CleftPALS WA Newsletter Nov 17

CleftNEWS - November 2017

INSIDE THIS ISSUE Find this edition's My Story -
Operation Smile in India on p. 12
From the Editor...................2
President's Message...........2
Morning Teas...................5-7
Upcoming Events................6
Equipment and Supplies.....8
Pre-loved Stock...................8
Arm Splints..........................8
Clarence Bears....................8
Memberships.......................9
Committee Members...........9
Perth Children's Hospital.....9
Fundraising..........................9
My Story..............................10
Thank You...........................12

FROM THE EDITOR PRESIDENT'S MESSAGE

Welcome to the November By Neeva Stephen
newsletter, a new look version
of the newsletter for CleftPALS To say the past few months have been a bit of a
WA. We are working towards roller-coaster ride would be like saying the
refreshing and standardising our distance between earth and the sun is merely a
appearance across all of our hop, skip and a jump. Seriously, the number of
communication avenues. highs have been very well matched by the
number of lows and most days I don't know if I'm
In the next edition we are coming or going. What has been happening
planning to introduce a new personally has been pretty much all consuming,
item, a Research Update. The so CleftPALS WA has moved from being the
idea is to share a piece of volunteering I like to do to something far more
research relating to clefts that pivotal – that is, my respite and 'constant' in a set
we hope will be relevant and of circumstances that are very uncertain. I am not
interesting for you. I'm looking the kind that likes being mysterious or convoluted,
forward to reading through so I won't leave you all wondering what on earth
some relevant journals in is going on. I did mention some of this in the last
preparation and I hope you will newsletter, but bottom line is the roof over my
let me know how this new head and that of my sons is currently in jeopardy,
offering is received! due to a separation (in June of last year) and a
property market that is pretty dire. As a result, I
Not only is it an action packed am currently in the process of raising $'s, to
time in terms of our Cleft PALS reduce the loan on our home to an amount that is
activities, we know it is a hectic serviceable AND the bank will allow us to
time on many fronts for all of refinance. If you want any further info about what
you.Take care of yourselves is going on and/or would like to help us out,
and we'll be back with our next please send me an email or give me a call,
newsletter in February 2018. because as you all know "the sharing helps".

Manjusha Thorpe Right, now I have that out of the way, let's talk
[email protected] about CleftPALS WA. I am a bit embarrassed to
admit that I don't actually have a lot to say about
what we have been up to, because I have been
rather preoccupied with the aforementioned
situation and also with Jake having his
orthognathic surgery in September. I will get to
Jake's surgery in a sec, but for now I really just
want to thank all of the Committee for their
compassion and understanding the past few
months in particular, as I really haven't been
much of a leader. Fortunately, the Committee is
full of very independent, capable and skillful

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individuals, so our 'work' has been ticking along nicely.

As I write, we are in the middle of National Cleft Awareness Week, which started many
years ago when a few of the states were part of an umbrella group, CleftPALS Australia.
Myself plus one person from CleftPALS Victoria and another from CleftPALS NSW
attempted to keep CleftPALS Australia afloat for years, but it just hasn't happened
unfortunately. Regardless, CleftPALS WA have continued to consider this week - 8th to
14th November – as a time to really focus on our group and it's members and always
holds at least one event to celebrate. I wasn't able to make the morning tea on
Wednesday 8th at Mueller Park, but I hope those of you who did get there enjoyed
yourselves. Thanks go to Carmen for organising and hosting the event. We also have
our end of year picnic happening on 26th November at Kings Park, so I hope to catch up
with familiar and new faces then. If you haven't already RSVP'd, please do so ASAP, so
Santa knows you're coming!!

Now onto Jake's surgery... I will start by telling you all that I am in complete awe of my
son and how he has conducted himself the past 8 weeks. In contrast, I have been an
absolute basket case. The day of his surgery was SO INTENSE. We think this was his
13th surgery, including 8 sets of grommets and also 1 not cleft related op, but it astounds
me how the feelings of fear of the unknown come flooding back. As his Mum, I tried to
remain as calm as possible and not fuss over him, however my insides were tied in knots,
my heart was going through bursts of racing so fast I thought I was going to pass out and
all I really wanted to do was tell him how much I loved him and that everything would be
OK (even though I wasn't too sure it would be). Seeing him for the first time after surgery
was a mix of elation, relief and still that little bit of fear for what laid ahead the next few
weeks. Of course, I burst into tears. I do that. A lot. The next few hours are a bit of a
blur to be honest. I know the nursing staff attempted to get Jake comfortable, while I took
a stack of pics. I do that. A lot. I don't recall much else.

What is very clear, though, is the drive home later that night. The second I started the car
I also started crying – oh, crap, I'm tearing up now just thinking about it – and I didn't stop
until well after I arrived home. It's a half hour trip, but took me nearly an hour, as I was
crying so much I had to stop twice. I think 20 years of held back tears were purged that
night. 20 years of (roughly) weekly visits to PMH for one or both of my sons, for cleft and
numerous other clinic appointments, had finally reached the pinnacle of THIS surgery.
This long, difficult yet amazing chapter was drawing to a close and I think the enormity of
everything both of my sons have been through came to the surface all at once that night.
And boy did I need it!!

