Supporting Families through Therapeutic Hypothermia and their journey with Hypoxic Ischemic Encephalopathy
Summary
This RNAO ACPF was an opportunity to gain an understanding of one of the most traumatic birth experienced faced by families in the Neonatal Intensive Care Unit and develop resources to help those families cope. In 2020, I attended a NeuroCritical Care workshop at Alberta Children’s Hospital (ACH) in Calgary and I was able to see some of the resources they offer their families of babies undergoing 72 hours of therapeutic hypothermia (TH), also known as cooling, after a traumatic birth resulting in Hypoxic Ischemic Encephalopathy (HIE). I studied the effects of traumatic birth on parental stress levels after delivery. Parents grieve the loss of their expected birthing experience and the ideal neonatal period with a healthy newborn. They are left reeling, separated from their infant, trying to understand a whole new medical vocabulary, in physical pain, and feeling a loss of control (2). This can be overwhelming and lead to delayed bonding opportunities and increased parental stress (3). I wanted to create ways in which parents could access accurate information about their infant’s condition in a time and space when they are receptive to it. Through the fellowship, I was able to create several new supports for families of these critically ill babies, including a new section on HIE in our online NICU family guide- including information and resources- a Bravery Beads program, Cool Cubs for comfort, a policy for Cool Cuddles, and a teaching guide for nurses regarding neuroprotective care and how to HIBERNATE in the NICU. The outcomes of this fellowship will have a positive impact on families for many years to come.
Outcomes
Based off the nursing care model from Alberta Children’s Hospital, I introduced the HIBERNATE model to our team at CHEO. In this model, hibernate is an acronym in which each letter represents a different aspect of neuroprotective care when a baby is undergoing therapeutic hypothermia. It also draws on a familiar comparison whereby the cooling infant is very similar to a hibernating bear; both lower their core temperature, slow their heart rate, and decrease their metabolic rate to conserve energy. In cooling babies, this helps limit swelling and further brain injury. This simple comparison makes a very scary subject tangible for families who are going through this traumatic experience.
I created a new section in our online NICU family guide to provide families access to NeoBrain Parents, a website created by Montreal’s Dr. Pia Wintermark which explains in very simple language what is HIE, how it is treated, and what to expect in hospital and beyond. A link to Hope for HIE was added; a website which creates a network of parents undergoing a similar journey which can provide parents with long-term outcomes and resources in a way that is easy to understand.
Another new program for our NICU, introduced through the fellowship, is Bravery Beads. This program gives parents control over one element of their child’s care at a time when they have very little control. It validates everything their child is going through as a bead is earned for each test, procedure and milestone in their hospital stay. This physical representation of their journey creates a story to last a lifetime and has been very well received by the unit and our families. Funding from the RNAO and the CHEO Foundation helped with the initial start up costs. The beads were acquired through a new partnership with the John Bead Company who currently provide beads for Toronto’s Sick Kids Hospital. We were able to align our bead legend with Sick Kids so families who travel between the two hospitals can have a consistent meaning for each bead. Due to popularity, this new initiative has been offered to all families in the NICU who feel a loss of control when their baby is critically ill; however, there is a specific bead for babies who are cooling.
Finally, I wrote a new policy to support Cool Cuddles in the unit, or holding of an intubated and cooling baby. This gap in procedure was very much lacking, as nurses had never had a policy for holding intubated patients and there are several steps and decision-making points to consider. The new policy supports parental cuddles with critically ill patients which, although logistically difficult, cuddling of these infants provides numerous and well-studied benefits for both baby and parent (1). This practice change in our unit has potential to reduce parental stress, strengthening parental-baby bond, increase mother’s milk supply, and overall decrease length of stay in these infants (3, 4, 5). This change in practice does require safer chairs for the hold, which provide non-rocking (stationary) and foot support. CHEO’s NICU currently only has straight-backed gliding chairs. A request for purchase has been made, however, the budgeting for new chairs was outside of the fellowship and is still to be completed. To represent the baby’s hibernation and to offer comfort when parents are unable to cuddle their baby, we purchased a two-year supply of stuffed polar bears with a custom t-shirt reading “cool cub” and CHEO’s logo. The logo was designed by CHEO’s Media House and is available in both french and english.
Outcomes for families:
- Access to learning and clear, consistent information about hypoxic ischemic encephalopathy and therapeutic hypothermia which are available online for parents to determine best time and place for them to review.
- Access to parent networks to connect with other families who have been on the same journey
- Improved bonding and stress reduction through Cool Cuddles and nursing staff encouraging parental involvement in their baby’s care
- Expanded upon work completed in my 2020 ACPF, in which I created an online NICU Family Guide. I was able to create a comprehensive update to the website and add a new section that supports families of babies with HIE available in english at www.cheo.on.ca/NICUguide and in french at www.cheo.on.ca/guideNICU
- Sense of control and validation through Bravery Beads. Families can create a lasting memory of their NICU journey.
Outcomes for nurses:
Education presented at NICU Skills day to promote neurocritical care and how to incorporate neuroprotective care into their practice
HIBERNATE method to guide care of patients undergoing Therapeutic Hypothermia
Resources to provide families on HIE and cooling.
Policy to help in decision-making of which patients are suitable for Cool Cuddle and methods of supporting modified holding when appropriate. Step by step guide to facilitating a parental hold.
With significant nurse turnover in CHEO’s NICU at present, these consistent resources for parents also serve as a teaching toolkit for nurses.
Nurses were able to attend one of two NICU Skills Days and receive 1-hour presentation on NeuroCritical Care of infants undergoing therapeutic hypothermia and new resources available in unit’s Cheat Sheet binder for them to reference.
Outcomes for babies:
Consistency in care related to neuroprotective practices.
Bravery beads to tell the story of all they went through in their first few days and weeks.
Improved outcomes with cool cuddles supported by policy.
New room signage which identifies their need for a neuroprotective environment. Signage says “quiet please…I’m hibernating” and indicates rewarming time and as a cue to those in the room to maintain a quiet environment.
Increased parental involvement while cooling.
Overall experience
This fellowship has been a wonderful opportunity and it is so gratifying to see all of the products of this work being so well-received. There were many concurrent components to juggle. As such, I developed my project management systems. I was grateful for the RNAO’s flexibility and understanding when a provincial pediatric viral surge in the winter of 2022 forced a 3-month delay in the completion of my work. As a result, I feel empowered to make positive changes in my unit. It has been extremely rewarding to see other nurses excited about offering these resources. Even more so, it’s been an honour to see families finding comfort in the cool cubs and empowered by obtaining beads for their little hero throughout their journey. These programs have brought positive energy and excitement to a time that is always very stressful, and this was especially important after going through a very trying viral season at our hospital.
We have an unprecedented number of new staff in CHEO’s NICU and my RNAO fellowship experience has also shown new staff that they can make a difference and seek out opportunities for change. Many new nurses have commented to me that they didn’t realize any nurse can take on projects and learning like this. I feel privileged to serve as an inspiration to these new nurses to strive for evidence-informed change and progress in their practice. Many thanks to the RNAO for supporting my professional development and learning through this opportunity. I’m proud of the growth and learning I’ve experienced over the last year and of the results I’ve been able to share with families and fellow nurses.
