Thanks to an NICU family request, the Fund has reconnected with SickKids NICU. Sasha went to NICU from Mount Sinai Hospital on the night she was born however we only spent a few days there as her cardiologist quickly established her issue and allowed us home (as we wanted) with a very blue baby saturating in the low and mid 60s.
After bumping into and meeting the family for the first time (Jonathan, Janis and Diane) in the hallways of SickKids after a CCCU education session on Monday, I called up Dr Jonathan Hellman, Clinical Director of SickKids NICU. The following afternoon he called me back and we had a much appreciated discussion about NICU plans. We ended with Dr Hellman sounding excited to engage us in a family-centred brainstorming session with his team and the fund and parents. NICU will get back to us on a time.
I had read the ambitious 2005 strategic directions sketching out a triple play evolution in NICU: a new individualized developmental program, equipment that would allow continuous monitoring over 24-48 hours rather than depending on snapshots and a rearchitecting of the NICU to allow night and day, private individual rooms for baby and mom, stimulation in the form of sound and color. They wish to bring on two new staff fulltime, to merge social science and neuro science.
This program of advanced individual development has not been fully embraced, he admits, and is partly based on work by maverick Heidi Als on infant brain development. It is hard to scan if development programs make a structural difference. So they are looking to confirm that such a program can produce the traditional measures of expanded neural cortex, parent satisfaction and involvement, breastfeeding and bonding.
Dr Hellman is an advocate for the nurture side of the nature-nurture equation. As he sees it, intuitively there is no question that a mother who spends more time with the baby and gets more info will be a fantastic mother. "Intuitively we know its better that the mom is with her child, feeding, rather than when we call the mother in three times a week with no breast milk."
"I am not a complete contrarian but I dont buy that genetics loads the gun and that is the end of the story. Genetics doesnt do the rest. You know what, we have learned, after much study, ok, so breast feeding is good!"
He noted 'Implementation Science' requires us to look carefully as to how data is constructed from what is implimented at bedside. One size doesnt fit all and we have to look closely at physical and cultural and financial contexts. He referred to something so easy to know it would be like his Bobba telling him: you know if people dislike something they will try and stop it. So its not just about science and new genetic breakthroughs but how changing practise makes its way to the bedside and is then measured.
He shared a wonderful program setup by Linda Lo Re called PJs for Preemies, small sets of fleecy pajamas for tiny preemie babies.
In preparing for our CCCU presentations I was talking to CCCU nurse educator Karen Dryden-Palmer and she made it all fit into place when she described NICU as "the birthplace of family-centred care".
We look forward to learning more.
Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.
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