Perinatal
Parent
Advisory
What a Great Year!
A message from Kristy Macdonell
I hope that the New Year finds you all well and in
good health. This newsletter will highlight some
of the fantastic work that the Parent Advisory
Committee has been working during 2010.
The Effective Communication parent lead in
services are now integrated into our NICU
program on a consistent basis. This is a positive
achievement and serves as a testament to how
much staff appreciate and value parent
perspective. Many of us look to parent feedback
to help guide our professional practice to ensure
that every family feels that they have received
excellent care.
In November 2010, we held our bi-yearly Dialogue
with Administration, which was attended by our
NICU Administration as well as many of the NUA’s
from the Maternal and Infant Program.
"Are we being heard? Yes we are! We experienced this
first hand at the parent/administration meeting held
this past November. Both Raffi and I were pleasantly
shocked at the number in attendance from the 7th
floor administration. They were keen to hear about
our experiences and ideas. They were receptive to
hear about how fathers are viewed and heard in the
NICU, which was just one of many other topics
discussed that night!"
Stephanie Demerjian "Are we
being
heard?
Yes we
Bi-annual Dialogue with Administration, November 2010
are!”
INSIDE...
NICU Graduates
raising money for
the NICU
A note from a newly
trained Parent Buddy
page 3
page 3
Learn about the
new TLC Pilot
Project in the
NICU
page 4
Becoming a Family
Today my daughter Morrigan is a strong, happy, healthy, active and verbal little
person, but that wasn't always the case. Her entry into the world and the time
that followed was easily the hardest, most terrifying, and overwhelming time of
my life. You see, my daughter was born 12 weeks early. To start with, I had practically every pregnancy complication in the book. This
led to increased monitoring and, at 26 weeks into my first pregnancy, an
ultrasound showed that my cervix was a bit short. The next day, December 12,
2009, I lost my mucous plug. Due to my history, I was asked to come to triage
Decemb
for an NST and fetalfibronectin test. Everything looked good, so we were sent
er 2009
home. Unfortunately, the test results came back positive (i.e. not good) and I was called back early
Sunday morning for admission as a premature labour risk. I thought that I'd be sent home the next day, but after two days of
steroid shots, the doctors thought that I should stay for observation. I had high hopes that I'd be home for Christmas, but on December 21st an ultrasound showed that my cervix had disappeared and
I was told I'd be on 7South until I delivered. There were a number of women who'd been on the floor for weeks with no cervix, so,
though it would mean a long stay in hospital, I hoped that I could last until close to term. Despite the bedrest, however, I went into
labour and our daughter Morrigan arrived on December 28th, at just over 28 weeks gestation, weighing 2.5 pounds. She was tiny
and fragile, but was the most beautiful thing I'd ever seen. Until I was on bedrest with time to do research, I had no idea that one in eight babies is born prematurely and I didn't know
that significantly preterm babies could even survive. We'd dealt with infertility, we had been "prepared" to face loss, but no one had
ever suggested to us that prematurity was a risk. To say we were unprepared is one of the biggest understatements of all time.
Thankfully, we were really lucky and Morrigan had a pretty easy run. She was born "flat" and not breathing, but was only on the
ventilator for a day before being switched to CPAP. Head ultrasounds showed only a tiny Grade I bleed and an Echo scan showed
no PDA. She spent lots of time under bili-lights, but her biggest problems were food intolerance and apnea/bradycardia. In
summary, her biggest challenge was being really small. With time, that improved and she grew before our eyes. There was really only
one day when she had the doctors worried, but all cultures and tests came back negative. In total, Morrigan stayed in the NICU at
Mount Sinai and eventually St. Mike's for almost three months and came home on her due date of March 20, 2010. Being the parent of a NICU preemie is terrifically hard. Even when your baby has an easy course, the stress, trauma, and disjunction
with expectations is huge. We felt alienated from our tiny baby, totally helpless, and like no one understood. Pumping made me feel
like part of the team, but kept me up around the clock. The knowledge gap between us and care providers seemed insurmountable,
but staying at her isolette as much as possible and asking questions was really helped, as was attending Tuesday NICU Education
meetings and lactation lunches. Having a Parent Buddy made me feel less alone and huge amounts of skin-to-skin holding made us
feel more like "real" parents, as did participating in as many aspect of her care as we could. In fact, I spent the New Years
Eve count down changing the first diaper of my life! The Mount Sinai NICU team is pretty amazing and made our experience so much better and
easier than it could have been. I'm hugely grateful to the
doctors, nurses, respiratory therapists, social workers,
lactation consultants, dietitians, volunteer parent
December 2010
"Buddies" and those I don't even know about. As a
“In summary,
result, I felt the urge to give back. So far, I've
joined the NICU parents association, trained to be
her biggest
a parent buddy, and am driven to do more.
