DAYTIME SESSION SPEAKERS

 

Leah Whitehead – co-host

 

Leah Whitehead is a mother of three – a literal dream come true! Leah’s first baby was born at 28 weeks and she spent 10 weeks in NICU. From her lived experience, Leah, alongside another NICU mom and two social workers put their experiences together and created a peer support program. This program has been contributing to system change and engaging volunteers for nearly eight years. Leah has an Honours Journalism Degree and is passionate about what we say, how we say it, and healthy relationships.

 

 

Fabiana Bacchini – co-host

 

Fabiana is the Executive Director of the Canadian Premature Babies Foundation, CPBF. She is a journalist and the published author of From Surviving to Thriving, a Mother’s Journey Through Infertility, Loss and Miracles.

 

While in the NICU with her surviving twin, born extremely preterm, she participated in the study of Family Integrated Care (FICare). This led her to the extensive volunteering in the NICU at Mount Sinai Hospital and to become an ambassador for FICare, travelling across Canada and internationally to share her experience with this model of care. Her son was diagnosed with cerebral palsy which continued to empower her to be a strong voice and advocate for premature babies and their families.

Currently, Fabiana serves as an advisor on the International Steering Committee for FICare, Child-Bright Network, PREMSTEM, and she is also on the advisory board of the Canadian Institute for Health Research, CIHR- IHDCYH.

 

 

Silke Mader

 

Bio:

Silke Mader is the Chairwoman of the Executive Board and co-founder of EFCNI, the European Foundation for the Care of Newborn Infants. 

In 1997. Silke’s twins were born in the 25th week of pregnancy. Silke Mader and her family did not receive the information and support she needed. Unfortunately, one of them died a few days after birth. During her time in the hospital and afterwards, Silke was faced with the non-existence of support of any kind, the absence of public awareness, and the lack of information and education for parents during pregnancy. Her motivation is to prevent parents from having similar experiences in such painful situations. As conditions throughout Europe are distressingly similar and preterm children urgently need a voice within Europe and worldwide, she decided to take on the role of chair on the Executive Board of EFCNI.

 

Silke Mader is co-editor of the EFCNI Benchmarking Report “Too little, Too Late? Why Europe Should do more for Preterm Infants”, “Caring for Tomorrow” – the EFCNI White Paper on Maternal and Newborn Health and Aftercare Services. She is also the technical editor of the “Born too Soon” Global Action Report on Preterm Birth. Besides this, Silke Mader is author and editor of many other publications on topics related to maternal and newborn health.

 

Topic: 

ACT NOW! Keep Parents and Babies Born too Soon Together.

 

Summary:

During the pandemic, EFCNI received many calls for help and support from our parent organisations about its serious affects.  We (through GLANCE) joined forces with partnering parent organisations, healthcare professionals and medical societies all over the world to develop a long-term campaign to continuously support parents of hospitalised newborns and healthcare professionals in neonatal care units with the aim to enable infant and family-centred developmental care in line with COVID-19-precautions. Separation policy for all babies born is not the solution. Separation is indeed harmful, and this is evidence based. Therefore, our global theme for this year’s World Prematurity Day is: Zero Separation. Act now! Keep parents and babies born too soon together.

 

 

Dr. Johanna Kostenzer

 

Bio:

Dr. Johanna Kostenzer, PhD is Head of Scientific Affairs at the European Foundation for the Care of Newborn Infants (EFCNI) in Munich, Germany. Her current projects focus on the impact of COVID-19 on neonatal care and on the need for regulation of donated human milk in the European Union. With her academic expertise in the field of reproductive health and health governance, Dr. Kostenzer supports EFCNI’s mission to pave the way for the best start in life.

 

Topic:

Special/Intensive Care for Newborns During Covid 19 – A Parent’s Perspective

 

Summary:

The talk will highlight findings of a global study that explored parents’ experiences regarding COVID-19 and related disruptions and restrictions on different elements of infant and family-centered developmental care. Dr. Kostenzer will outline parents’ experiences regarding prenatal care, parental access, infant nutrition and breastfeeding, health communication, and mental health during the first year of the COVID-19 pandemic.

 

 

Arthena MacDonald

 

Bio:

Arthena MacDonald has worked as a Neonatal Nurse Practitioner in the IWK NICU for 20 years. She is passionate about creating meaningful relationships with families and fellow staff members. Arthena is known for coming up with innovative ideas that lift up the neonatal team and create a supportive environment. She lives in the Halifax area with her husband David and three amazing boys.

