'I don't want any parent to feel alone'

Kate Robson is parent co-ordinator for the Newborn Intensive-Care Unit at Sunnybrook Health Sciences Centre. The new 41-bed unit – which opened last year – cares for babies born before 28 weeks as well as newborns with other medical issues. Kate’s ties to Sunnybrook go back six years when her daughter Maggie was born at 25 weeks (photo above) and was an inpatient for over five months. Her position in the unit as a parent supporting families is a new one. Thank you to Frank Gavin, former chair of the Canadian Family Advisory Network, for letting me know about Kate! Louise

'I don't want any parent to feel alone'

BLOOM: Describe your role.

Kate Robson: My main priority is to work with families and be there for them as a support – and what that looks like depends on the family and what they need. For some families I’m someone they can talk to and bounce ideas off. I help other families navigate the system and connect them to resources in our hospital and elsewhere. I do a lot of visiting, walking the floor and have regular events to connect the parents. Every Thursday is a standing invitation at 1:30 and I bring treats and it may be social or we may bring in a speaker. We try to give people an opportunity to celebrate because there are lots of reasons to celebrate. Because our families have single room units, it’s even more important that I connect them so they don’t become isolated.

BLOOM: What are the greatest challenges for parents?

Kate Robson: Uncertainty. Before my daughter was born, I assumed there were more black and white answers when it came to diagnosis and predicting the future. Learning to live with the gray areas is difficult for every family. For many, everything was going lovely with their pregnancy and then they suddenly descended into this medical abyss. So it’s very surreal. There are feelings of isolation – that your experience is different from what you expected and from what everyone else around you is going through. For families who are here a long time, it’s hard to manage on a practical level – being away from home, and with all of our rules and regulations in terms of infection control. This experience changes you. It changes the way you look at the world and your perceptions of control and safety.

BLOOM: What was your experience of having a baby who needed to be in the NICU?

Kate Robson: Maggie was born at 25 weeks at 500 grams – the same weight as a block of butter. Everything was fine and then my blood pressure skyrocketed and they realized that a problem with the placenta was preventing Maggie from growing. I had a c-section and she had a very rocky first three weeks of life: there were many suspected problems and she had to have a surgical procedure on her heart. All the drama of ‘is she going to make it?’ was front-loaded in the first month.

BLOOM: I sat in an NICU waiting room once and listened to parents talk about how they were being pressured to withdraw care from their baby because the probability of disabilities like cerebral palsy was high. One mom said: “I know my son may have CP, but he’s my son!” I wondered how much personal experience with disability the NICU physicians had. Was withdrawing care ever suggested as an option for Maggie?

Kate Robson: No. I think the idea of informed decision-making is a lot more complicated than we thought. Once a parent has asserted his or her decision, then we need to create a judgment-free zone and our job is not to question the value of the child’s existence or the value of the parent’s decision. We need to put that child on the path to the best life possible. Because people who work in the NICU are used to trauma, it can limit our world view. We’ve seen the worst of the worst and it may colour our perceptions. We need to support people to make their own choices. That’s where I love families coming back to us and sharing their experience and ideas on how we can improve.

BLOOM: Tell us a bit more about your stay in the NICU.

Kate Robson: The first two months were focused on survival and stability. They were great about helping us hold Maggie and do ‘kangaroo care.’ This is holding your baby skin to skin against your heart. It’s the closest you can get to having them back in the womb. Your body will regulate their temperature and there are all kinds of benefits in terms of growth and brain development. Each room has a kangaroo care chair – which is easy to get in and out of and makes it comfortable to hold your baby, especially with a ventilator – for hours at a time. You start with your baby in an incubator with lots of stuff - ventilators and things to hold IVs - and as they grow the stuff goes away and the machines get smaller. It becomes easier for parents to play a role (although our involvement is encouraged from the start). The baby moves from being tube-fed to being breast- or bottle-fed.

BLOOM: Does Maggie have any disabilities?

Kate Robson: No, she doesn’t. She’s going into Grade 1 and seems to be doing fine. Babies who are very small for gestational age tend to be a bit smaller and what’s difficult now is watching her deal with comments and questions about her size. She’s had some experiences with bullying. As a parent, I still find it very anxiety-producing to go into a new clinical space and have her assessed. I’m always waiting for everything to go wrong.

BLOOM: Do you think it’s hard for parents in the NICU whose children have been diagnosed with disabilities to share with you, knowing your child doesn’t have long-term issues?

Kate Robson: We’re very fortunate and in many ways Maggie has been an easy kid. That’s not what always happens. But I don’t think other parents would trade their kid for mine. Sometimes I have a bit of almost survivor’s guilt, thinking ‘Am I the person they want to talk to?’ But I’m only one person. I have one story and I can’t be the answer for everyone. We have a lot of very gifted parents we can connect people with through our follow-up clinic. It’s so important to connect parents.

BLOOM: What do you hope to achieve through your role?
Kate Robson: My main goal is that I don’t want any parent to feel alone – whether in those early days or 10 years down the road.

BLOOM: In what ways could Sunnybrook’s NICU improve?

Kate Robson: I think in peer mentorship, in early education with families, and in really strengthening the relationship between caregivers and families, although I think we have a strong base there. I’m one parent voice, but I’d like to bring more and more families in and engage them and ensure there are diverse parent voices.

BLOOM: When you hear from graduate families, what do they want you to focus on?

Kate Robson: They want the experience of care to be the same, even if they can’t always have the same caregivers. They don’t want people telling them different things all the time. I think we have to find creative ways to help families feel like they have choices. They’re in a situation where a lot of choice has been taken away and we can’t fix that. So when it’s possible to make choices, we have to give them the opportunity and honour those choices. I think we also have to do more to support families who are transitioning home. That’s how I felt and that’s the feedback we get from families. I think peer support could be a cost-effective way to help and a lot of times the best help comes from people who’ve been where you’ve been.