The new Canadian program that empowers preemie parents

What one family learned thanks to a ground-breaking shift in premature baby care

After I gave birth 12 weeks early to my daughter, “Tenacious” Tess, the first thing I wanted to do was hold all 1,060 grams (2lbs 5 oz) of her to my chest and never let her go. My maternal instinct was to protect her, to rock her back and forth and to whisper softly in her ear she was safe now in Mummy’s arms.

Instead, a team of neonatal specialists swooped in and took Tess off to the resuscitation room to save her life. Before I even got a chance to touch her paper-thin skin, she was gone and I felt helpless. In that moment all I could do was trust the trained medical team. They had the experience and expertise to save her. I did not. She was in their hands, literally.

What was involved

A week into our 82-day neonatal intensive care unit (NICU) stay at Mount Sinai Hospital in Toronto, my husband, Andy, and I were approached about a new pilot project called The Family Integrated Care Program. Parents who participate commit to spending eight hours a day at the hospital (we were there at least 12 hours at that point anyway), receive coaching from an inter-professional multi-disciplinary team on basic care — such as feeding, bathing, changing diapers — take the lead in care planning, chart baby’s progress and present at rounds each morning to physicians and other clinical staff. They must also provide as as much skin-to-skin contact as possible. With that last one, we were sold and the icing on the cake was the promise of free hospital parking, which my pragmatic husband loved. Guys live for free parking. And so, we became the first family in North America to sign up for this ground-breaking program.

What we learned

Over the next 10 weeks Andy and I got what seemed to be our “master’s of preemie education.” We went from shell-shocked voyeurs staring at our wee baby with the envelope-sized diaper in an isolette, to competent participants in Tess’s everyday care. No one knew more about our daughter’s case than us; her likes and dislikes, behaviour and any and all differences in her health. We were the “constants” at her bedside and were able to recognize subtle things like changes in her skin tone indicating dips in her haemoglobin.

We became an integral part of the medical team that saved Tess’s life. At the same time, we were now “normal” parents who did regular things, like changing her poopy diapers, reading books and giving her nightime baths.

Why it works

There are a number of reasons this is a good thing. “The benefits are empowerment and better involvement of parents so they are more confident and understand better the care and condition of their babies,” says Mount Sinai paediatrician-in-chief Shoo Lee. Because of this,“care is more consistent and there is a better developmental care and bonding, which should lead to reduced infections, better growth and reduced length in hospital stay,” explains Lee.

When I look back on our time in the NICU I can’t imagine doing it any other way and want to scream from the rooftops how important this shift in care really is for parents and their premature babies. And more families may also be able to benefit from it too. “We are hoping to start a pilot at Sunnybrook Hospital soon and then to conduct a multicentre study in many Canadian NICUs,” says Lee. “Parents at other hospitals can work with their NICU admin to begin organizing similar programs. If the multicentre study is successful, this will become a standard of care option in Canada.”

How it’s helped us

Tess has been out of hospital for just over three months now. I’m not sure we would be in such a good place after those intense 82 days in the NICU, had it not been for The Family Integrated Care Program. I am thankful we signed up, not only for the free parking but because we are different parents now. We are calmer, more confident and continue to want to be educated in all things “premature.” We are not afraid to ask questions, to speak up and to advocate for our daughter in a way we were not capable of before.

And late at night when I’m quietly nursing Tess and there are no beeping monitors, machines or wires attached, I can rock my baby girl back and forth and whisper softly in her ear that she is safe now in Mummy’s arms.

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