 

Topic:

Involving parents in the NICU: a nurse's perspective

 

Summary: 

When Arthena first started working in the IWK NICU more than 20 years ago, she used to follow the best practice at the time: protecting babies from all kinds of stimulations, sometimes leading to cutting parents out of their chikd’s care. Over the years,  Arthena converted to someone who advocates for the well-being of the entire family in the NICU. She is now a NICU champion who challenges all those around her to value and prioritize the power of relationships. In this presentation, Arthena will be sharing some of the magic behind her passion as a NICU NNP. 

 

 

Professor Luc Zimmermann

 

Bio:

Senior Medical Director EFCNI, Munich, Germany, and Professor of Paediatrics and Neonatology at Maastricht University Medical Centre in The Netherlands. He’s also the Program Leader of Reproductive and Perinatal Medicine in Research Institute GROW. His ambition is to implement the European Standards of Care for Newborn Health across Europe and to improve the situation of mothers and newborn infants while ensuring more equal care in Europe. 

 

He is involved in several international research projects, representing EFCNI, such as the PREMSTEM project. As a Belgian, he studied medicine and did his pediatric training in Leuven, Belgium. After his fellowship in neonatology in Toronto, Canada, he worked as a staff neonatologist and Chief of Neonatology at the Sophia Children’s Hospital, Erasmus MC, Rotterdam. In 2003, he moved to Maastricht and worked as a staff neonatologist (2003-2019), Chief of Neonatology (2005-2017), and Chairman of the Department of Paediatrics (2006-2019) at Maastricht UMC+. He is a past president of the European Society of Paediatric Research (ESPR). From an early stage in his professional career, he developed a distinct research interest in the development of the preterm lung, on which he did his Ph.D. and continued his further research. His research topics have widened in the last several years and the strategy of his department focuses on academic family integrated care.

 

Topic:

PREMSTEM: the exciting stem cell therapy for brain injury of preterm infants.

 

Summary: 

More than 15 million babies are born preterm every year and many suffer a long-term disability due to brain damage.

The last weeks of pregnancy are a time of astounding growth and change for an unborn baby’s brain. Disturbances in the brain’s growth, such as due to premature birth, can result in cerebral palsy, severely impaired cognitive functions and disorders such as attention deficit and hyperactivity disorder (ADHD) and autism spectrum disorder (ASD). 

Stem cells have a huge potential to ameliorate or decrease the burden of these long-term problems.

PREMSTEM is focused on delivering the clinic a novel regenerative therapy to reduce the enormous emotional, health, and economic implications of neurodevelopmental injury caused by encephalopathy of prematurity (EoP) – brain damage associated with premature birth (i.e., before 37 of 40 weeks of gestation).

 

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Steven Miller

 

Bio:

Dr. Steven Miller is Head of the Division of Neurology and the Centre for Brain & Mental Health at the Hospital for Sick Children, Professor of Pediatrics at the University of Toronto, and Senior Scientist in the Neuroscience & Mental Health Program at the Research Institute of SickKids. He holds the Bloorview Children’s Hospital Foundation Chair in Pediatric Neuroscience.Dr. Miller and his team focus on improving the clinical care of newborns requiring intensive care such as those born preterm or with congenital heart disease. Findings from his research program inform new strategies to promote optimal brain development and neurodevelopmental outcomes. Most recently, he co-directs Child-Bright (https://child-bright.ca/), an innovative pan-Canadian network that aims to improve outcomes for children with brain-based developmental disabilities and their families through Canada's Strategy for Patient-Oriented Research (SPOR).

 

Topic:

What’s on the horizon for brain research related to children born preterm?

 

Summary:

We will discuss exciting new avenues in brain research relevant to children born preterm. This will include attention to patient oriented research and to addressing social disparities as they relate to the developing brain.  We will discuss the potential of new technologies and “big data” to inform scientific discovery in the years ahead.

 

 

Emanuela Ferretti

 

Bio:

Dr. Emanuela Ferretti received her MD degree and specialty in Pediatrics and Neonatology from the University of Milan (Italy). Her postgraduate medical training included clinical and research fellowships at the Hospital for Sick Kids in Toronto and the Montreal Children’s Hospital-McGill University. She is Full Professor of Pediatrics at the university of Ottawa and a neonatologist at the Children‘s Hospital of Eastern Ontario (CHEO) and The Ottawa General Hospital. Since she joined the University of Ottawa in 2007, she has been a co-leader in implementing an innovative Neonatal Ethics Teaching Program focused on parent-physician communication skills for postgraduate trainees: this program has been embraced by three European Universities. Her research interests include an ongoing multicenter CHIR funded study on the development of the immature human intestine and the genetics underlying necrotizing enterocolitis (NEC) as well as the impact of different molecules and drugs on the premature gut.

