20th Anniversary AGM and Open Day presentation. First presented at Little Hearts Matter's 20th Anniversary Open Day on 22/03/2014.

1. Welcome
to the
20th Anniversary
AGM and Open Day

2. House keeping
• Fire exits
• Creche - Children
• Youth Group
• Programme
• Coffee and a Chat
• Photos
• Signage
• Information Fayre
• Regional Leads
• Sign up for
 Resuscitation
 Workshops
 Tour

3. Time Main Hall
Sessions
Lifestyle Workshop Youth Workshops 5 to 10 year olds
Workshops
0 to 5 year old
Crèche
9.00-10.00 Coffee and Registration Ice Breakers Registration and general play
10.00- 10.30 AGM
Minute’s silence In Memory
Active Listening and Communication
All age groups
Hands on session
Get to Know You
Games
10.30 – 10.40 The History of LHM
Suzie Hutchinson
10 to 13 year olds 13 to 18 + year olds
Confidence building
Drama session
10.40 – 11.10 Mr William Brawn
The History and Future treatment and care of children
born with single ventricle hearts Story telling
BCH Play Team
Exploring teenage life with
half a working heart
Nadine McGaffin
Nicky Pope
11.10 – 11.30 Coffee break Break 11.30 Break 11.20 to 11.30
11.30 – 12.00 Dr Simon McGuirk
MRI
What it means now and in the future
Confidence building
Drama session
Story telling life with half
a working heart
(capturing the voice of
young members)
Story telling
What was being in
hospital like?
BCH Play team
12.00 –
12 45
Balancing your life as a young adult with a
Fontan Circulation
The Fontan Panel
Pick up the Children from the Crèche
12.30 – 13.30 Lunch
Computer, Toy Play
13.30 – 15.00
Youth Council Session
What do Youth members want from the Youth
Service
Programme

4. 13.00 – 14.00 Lunch
10 to 13 year
olds
14 to 18 + year
olds
Adults with
Fontan
Circulation
Lunch
(Parents to collect children from crèche)
14.00 – 15.00 Visit the information Fair
Coffee and a chat
Games Exploring Image
Tea, Cake and a
Chat
Jo Quirk
John
Richardson
Art Class
Hand Made Hearts
15.00 – 16.00 Preparing for the
Fontan operation
Suzie Hutchinson
Supporting
a baby with
half a
working heart
Paddy Walsh
Behaviour
Jennifer
English/
Chantell
Douglas
Exploring
transplantation
Julie Flett
General Play
16.00 – 16.15 Pick Up Children Youth Pad Crèche closes
16.30 Aston Villa Tour
Information Fair
First Aid and Resuscitation – Rayne Sutcliffe Education, Statementing – Isabel Baumber and Louise Hall
Benefits and DLA support – Suzie Hutchinson LHM Awareness – Emma Pelling/Joe Stevens
General LHM Information LHM Fundraising – Gwen Webb/Bal Kainth
Birmingham Children’s Hospital and Young at Heart Freeman Hospital and CHUF
The Evelina Children’s Hospital and ECHO Max Appeal – Julie Wootton
Children’s Heart Federation The Somerville Foundation
Heartline Lagan’s Foundation
Great Ormond Street Children’s Hospital Alder Hey and Manchester Children’s Hospital and CHA
Glenfield Hospital, Keep the Beat and Heartlink Phoenix Cards
Dental Care – Jonathan Craft Stall
Royal Brompton Hospital & Brompton Fountain The Charlie Jones Foundation

5. Little Hearts Matter
Annual General Meeting
Saturday 22nd March 2014
Aston Villa Football Club

6. Welcome
Pete Turner – Chair
Baroness Valerie Howarth – Patron and President

7. Minutes of 2013 AGM
Pete Turner
Chair

8. Treasurer’s
Report
David Baumber
Treasurer

9. Financial highlights
£
Total income 348,499 Up by £85k or 35%
Total expenditure 270,191 Up by £2k or 2%
Net income 78,308 Up by £84k
Total cash - Dec '13 183,206 Up by £71k or 64%

10. Income and Costs over time

11. Vote for the approval of the
2013 annual accounts
David Baumber
Treasurer

12. Vote for the election of
Trustees and Officers
Peter Groves
Vice Chair

13. Vote for the re-election of Trustees
Proposed by: Jonathan Carter
Seconded by: Louise Hall
Pete Turner David Baumber Baroness Valerie Howarth

