By Carolyn Leighton-Hilborn
Canada is now about 2 weeks into dealing with the outbreak of COVID-19. Canada has acted swiftly to address the health concerns of its citizens, especially the most vulnerable, including immunocompromised and the elderly. Hospitals are having to adapt their policies to the ever-changing information about this new virus. One place that is hard hit by policy change is the Neonatal Intensive Care Unit, where healthcare practitioners care for sick and premature babies.
Families don’t typically expect to find themselves in a NICU following the birth of their child, and they don’t plan on it taking place during a worldwide pandemic. Many NICUs are having to reduce the number of people allowed into the NICU, meaning one parent per child. Families in NICUs are having to choose whether mom or dad goes to the hospital to care for their new baby in the NICU. So, while Canadians are having to social distance, self-isolate and quarantine in their homes, families in the NICUs have another level of isolation to manage.
We spoke with Kasia Pytlik, clinical social worker in the NICU at Mount Sinai Hospital, Carolyn Leighton-Hilborn, mother of three prematurely born children and member of the CPBF team, and Pam Kai, mother of a prematurely born child and Peer Mentor at Alberta Children’s Hospital in Calgary, to get their tips for managing isolation.
Stay social and engaged, even if from a distance
Kasia explains that staying connected to people, whether you are experiencing isolation in the NICU or at home for the purpose of social distancing, is imperative. Over the past few weeks since the health threat of COVID-19 was declared a pandemic, hospitals have had to take the step of cancelling NICU peer parent programs which are typically offered in group settings.
So how is this unprecedented situation being handled?
Kasia explains that hospital staff are working hard to keep the parents of babies in the NICU involved in the care and information about their babies. Things like designated times for “e-visits” and “e-rounds” are being offered to parents at this time, as many hospital units are asking that only one parent be present by baby’s bedside. Often it is the mother who will be the designated parent coming into the NICU, as she is likely working to learn to breastfeed. Kasia says the opportunity to check in through live video feeds and appointments enables a parent to feel connected to their child, as well as an active participant in the regular care of the baby.
While Carolyn was in the NICU with her twin sons, she found relief through conversations with friends, even if they took place over things like Facebook. She began to write a blog and post photos and updates for friends and family to see, just as she would have had they been born at term. She felt connected and supported, even while living outside her hometown and far from her support network.
Although this is a challenging time for all, especially parents with a child in the NICU, parents are getting “to a place of understanding”, says Kasia. Families know their babies are in good hands and are adapting quite well to this unusual time.
Allow yourself to grieve and forgive
Carolyn described her time in contact isolation as challenging, especially in the first few weeks. She had to learn to juggle the needs of both her twin boys in isolation and figure out a routine. There can be some very big emotions, including a sense of loss of one’s expectations of what could have been, a new level of stress, confusion and fatigue. With time these feelings will likely subside once a routine is established.
At this time we are all learning a new routine – families may be working from home and having to balance the day-to-day needs of their children – so it is important to be forgiving of others and even ourselves, as we figure it all out. And don’t forget, older children in the home are also experiencing many emotions, loss of seeing their friends at school every day, and they will need some allowances and forgiveness during this challenging time too.
Pam says that it is okay to acknowledge feelings of anger or frustration during such an unusual time. We must process our emotions and make sense of everything that has been happening in the NICU, as well as once at home in a new kind of isolation.
Mental Wellness and Self-Care
It is okay to be stressed out and uneasy during this time. No one knows what the next day is going to bring. Kasia points out there is a quick checklist to gage one’s mental health. She says, if you’re feeling sad or irritable most of the time, can’t take pleasure in what you used to, experience constant worry and racing thoughts that cannot be controlled, you may be above and beyond an appropriate response to a challenging time. Other symptoms that there is more going on are increased pain or discomfort in stomach, head, chest, behavioural signs including sleeping too much or too little, you can’t get through your daily activities or you can’t stop moving or you’re more fidgety than normal. These are symptoms that point to forms of depression or anxiety.
If parents identify some of these symptoms, what is the current process?
Kasia suggests self-care strategies that can be found online, mindfulness apps that can be downloaded (many are free, such as Calm, Headspace and The Mindfulness App). If you are thinking, I need help above and beyond this, you can self-refer to Toronto Public Health (Health Babies, Healthy Children), where they are currently offering virtual appointments. You can also self-refer to local service providers. If you have a connection with a social worker from being in the NICU previously, reach out to that social worker for assistance. They will likely know the resources in your community best. Physicians can also make these referrals.
Fabiana, asked how the fathers are coping with their babies in the NICU and current pandemic 1-parent visiting policy in place. Kasia says fathers are having a harder time due to these new restrictions. Kasia indicates they do have a father’s mental health program in their unit, and this type of support does vary from hospital to hospital across Canada. The implementation of additional e-rounds and e-visits are helping parents, especially fathers, with feeling connected and present to support their babies’.
Pam explained the hospital in which she provides peer support continues to provide one-to-one peer mentorship, which is currently taking place virtually or by phone.
When it comes to self-care while in isolation –in a NICU or at home – there are several things parents can do to take care of themselves. Carolyn, Pam and Fabiana describe things like reading aloud to their babies, personalizing their baby’s space to make it their own, connecting with family and friends even if through social media, scrapbooking, journaling and remembering to take the time to do other enjoyable activities.
While isolated at home make sure you take uninterrupted time to yourself – have a shower, take a nap, take a walk and reach out to your support network.
And finally, don’t forget to see the gift in having the unexpected opportunity to spend more time at home, close to the ones you love, during this uncertain time. Being home with your baby and older children is something to celebrate!
Be sure to connect with Canadian Premature Babies Foundation every Monday and Friday at 1:00 PM EDT for Facebook Live chats with experts and on Wednesdays at 1:00 PM EDT for our Online NICU Parent Group Chats.