NICU lobby, for example, the Adler Planetarium developed an interactive exhibit that invites families to press a button with their baby’s birthday to light up the corresponding astronomical constellation.

  

Now Lurie Children’s is in the process of expanding its inpatient capacity from 288 beds to 360 by November 2019. Twenty beds will be added to the NICU, which will expand to the floor above.

View more (website Ann & Robert H. Lurie Children’s Hospital of Chicago)

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Lung function in children born extremely preterm

Some babies born too early show signs and symptoms later in life that may be long-term consequences of preterm birth. To look at this in more detail, follow-up studies are of great importance. Their results provide a scientific basis for follow-up and continuing care. A study from Sweden recently analysed lung function in 6½-year-old children born at less than 27 weeks. These extremely preterm born children had suffered from immature lungs after birth, and almost all of them had developed Bronchopulmonary dysplasia (BPD), a chronic neonatal lung disease.

Graphic of a baby with highlighted lungsIn total, 178 children from the Swedish national cohort study EXPRESS (Extremely Preterm Infants in Sweden Study) agreed to participate in the follow-up study on lung function (71% inclusion rate). Each of these children was matched to a healthy control born at term, based on date of birth, hospital of birth, sex, and mother’s country of birth. The idea behind such a matched case-control follow-up study design is to compare a specific condition (here: lung function) in two groups that differ in one characteristic (here: preterm birth versus full-term birth) but are otherwise as similar as possible.

All children from both the extremely preterm and the full-term groups were invited to do clinical and lung function assessments. Six controls were unable to reach or declined, resulting in a control group of 172 children.

Among the children born extremely preterm, 40% reported respiratory wheeze or the use of asthma medication in the last 12 months. In the control group, this percentage was significantly lower with only 15%. The results of the lung function tests showed that the children born extremely preterm had reduced lung function compared to the controls. Functional deficits included reduced maximal expiratory flows, lower lung volumes, and altered airway mechanisms. Furthermore, children born at 22-24 weeks of gestation had a 5-10 times increased risk to have a lung function below the lower limit of normal compared to the control group.

A comparison of lung function of preterm born children with BPD and without BPD was not possible to perform. As 90% of the children born extremely preterm suffered from moderate or severe BPD in the neonatal period, the group of children without BPD in the neonatal period would have been too small and the group sizes too unequal for statistical analyses.

The findings of the study suggest that preterm birth and the level of preterm birth have an effect on lung function in childhood. They also provide indications that follow-up and continuing care is necessary not only during but also beyond childhood, to detect and track further long-term outcomes.

Read the original study (Pediatric Pulmonology)

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Against all odds

An interview with Gert van Steenbrugge and his preterm born daughter Anja

Gert and Anja van Steenbrugge

In 1989, Gert van Steenbrugge became father of Anja. Due to the HELLP syndrome her mother developed, Anja was born by cesarean section at 26 weeks of gestation, weighing 800 gr. More than 20 years later, she successfully completed her vocational education and now she works for a well-known restaurant in Voorburg. EFCNI had the chance to ask them some questions about their experiences with the challenges of preterm birth, with a special focus on the topic Follow-up and continuing care. 

How did healthcare professionals and teachers support Anja’s development?

Gert van Steenbrugge: Throughout her life and in specific after care programmes, Anja was supported by a considerable number of professionals, such as – of course – neonatologists/pediatricians, a rehabilitation doctor, physiotherapists, a child neurologist, an audiologist, a speech therapist and an eye doctor who operated her twice for an eye correction. During her time at school, she also received extra support. At the beginning of her professional career, a job coach supported her at the workplace.

Gert & Anja van Steenbrugge (c) private

All in all, we are glad that all these professionals and teachers at schools of special education strongly supported Anja, which resulted in a young adult who has her place in society and enjoys what she has reached.

Anja, is your preterm birth something you deal with often and does it affect you still?

Anja van Steenbrugge: Though my hearing aids and additional equipment are very helpful, my hearing disability has a great impact on my social and professional life. The cerebral palsy causes that my work pace is slower than my colleagues’, and complicated instructions are sometimes hard to understand for me. 