 

Topic:

Exploring Neonatal Pain 

 

Summary:

This session will touch on important points of what we know today about neonatal pain, which kind of approach and strategies are being used in our NICUs to recognize, treat, and monitor it. It will give some promising future perspectives about increasing our knowledge of neonatal pain, its individual variability, and its appropriate management. 

 

 

Dr. Douglas Campbell

 

Bio:

Dr. Campbell is currently the Director of the Neonatal Intensive Care Unit & Deputy Chief Pediatrics at St. Michael’s Hospital. He is cross-appointed at the Hospital for Sick Children where he works regularly as a Staff Neonatologist. His academic interests include resuscitation of the neonate and the use of simulation as a toolkit for healthcare organizations. He is the Medical Director of the Allan Waters Family Simulation Centre at St. Michael’s Hospital. His academic rank at the University of Toronto is that of an Associate Professor within the Department of Pediatrics. Furthermore, he has been appointed to as an Associate Scientist at the Li Ka Shing Knowledge Institute at St. Michael’s Hospital for his academic work in simulation.

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He is a past member of the Canadian Pediatric Society National Resuscitation Program (NRP) Executive Committee and Past Chair of the Canadian NRP Research Committee. His simulation education and experience has formed a large part of his academic career as an educator, administrator, and researcher. He received simulation training at Stanford University at the Center for Advanced Perinatal Education (CAPE).  He is also the Simulation Lead for the University of Toronto, Faculty of Medicine. International recognition for his work in simulation has included election to the Board of Directors of the International Pediatric Simulation Society (IPSS).

 

Topic:

A New Way to Help Babies Breathe? Hope is on the Way.

 

Summary:

Dr. Campbell will present a new project investigating a new way of breathing support for the preterm infant. “Instead of nasal interface as a way to provide CPAP, we are investigating the use of a vest that fits around the lower chest and abdomen. With advances in technology, we are now using negative pressure support to assist the breathing efforts of the infant. The negative pressure vest may be able to offer both parents and clinicians hope, in that babies’ faces will be free of devices to help them breathe. We   anticipate potential benefits in neurodevelopment and oral-motor feeding capabilities, as well as allowing parents to bond better with their babies in the NICU, as their lungs develop and mature.”

 

 

Patrick McNamara

 

Bio:

Patrick McNamara graduated from Queens University Belfast in 1987, received his MRCPCH in Pediatrics in 1997 and a Certificate of Completion of Specialist Training in Neonatal Medicine in 2002. He is currently a Staff Neonatologist, Director of the Division of Neonatology and Vice Chair for Inpatient Acute Care at the University of Iowa Stead Family Children’s Hospital and Professor of Pediatrics and Internal Medicine, University of Iowa. He is the current chair of the PanAmerican Hemodynamic Collaborative and Paediatric Academic Society Neonatal Hemodynamics Advisory. His clinical and research interests include myocardial performance in the settings of a hemodynamically significant ductus arteriosus, pulmonary hypertension, and targeted neonatal echocardiography. 

 

Topic:

Hemodynamics and Enhanced Care of Extremely Preterm Babies

 

Summary:

Survival of extremely premature infants has increased  over the past years, with the greatest advances in infants born between 22-24 weeks gestation. The relationship of the immature cardiovascular system to poor preterm health and abnormal outcomes has been the subject of limited scientific evaluation and therefore medical progress has been impeded. The establishment of neonatal hemodynamics programs, where neonatologists trained in the art of comprehensive echocardiography, use bedside imaging to perform longitudinal patient evaluations. The impact of enhanced diagnostic precision includes a better selection of cardiovascular treatments, based on actual physiology and disease. The transitional period, after birth, represents a time of major changes in cardiovascular physiology as the newly born infant navigates the challenges of physiologic adaptation. Impairment in cardiovascular performance during the transitional period places the infant at increased risk of compromise to vital organs and the brain. At the University of Iowa, which has the highest rate of survival of any other center in the Vermont Oxford Network, targeted neonatal echocardiography is performed as a routine standard of care between 12-18 hours in all premature infants born less than 27 weeks gestation. The impact of these changes includes earlier identification of cardiovascular instability and enhanced precision in the selection of more physiologically appropriate treatment. Neonatal outcomes have been enhanced as a result of this program change. 