challenge was
To close, let me say that Morrigan's arrival
and stay in hospital was the scariest time
being really
of my life, but every second of it was
worth it, as she's absolutely perfect. I know
small.”
it's been said many, many times, but thank you
Mount Sinai for saving my tiny baby and letting us
become a family.
page 2
A reflection on Parent Buddy Training
I would like to introduce myself as Ani Rapallo, mother of 3 children;
Francesco, Julian and Shant. Julian and Shant were born at Mount Sinai
on July 31 2009 at 24-weeks gestational age. That day a whole new
page was opened in the story of our family. A new journey of fear,
hope and love began as we entered the doors of Mont Sinai Hospital.
During our 3-month stay at the hospital, we learned to be brave,
hopeful and strong people. The wonderful staff - the nurses, the
doctors and the social workers - helped us overcome our worst fears
and sad moments. They also had tears of happiness with us during our
victorious and successful achievements. That is why we wanted to
participate to the Parent Buddy Training. It was time to give back what we call the
‘Love, Hope and Devotion’ that we learned at Mount Sinai during the recovery of our twins.
The training was excellent, very well prepared and very helpful. Marianne and Kristy did a wonderful
job organizing the training and teaching us all the important do's and don't's in becoming a parent
buddy. I am looking forward to becoming a parent buddy to share, listen and hope for all of our
parents who are at NICU with their babies. Thank you so much for everything and for giving us the
opportunity to give back the least that we can.
Ani
We are on
FACEBOOK!
Join Mount Sinai
NICU Parents page
A veteran NICU parent
will be posting NICU
news about related events
(ie. picnic, educational
sessions)
The beads of hope • Les perles de l’espoir
Hello, my name is Madison Vande Sompel; I was born on May 31, 1999 at
Mount Sinai Hospital in the NICU at 32 weeks along with my twin brother
Ethan. We were released from the hospital 6 weeks later. I am now 11 years
old and in Grade 6. I have recently learned about Craig Kielburger and
Hannah Taylor in school, they have inspired me to do something I had never
thought I would be able to do before.
I make and sell jewelry and then donate half the proceeds to the
NICU at Mount Sinai and the other half I donate to
Dr. Sproule’s Foundation “Canadian Reconstructive Surgery
Foundation”, my former surgeon. I called my very good friend
Alexandra Steele to see if she would like to help me, and she
agreed. Alexandra was not a preemie nor was she born at
Mount Sinai Hospital. We had decided to name our charity
“The Beads of Hope”. Alex, Ethan and I have been making
and selling our Jewelry since Christmas Vacation, 2010, we
have collected $300. We have a new goal; we would like to
donate $1,000 by Grade 9.
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7th flo
TLC Pilot Project Update
The TLC - teaching, learning, caring project launched in late February 2011! Mount Sinai Hospital
has both funding and a dedicated team devoted to
this interesting concept.
We will work with approximately 40 interested
parents who will provide extra care to their baby,
with the expert teaching of nurses and the support
of the medical team and resources - including
veteran parent mentors.
When their baby/ies is stable, ‘TLC parents’ stay at
the hospital for 8 hours daily to participate in
rounds, provide baby care - including lots of holding,
and daily education sessions, assisted by staff only
when necessary.
A special thank you to
the families who
donated gifts for the
NICU babies stockings.
So far, feedback from
TLC parents, veteran parent
mentors and trained
TLC nurses has been
positive!
NICU
Graduate Picnic
Sunday June 12th, 2011
12 noon to 3 p.m
High Park , Toronto
Picnic areas 2 and 3
For further information, please call:
Kristy Macdonell
NICU Social Worker and Coordinator of Parent Programs
416-586-4800 Ext. 5213 or [email protected]
Marianne Bracht
Parent Resource Nurse
416-586-4800 Ext. 5338 or [email protected]
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