Why I Engage

Have you ever experienced a time when you were so afraid you thought your heart might explode, causing you to collapse into a useless heap of flesh and bones? 

That was me 16 years ago. My doctor said I was pregnant with a healthy baby girl, but after 20 hrs of gruelling labour & delivery, she was whisked away to a strange and unearthly place called the neonatal intensive care unit (or as 'insiders' call it, the NICU). 

The NICU is simultaneously the best & the worst place I have ever encountered:

• My baby needed urgent life-saving surgery, but the hospital couldn't find a doctor to do the procedure (it was Thanksgiving).

• The surgery happened and the health team was annoyed because I didn't meet the surgeons. (They also forgot to mention when the surgery was & the existence of the surgery wait room) 

• I shuttled back & forth between the adult hospital (where the breast pumps lived) and SickKids for 4 days before I discovered: there are breast pumps at SickKids!

• After 2 days I discovered: there's food at SickKids! And Starbucks! And the people in the line were really nice and insisted I go ahead of them. (Later, I realized this was because I was leaking breast milk through my light blue shirt, prominently displaying dark splotches across my chest).

• I slept on the floor of the NICU 'lobby' so I could attend 17 health consults in 9 days. I was a vision of loveliness: unwashed, outfitted with snazzy postpartum diapers and breast pads, and in a trance from pumping milk every 3hrs at night.

• On day 9, I received 'training' on my baby's life-sustaining health technology. We were given the boot on day 10.

My baby survived the NICU, but I was left feeling angry and confused. Could I dare complain about a place with superstar nurses working 24/7 to keep my child alive after doctors had saved her life?

I didn't say anything, but captured my thoughts in a secret document called "Why the NICU Sucks So Bad."  

Years later, I encountered a man named Dr. Jonathan Hellmann who happened to be the Director of the SickKids NICU at the time. I shared stories from my document and he went to bat, paving the way for meaningful change. 

Today, the NICU experience at SickKids is very different:

• There's a parent liaison whose actual job is facilitating communication between parents & staff. 

• They use the Family Integrated Care Model to support learning and care.

• Parents can access showers, sleeper chairs and snacks in the Ronald McDonald Family Room.

I'm certain Dr. Hellman would have championed improvements even if we hadn't met, but perhaps my stories provided a deeper understanding of why the work should always involve families.

They say 'it takes a village to raise a child', but when the smallest, sickest & most fragile babies are born, you need healthcare practitioners, administrators and researchers to partner with families to give these tiny humans the best possible chance to live a meaningful life.