Another typical outcome of my preterm birth is my short stature. I stopped growing at a height of 1.58 m. Thus I’m a small women and I look younger than I am in fact. Years ago at the age of 21, I visited a dance festival, and had to show my identity card, because they didn’t believe that I was 18 years of age. However, I perceived moments like these as funny rather than problematic. Practically spoken, my height sometimes hampers my functioning at work in the kitchen, because I cannot reach objects on higher shelves and need a stool or help of a colleague. The same may happen in the supermarket with items that I cannot reach, so I need help from another customer.

Did Anja have to face obstacles or difficulties in her childhood and youth?

Gert van Steenbrugge: Caused by her preterm birth, Anja has cerebral palsy resulting in several developmental problems. The most noticeable ones are a severe hearing disability (60-75% hearing loss) and physical limitation (mild unilateral paresis). When Anja started school, it turned out that she had cognitive and learning impairments. Particularly imprinting of difficult words and foreign languages was and still is difficult for her. But through learning by practice and at a slower pace, Anja developed well and was able to complete her education as a cook.

Within the first months after birth, when Anja was discharged, the great concern was that she couldn’t hear at all. Therefore, we took her to the audiologist in her first year of life and to our great surprise, after specific tests, Anja showed hearing residues. This offered the chance that she would be able to develop speech, which fortunately happened after many years of intensive training with speech therapists.  

What milestones of her development do you remember?

Gert van Steenbrugge: One big milestone was the fact that, in spite of the prediction of the neurologist, Anja was able to walk normally, although she needed support from physiotherapists for many years. Although the rehabilitation doctor was about to prescribe a customized bike, she even learned to ride a ‘normal’ bike, albeit later than her peers.

In addition, we as parents were very glad that with better prospects of speech she could move from an institute for deaf children to a school for special education of children with hearing impairment. 

At the age of 27, Anja left her parental home and was offered a nice apartment, where she has lived with limited guidance of care providers. This was, for Anja as well as for us as parents, a great and important step in her life. Certainly, it was the ultimate milestone: the moment she started to live independently.

Anja, what are your achievements you are most proud of?

Anja van Steenbrugge: I am most proud that I did well at school and became a cook. I am very happy that, in spite of my limitations, I have a job and was accepted as cook in a well-known restaurant where I can prepare nice dishes for the guests. What I’m also proud of is my nice home, where I can live my own life being independent and do my housekeeping myself.

In addition, I am a member of a patient organisation for youngsters with hearing impairment, where I met friends. I love the activities and weekends with them. Finally, I became a volunteer and help to organise activities, such as a cooking workshop. 

Do you remember specific aftercare routines?

Anja van Steenbrugge: During my life there were numerous doctor consultations, but fortunately, as time went on, it all became less frequent, although reasons for doctor’s visits always remain. Of course, I remember a lot of aftercare moments, among which were painful treatments by the physiotherapists, numerous examinations by the eye doctor and optometrist, and an MRI examination. Oh yeah, I will never forget the day I was in a hospital bed for hours waiting for an eye surgery and heard that the operation was cancelled, because of an error in the operation scheme, causing no anesthetist available. I went home and had to wait another two weeks before the operation was scheduled again.

We warmly thank you for this inspiring and encouraging interview! 

 

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Community Based Newborn Care Package:

A community based approach to reducing neonatal mortality in Nepal

Each year, nearly 35,000 Nepali children die before their fifth birthday, with almost two-thirds of these deaths occurring in the first month of life.1  Experts claim that over two thirds of these deaths could be prevented with relatively low costs and low-tech interventions.2  The Community Based Newborn Care Package addresses these issues within the national health system settings of Nepal. 

While Nepal managed to reduce child and maternal mortality rate by 7.7% respectively 7.5%, slow progress has been made in terms of neonatal mortality rate (3.6%). Around the year 2000, the government has put newborn survival on its political agenda and enforced community-based and public health interventions. Nepal then was the first low-income country in South Asia to have a national newborn health strategy. The so called Community-Based Newborn Care Package (CBNCP) was developed in 2007 and piloted between January 2010 and June 2011 in 10 of 75 Nepali districts under the guidance of the Ministry of Health and Population (MOHP). It is delivered through the Female Community Health Volunteers (FCHV) and Community Based Health Workers (CHW), laywomen who receive targeted training. It comprises 7 health system components aiming at improving both health provider and population behaviour:

  • behaviour change communication for birth preparedness and newborn care 
  • institutional delivery or clean home delivery through skilled birth attendants
  • postnatal care
  • care for low birthweight newborns
  • management of newborn infections
  • prevention of hypothermia
  • recognition of asphyxia, initial stimulation and resuscitation

First evaluations after the 18-month implementation phase have shown a promising development: despite high levels of poverty, poor infrastructure, difficult terrain and cultural conflicts Nepal was on track for meeting the Millennium Developmental Goals for maternal and child health. One could observe that women benefiting from the package had decreased illnesses and complications during pregnancy and birth associated with decreased stillbirths, as well as perinatal and neonatal deaths. In a before and after survey, researchers analysed data from one district to measure the coverage of interventions.  The survey demonstrated that coverage for both maternal and neonatal services had significantly increased as well as counselling to pregnant women by the FCHV, practice to prepare for birth, and antenatal check-ups from a skilled provider. Delivery assisted by a skilled birth attendant had increased by two-fold. FCHV attendance at birth for newborn care significantly increased by three-fold. Prevention from hypothermia and ensuring proper nutrition has considerably improved, too. Additionally, weighing of newborns delivered at home within 24 hours had increased by four-fold. Postnatal check-ups for mothers and newborns by FCHV, CHW and health facility workers have risen by more than 90%. 

A new quasi-experimental follow-up study from 2017 evaluating the impact of the CBNCP has now concluded that in order to maintain and eventually accelerate the positive effects of the intervention certain steps need to be taken. For example, supervision, frequent training and monitoring of the FCHVs as well as including private providers in the package are regarded as inevitable. Adjusting the components of the package to the real-life situation of mothers and infants in the different districts is another important point highlighted by the study especially since Nepal has a very heterogeneous society with pregnant women living in all sorts of social, economic and geographic conditions. 

Covering now 39 districts, the CBNCP has, together with a general decline in the birth rate and improvements in female education, contributed to reducing newborn and maternal mortality in Nepal.3 

1 Pradhan, Y.V. et al., 2012.
2 Paudel, D. et al., 2017.
3 www.nepal.savethechildren.net (21.03.2018). 

View more: 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5640009/ (Study from 2017)
https://www.ncbi.nlm.nih.gov/pubmed/22692416 (Study from 2012)
http://jnhrc.com.np/index.php/jnhrc/article/view/276/274 (Study from 2011)
https://nepal.savethechildren.net/about-us/health-and-nutrition (Website Save the Children, Nepal)

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The “travelling NICU”

Transport of high-risk neonates in Portugal

A guest article by Professor Hercília Guimarães NICU, Centro Hospitalar São João, Faculty of Medicine, University of Porto, Porto, Portugal Alameda Professor Hernâni Monteiro, Porto, Portugal

What was the idea behind your project and what was the starting point?

The transport system of high-risk newborns in Portugal was established in 1987 in the context of regionalisation of perinatal health care in the country. In Portugal, the network of perinatal healthcare works as follows: 
1) Level II hospitals transfer mothers or newborns to level III hospitals in their area; 
2) the very low birth weight infants are born in level III hospitals; 
3) all transfers of pregnant women and newborns are carried out taking the geographical area, the pathology and the availability of places into consideration. 

Hence the exchange between the level II and III hospitals is well-coordinated. This allows for organising transport of newborns back to a level II hospital as soon as intensive care in a level III neonatal intensive care unit (NICU) is no longer necessary. In order to transport critically ill newborns between NICUs within the country, a subsidiary service of the National Institute for Medical Emergence called INEM, was provided exclusively whenever in uterus transport was impossible. This ambulance is so well equipped that it seems like a “travelling NICU”. However, for long distances, air transport is used. The transfer of pregnant women is always better because we know that outborn (i.e. delivered) infants have a worse prognosis compared to inborn infants. However, neonatal transport is essential and a valid alternative to the best transport for the newborn, the mother’s womb.

image: Ambulance in Portugal (c) INEM

How was the idea put into practice?

In September 1988, hospitals and INEM signed an agreement, and the first guidelines for the transport of high-risk newborns were written down. The doctors and nurses who collaborated in neonatal transport were doctors and nurses of the NICUs in the country. The standards for the transport of newborns were prepared, namely the schedule for all hospitals involved, the transport instructions, such as the indications, contraindications to the transport and the coordination.   