I actually slept very well, after taking quite awhile to settle and despite Jake being on his
own in hospital for the first time in his life, as I knew he was safe. Josh was staying with
a Host Family for that night and the next, so I also knew he was safe. Jake came home

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on the Friday, less than 48 hours post surgery. I won't lie, the next 10 days were pretty
stressful, with trying to make sure Jake was eating enough, cleaning out his mouth,
without disrupting the sutures, and ensuring his pain was under control. He slept a lot
that first week, then just kept gradually improving. The swelling went down much quicker
than I expected, his pain remained well controlled, he slowly ate more and more and also
started moving around a bit more around the 2 week mark. The whole time Jake was
just my usual compliant, calm, 'take it in his stride' son. I couldn't possibly have been any
prouder of him.
Jake returned to work, as an apprentice automotive technician (mechanic), 4 weeks and
5 days post surgery. He was pretty tired for the first couple of weeks, but this past
couple of weeks have been much better. Being able to eat steak again helps!! Haha. He
still has his braces on, with appointments roughly every 4 – 6 weeks for the next 6 – 9
months AND THEN he will be DONE. Hopefully...
Lastly, I just want to share one piece of advice to anyone who has a little one who is
likely to need this surgery. Please don't worry about this surgery until you need to. That
is, until they are nearly fully grown. The techniques/procedures used on Jake were SO
DIFFERENT to what they did when he was a toddler, I find it hard to believe they were to
reach the same outcome. By the time YOUR toddler has this op, things will also be done
very differently – and much better, no doubt – so don't waste your energy on what is
going to happen. Just focus on where you are at now, enjoy your little one and make the
most of being a parent. Trust me, before you know it, they will be 8 weeks post
orthognathic surgery and their cleft repair chapter will hopefully be drawing to a close too.
No doubt, I will still be involved with CleftPALS WA, so let's talk then.

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AUGUST MORNING TEA

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UPCOMING EVENTS

End of Year Picnic
Sunday 26th November: 10am - 2pm - Kings Park, River Gum

Gazebo in the Lotterywest Family Area
Morning Teas

January 15th - Singleton
February 15th - Bayswater
Please RSVP to [email protected]

SEPTEMBER MORNING TEA

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NATIONAL CLEFT AWARENESS WEEK (NCAW)
NOVEMBER MORNING TEA

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EQUIPMENT AND SUPPLIES

Special equipment for cleft bubs can be obtained by contacting a
Committee member or emailing [email protected]. With
the launch of our new website you will be able to purchase items
online (stay tuned!).

Please ensure you order your splints and bottles prior to surgery
so you are well equipped once you leave hospital.

PRODUCTS MEMBERS NON-MEMBERS
Large Pigeon bottle & spoon $7.50 ea $10.00 ea
Boon Spoon $10.00 ea $12.00 ea
MAM bottle $10.00 ea $12.00 ea
Special needs feeder $50.00 ea $55.00 ea
SNF teat $18.00 ea $20.00 ea
Regular teat (pack of 2) $6.00 pack $7.00 pack
Symphony pump (hire) $10.00/wk + $80.00 bond (Members only)
Milk collection kit $30.00 $35.00
Post-operative arm splints $18.00 pair $25.00 pair

PRE-LOVED STOCK ARM SPLINTS

The wonderful CleftPALS WA arm

We would love for you to donate any 'pre- splints that you can purchase are
loved' equipment or bottles you no longer made by volunteers at our sewing
need to assist those in need or to replace
Busy Bees.

lost parts. If you can assist by cutting, sewing,

Unfortunately the Cleft Unit at PMH does providing a machine or even making
not have the storage space to hold these coffees please contact
donations so please contact a CleftPALS
[email protected] to find
WA Committee member to arrange out the details of our next Busy Bee.

collection.

CLARENCE

BEARS

Please contact our president on
[email protected] if you

can assist with making our bears.

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MEMBERSHIPS 2017/2018 COMMITTEE

Please stay tuned for our new
website, which will make

becoming a member or renewing
your membership even easier.
Meanwhile, for any questions
please email memberships@
cleftpalswa.org.au

ROLE NAME CONTACT

President/Education/National Rep/Contact Parent Neeva Stephen 0416 232 156
VICE President Margaret Stronge-Smith 0415 861 933
Website Coordinator/Contact Parent Ivette Herzog 0406 805 574
Treasurer/Memberships Katie Freeman 0435 390 633
Secretary Cate Rayner 0409 402 509
Equipment Coordinator Carolyn Reduch 0423 744 336
Newsletter Editor Manjusha Thorpe 0400 798 230
Fundraising/General Committee/Contact Parent Kelly Pascoe 0416 216 350
Birthday Cards/Contact Parent Coordinator (SoR) Deb Zwickl 0417 522 723
Parent Kits/Contact Parent Coordinator (NoR) Carmen Bowles 0419 563 323
General Committee/Contact Parent Belinda Thomasz 0409 372 947
General Committee/Contact Parent Sharon Firth 0414 212 888
General Committee/Contact Parent Thea Matthews 0407 746 473
General Committee/Contact Parent Danielle Payne 0409 110 564