 

 

Amy Thatcher

 

Bio:

Amy Thatcher is a professional accordionist based in the northeast of England. She has worked with great names, such as Kathryn Tickell, Sting, and The Royal Northern Sinfonia. In 2019, Amy had her twins, Gwen and Jay, who were born almost 11 weeks early.

Amy was on tour in Europe, with her band The Shee, when she had to go to a hospital, in Berlin, to get checked. She was 27 weeks pregnant and it became clear that she was having contractions and would need to be in the NICU. Three days later, on October 26th, 2019, 10 weeks and 6 days early, Gwen at 1370g and Jay at 1450g, were born.  Considering the circumstances, the babies were very healthy, but they had to spent the first 52 days of their lives in Berlin. Reflecting on this journey, Amy wrote ‘Look at you now’, the headline track of her new EP.

 

Topic:

Prematurity and Creativity

 

Summary:

Amy will talk about the importance of sharing her experience of giving birth prematurely, through music.

 

 

Hugh Robertson

 

Bio:

Hugh and Mercedes Robertson are the proud parents of two hockey players: Jason, from the Dallas Stars, and Nick, from the Toronto Maple Leafs. Nick, the youngest, was born prematurely  at 28 weeks, on September 11, 2001. He was immediately put on life support and spent three months in the NICU. His parents were not sure if he would survive or what quality of life he would have. They believed in the NICU staff and now, 20 years later, can watch Nick, like his brother, play as a professional in the NHL. 

 

Topic: 

From NICU to the NHL: How the Robertsons saw their preemie son survive and thrive.“

 

Summary: 

Hugh and Mercedes Robertson will talk about the difficult days in the NICU when their son Nick, today a Toronto Maple Leafs player, was born prematurely. 

 

 

 

Kathy King MacLean and Breagh MacLean

 

Bio:

Breagh MacLean

 

Breagh MacLean was born in 1987, at 23 weeks gestation. She spent the first 6 months of her life in the neonatal unit. When discharged, she came home while being tube fed and on home oxygen.  The home oxygen continued for 2.5 years.  She was diagnosed with learning disabilities in grade two. With determination, she graduated high school and Community College, with a diploma in Office Technology. Today, Breagh works as a Mail Clerk with the Government of Nova Scotia and appeared in a video of a provincial campaign to raise awareness about invisible disabilities. 

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Kathy King MacLean

 

Bio:

When Breagh was born, Kathy was a 31-year-old working Mom. She decided to save her maternity leave for when Breagh was discharged. Every day, Kathy was with her daughter at the NICU from 5 am to 8 am, and from 5 pm to 8pm, going to work in between. Kathy discovered later that the EI rules at that time stated that if Breagh was not discharged by her due date, Kathy would lose her maternity leave. She challenged the rule, the media became involved, and after some time, it was changed. But Kathy didn't return to work for many years after Breagh came home. Breagh was in and out of the IWK for the first 10 years, with health issues such as pneumonia and chronic lung disease.  Her premature birth made her very vulnerable.  School was a challenge, but Breagh was always a determined little girl. She worked very hard for her successes. Her mom and dad are incredibly proud of her.

 

Topic:

A story of resilience and determination – an interview with an adult preemie and her mother.

 

Summary:

Mother and daughter share their experiences and discuss the challenges they faced because of Breagh’s prematurity.

 

 

Rebecca Thomas

 

Bio:

Rebecca Thomas is the Clinical Leader at the Neonatal Intensive Care Unit at the McMaster Children’s Hospital in Hamilton, Ontario. She began working as a Nurse at McMaster’s NICU in 2005 and delivered her son prematurely in 2014. Her journey in leadership started in 2015.  She now functions as the lead for the NICU Family Advisor team on unit capacity management and patient flow, human milk preparation space, and is in the team and co-chair the NICU Nutrition Committee. She serves as a director on the board of the Canadian Association of Neonatal Nurses and chairs the CANN Professional Development Committee. Her experience as a NICU Parent informs each decision she makes and every initiative she participates in.  Her son is now 7, in grade 2, and loves building, reading, and painting.