Which challenges did you face?

Until 1993, some incidents were reported; some of them related to the poor access to hospitals and qualified medical services. The lack of paediatricians or physicians with experience in paediatrics, was still a frequent reason for the transfer of newborns at risk. Another challenge we faced was the insufficient number of doctors collaborating in neonatal transport, due to the disproportion between the admission and the exit of the doctors of the central hospitals, discontinuing the medical scales. 

Which changes where achieved?

After 1994, a new agreement among the INEM central hospitals was signed in order to improve the transport of high-risk infants. The standards for the neonatal transport were reviewed. All neonatal transports are up to date done by a paediatrician and a nurse, trained in neonatal intensive care, while this extra work is often performed on a voluntary basis. During this period, the transport team had an important mission to train professionals in hospitals and great improvements in healthcare for newborns allowed for an improved stabilisation and a decrease in complications during transport. 

Before the transfer, the team showed the newborn to the mother, took a picture of the baby and gave the mother the photograph. The father and other family members could follow the ambulance in their own car. These aspects, at that time (in the 1980s) corresponded to family-centred care (FCC), an approach that is so widely spread today. 

Being a standard nowadays, FCC during acute neonatal transport should be optimised in a way that parents become active participants in the care of their infants, even during the transport process. In a recent study, approximately 40% of parents felt they had received adequate information about their infants’ care during the transport, but 40% cited separation. Applying FCC core concepts during the neonatal transport has been shown to be increasingly important to parents and may facilitate communication and help them become active participants in their child’s’ care. These simple attitudes have a very positive effect on perinatal healthcare and should be reinforced. 

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When every second counts

IVENA eHealth in the ambulance service sector

A guest article by Roland Dollmeier, Managing Director of the Munich Emergency Services Association (Rettungszweckverband München – RVZ)

The iPortrait_Roland_Dollmeiernterdisciplinary medical supply compass (in German: Interdisziplinäre Versorgungsnachweis IVENA) was introduced in spring 2013 by the Munich Emergency Services Association (Rettungszweckverband RZV) to facilitate the management of assigning patients to appropriate hospitals for the emergency service in Munich. All necessary steps were implemented with decisive support of the Medical Directors of Emergency Services. The decision to obtain the IVENA system was motivated by time delays in the transfer of emergency patients to receptive hospitals in the rescue service area of Munich.

In a large number of cases, rescue vehicles with comprehensively medically supported and therefore fit for transport emergency patients on board, were forced to wait for a long period of time until the assignment to a receptive hospital by the “Integrated Control Centre” (Integrierte Leitstelle ILS) Munich. The reason for this was that previously, the ILS employees had to enquire by telephone at the clinics suitable for further treatment to check if there were enough capacities available to admit these patients. This resulted in unacceptable delays in the rescue chain.

IVENA is a web-based software programme which allows hospitals to display their current healthcare capacities to the dispatchers at the ILS without any delay. This information is particularly interesting with regard to severely injured or critically ill patients of all age groups. The system can be individually tailored to the respective medical support structures of the connected hospitals.

At a single glance on the IVENA screen, the ILS dispatchers can tell which hospital closest to the emergency location has capacities available, e.g. a neonatal intensive care unit for preterm or newborn children or a chest pain unit for heart attack patients. 

An important aspect in the introduction of the system was the compliance of the clinics in the jurisdiction of the RVZ.

Within a short period of time, the clinics’ representatives were convinced of the reasonableness of this innovation, so that hereinafter the objective was to assure a most comprehensive mapping of existing hospital facilities. Hereby it was important to create a balance between depicting a differentiated description of the individual medical centres, and a user interface that is straightforward and easy to operate.

After using the system for almost five years, it has proven successful. Hospital assignments can now be performed within a fraction of the time once needed. By now, up to 400 transfers in 24 hours can be processed through the assignment system. Besides the Bavarian cities of Munich, Nuremberg and Aschaffenburg, IVENA eHealth is also operating in Berlin, in parts of the federal state Hessen and in the federal state Brandenburg.

All of the operators are in constant dialog with the developers of the software (mainis IT Service) and substantially contribute to the further development of the programme features.

Screenshot IVENA eHealth

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