PERTH CHILDREN'S HOSPITAL FUNDRAISING

The water quality issues, which were caused by brass Please be reminded that
fittings within the Thermostatic Mixing Valve (TMV) units whilst we do appreciate
are being overcome through a testing regime. The any fundraising you wish
regime is trialling TMV units made from other materials, to do on behalf of
including stainless steel, dezincificatioon-resistant brass CleftPALS WA, it does
and nickel plated brass. Once the optimum material has need prior approval from
been identified, the water system will be corrected in the Committee. Please
priority clinical areas to speed up the opening of the contact one of the
hospital. Meanwhile, Department of Fire and Emergency Committee members
Services (DFES) district officers, volunteers and nurses above.
have received a site orientation. This has allowed 30
DFES staff to understand the operation of the hospital's We welcome your ideas
fire systems, fire control centre and helipad. At the same for future fundraising
time, staff are continuing to fine-tune their knowledge of activities.
wards and departments at PCH via workflow tests.

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MY STORY

Operation Smile was founded in 1982. Today a team of medical volunteers, donors and
staff, working together with government agencies, local health systems, non-profit
organizations and like-minded partners treat children with cleft conditions around the
world. Operation Smile’s Global Standards of Care means every patient cared for by
Operation Smile will benefit from the same sophisticated equipment, procedures and
highly trained, credentialed medical professionals, no matter where they receive treatment
(Operation Smile, 2017).

Operation Smile Australia Limited was founded in 1999 by Dr Lewandowski. Dr
Lewandowski volunteered on medical missions to China, Colombia, Gaza, Kenya,
Philippines and Russia. He was also involved in the medical educational training sessions,
and in the training of Operation Smile International Fellows (Operations Smile Australia,
2015).

I have had the privilege to volunteer with Operation Smile on 3 missions in developing
countries so far: in Davao - Philippines, Ningde – Fujian Province of China and Haldia –
West Bengal, India.

My most recent trip was to India where I was one of around 60 volunteers from 14 different
countries! Over a two-week medical mission we form as a team, hold a screening day, set
up the theatre/hospital and then provide a week of surgery and post op care. On this
mission we screened a total of 230 patients and provided 156 individual successful
surgeries to eligible patients! 134 of these patients were seen for their one-week follow up!

We arrived to average temperatures of 38⁰C in settings without air conditioning and
families (who have travelled for days to get to the hospital) all together on the floor on the
top level of the hospital waiting for screening day. The wards were hot, busy and crowded
and blackouts were not uncommon! Far different from the clinical settings we are used to
at home in Australia! The day & night nurses worked tirelessly in these conditions for a
week of 12hr + shifts.

I work as a Paediatric Intensive Care Nurse. In the surgical week I am in Post Anaesthetic
Care receiving patients in recovery as they are wheeled out of theatre and stay with them

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as they awake ensuring they are safe and comfortable and then are taken up to the ward.
Perhaps my favourite part of this role is bringing the parent/guardian into the recovery
room where I am with them as they see their child for the first time post-surgery. We don’t
always speak the same language but the smile and their eyes give away exactly how
they are feeling. The bigger kids and adults are given a small mirror once they are awake
and they shyly peer into the reflection seeing the change to their faces. Local nurses and
interpreters help me communicate further with the patient and their families.
Operation smile provides free surgeries for children born with cleft palate and lip. Without
this initiative many children have such difficulty eating and drinking it can be life
threatening. A child may be teased or bullied and devastatingly - a child born with a cleft
may be abandoned by family members or entire communities.

All children deserve to be treated as if they are our own and every child suffering
from cleft lip or cleft palate deserves exceptional surgical care.

Operation Smile Australia through the World Care Program and the generosity of
sponsors can arrange to have a child with more complicated disfigurement and a
guardian brought to Australia to receive surgery, treatment and recovery, typically lasting
a month. These opportunities change the lives of these children and their families forever.

I am honored to have these opportunities, travel to new places, meet incredible
volunteers from all over the world and receive smiles from children, parents and
communities. Their smiles are priceless.

Thank you for letting me share my story, if you are interested in further information or
wish to get involved please visit: http://www.operationsmile.org.au/ or email me on
[email protected].
Melissa Christensen (Operation Smile Volunteer)
Photos credit: Carlos Rueda (Operation Smile)

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CLEFTPALS WA

CleftPALS WA is a voluntary support
group consisting of parents of children

born with a cleft, adults born with a
cleft and professionals who care for
children born with cleft conditions.
Our motto is "The Sharing Helps".
This information is intended as a guide
only - it is not intended as a substitute
for professional advice and no liability

is accepted.

Thank you

CleftPALS WA
C/- Variety WA

PO Box 669
Victoria Park 6979
Email: [email protected]

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