 

Topic:

From NICU Nurse to NICU Mom: How the birth of my son changed

my perceptions and practice.

 

Summary:

Rebecca will share her experience as a neonatal nurse and as the mother of a preterm son. She will speak about lessons learned from the other side of the curtain and her AHA moments in the first 24 hours after delivery and beyond.

 

 

Marsha Campbell-Yeo

 

Bio:

Dr. Marsha Campbell-Yeo, a neonatal nurse practitioner and clinician-scientist, is a Full Professor at the School of Nursing, Faculty of Health, Dalhousie University and holds cross-appointments in the Department of Pediatrics, Psychology, and Neuroscience. Her Canada Foundation of Innovation funded research lab, MOM-LINC is located at the IWK Health Centre holds grants examining maternally led interventions to improve outcomes of medically at-risk newborns related to pain, stress, and neurodevelopment, as well as novel knowledge synthesis and dissemination methods, and digital e-health interventions aimed at enhancing parental engagement. Invited as a member of the Royal Society of Canada's College of New Scholars, Artists and Scientists, recipient of the Inaugural Dalhousie University President’s Award for research excellence, named one of 150 Nurses championing innovation in health for Canada by the CNA, Awardee of the CIHR New Investigator, and Canadian Pain Society Early Career, Career Development of the Canadian Child Health Clinician Scientist Program. Currently the Treasurer and Council Member of the Pain in Childhood Special Interest Group (International Society for the Study of Pain) and Executive member of the Council of International Neonatal Nurses.

 

Topic:

Restoring equitable family presence across Canadian NICU’s during the COVID-19 pandemic: Hope, Advocacy, and a Co-created Response

 

Summary:

Despite almost two decades of research demonstrating the significant benefits of parent presence in the NICU on infant and parent outcomes, response to the COVID 19 pandemic literally closed the door on this evidence and families. Moreover, much of the trust built with parents as essential providers and partners with NICU care teams have been severed. In this presentation, Dr. Campbell-Yeo will provide a brief overview of her experiences and research fostering parental presence in the NICU in a pre and post COVID era. Lastly, Dr. Campbell-Yeo will present an overview of a recently funded national study, co-led with the Canadian Premature Babies Foundation, and their team’s hope for restoring and ensuring equitable family presence and engagement across Canadian NICUs in response to the COVID 19 restrictions.

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EVENING SESSION SPEAKERS

 

Dr. Deepak Louis

 

Bio:

Dr. Deepak Louis is a Neonatologist and Assistant Professor of Pediatrics and Child Health at University of Manitoba. He is a clinical researcher at the Children's Hospital Research Institute of Manitoba (CHRIM). His research program aims to study the impact of prematurity on the long-term outcomes of children and their families including their siblings. He is specifically interested in the mental health of parents of preterm children. 

 

Topic:

Mental health of parents of preterm children: What we need to know and what can be done?

 

Summary:

Dr. Deepak Louis will focus on the type of mental disorders common among parents of children born preterm, how they evolve with time and some of the potential strategies to tackle them. 

 

 

Kate Robson

 

Bio:

Both of Kate’s daughters were born preterm; one was a 500 gram 25 weeker born in 2005, and the other came at 32 weeks in 2007.  Inspired by her own experiences, she came back to the NICU in 2010 to work with families as a Neonatal Intensive Care Unit Family Support Specialist. Since then, she has developed programs for hospitalized families and trained peer counsellors across Canada.  She went back to school in 2018 to become a therapist, and now has a private practice in Toronto where she offers support to NICU parents and clinicians.

 

Topic: 

“Where do I need to be right now?”

How befriending your nervous system can help you in the NICU (and long after)

 

Summary:

Therapist and NICU parent Kate Robson explores what happens to our minds and bodies when we’re in the NICU with our babies, what we can do to cope, and how we can help ourselves and our children recover & restore once we’re home from the hospital. 

 

 

Jimmy and Janeeta Gill

 

Bio:

Jimmy and Janeeta are parents to Jack who was born at 27 weeks gestation in February, 2020. They spent 104 days in the NICU.

 

Topic:

Parents share their NICU journey and how they coped with it.

 

 

Aruna Boodram

 

Bio:

Aruna Boodram is the autonomous parent of Surya Amaris, a micro-preemie who spent 90 days in a level 3 and level 2 NICU. She was discharged at the beginning of the pandemic, in March 2020. 

 

Topic:

A parent reflects on their journey with preterm birth during the pandemic.