14. Vote for new Trustees
Proposed by: Maggie Turner
Seconded by: Isabel Baumber
Hannah Palmer

15. In memory of those no
longer with us
Peter Groves
Vice Chair

16. Zac Abram Noah Adu-Gyamfi Emily-Joan Ahern James Alwyn-Clark Neema Andango Benjamin Anderson Freya Anderson Kaitlyn Anthony
Baby Arnhold Jodie Bailey Joel Barribal George Beal-Willey Joshua Beavan Faith Bedford Lillian Beglinger Heidi Bell Scott Benedetti
Samuel Benedict/Rimmer Adrian Bennett Jack Bennett Zeke Bergin Orla Beresford Larissa Berry Lottie Birch Emily Black Amy Blenkinsopp
Hope Bloor Connor Bostock James Boyles Ellie Brazendale Isaac Briggs Maisie-Mae Brown Matthew Bryan Baby Bryant Chase Butler Ethaniel
Bylinski Matthew Cartwright Baby Case Thomas Chapman James Charlton Joseph Chen Thomas Chesworth Adisyn Clark Thomson
Emily Clarke Jeremiah Clarke Bailey Cobby Elizabeth Coghlan Abbie-Mae Cooper Ruth Cosgrove Ashton Cox Michael Crawley Grace Crocker
Finlay Croucher Matthew Crowe Zak Cruse Fionn Cummins Samuel Currie Declan Daly Jake Davies Baby Davies Mark Davy Sam Dawkin
Faith De-Bere Haydon Denham Ben Devine Emily Docherty Wesley Dones Jr. Jason Dunne Elias East Charlie Ellis Freya Emery Ava Eskdale
Raman Facciorusso Peyton Fairfield Jesse Jaymes Feliciano Cerys Fennell Elliott Fever Bral Fien Amy Fitzmaurice Joshua Fletcher
Emma Freedman Erin Fuller Lewis Furness Kolby Gilmore Ben Goldie Baby Golding Jordan Goodman Cameron Gordon Kieron Graham
Lagan Grant Eden Gray Riley Green Matthew Greenhalgh Sophia Groom Stephanie Groves Cameron Haddon Joshua Hall Freddy Hall
Charlie Hamilton Zachary Hartley Riley Hartley/Astill Ellie Hawley Baby Haynes George Henry Kayden Herapath Juan Hernandez
Juliana Hettiarachchi Emily Hey Luke Heywood Sara Higgins Jack Hinchcliffe Natasha Hindley Rocky Beau Holder Stevenson Madison Holland
Alfie Hone Mia Hopwood Bradley Howsham Lexie-Ann Humpherson Louie Hutton Connor Inckle Cameron Ingram Lauren Jenkins
Luke Jenkins Hope Johnston Peyton Johnstone Ben Jones Charlie E Jones David Jones Jake Jones Kaitlyn Jones Kian Jones Max Jordan
Peter Kavanagh Callum Kelly Alex Kerr George Kerr Matthew Kewn Dean Kilpatrick Hannah King Euan Lawson Chloe Leardodd Molly Lloyd
Lennon Lofthouse Stuart Logan Molly Lorimer Sophie Lumb James Mack Shaun Macphee Harry Mantle Cooper Eva Margarit
Victoria Marija Birne Charley Matthews Hudson McAbee Erin McCarthy Elizabeth McElroy Samuel McKeen Lauren McManus
Tiree McPherson Harris Mehmood Elsie Rae Mellor Connall Miles Daniel Miller Lewis Moore William Moore Foy Morgan Maddison Morrell
Eva Morris Jennifer Morton Paige Moyes Bonnie Mulrine Connor Mulstay Caleb Naliyath Ross Nevill Elijah Nevin Adam Newell
Donnacha Nolan Baby Norcott Jason Norman Erin O'Brien Daniel O'Keefe Sadhbh O'Moore Abbie Onions Eoin O'Reilly Cairo Osei-Mansfield
Amelia Owen Caitlin Parkinson Joseph Peck Joshua Perella Ella Perry William Pharoah Jacob Pollard Lucy Powell Lewis Prior Marcus Ratcliffe
Callum Reid Kelly Reynolds Madison Rivenburg Matthew Rothwell Hope Sampson Matthew Santus Robin Schofield Satnam Sehmbi
Ayaat Shah Eiliyah-Willow Shaikh Ella Shannon Kayleigh Smallman Benjamin Smith Harrison Smith Kristian Smith Toby Smith
Tyler-James Smith-Turrell Callum Snelling Vera Sondergaard Molly Speakman Casey-Braxton Spolding Emma Steadman Baby Stelling
Mollie Stevenson Emil Stubbs/Kowacz Darcey Taylor Jessica Thayne Lunn Phoebe Thomas Rebecca Thomas Gracie Thomas-Lane Chloe
Thomasson Joshua Tinworth Joshua Toombs James Truesdale Bobby Tucker Reece Turbitt Sean Turner Will Turner Holly Usher
Jacob Vaughan Benjamin Veerasawmy Jean-Pierre Walker Theo Walker Baby Ward Jaquan Watkins Maxim Webb Tyler-J Wellard Zoe Welsby
Archie Weston Harley Westrop Edward Wheatley Daniel Wheelwright Cameron Williams Nia Williams Jacob Williamson Megan Williamson
Alanah Winfield-Davies Isabella-Rose Wood Joanne Woods Dylan Wylde
In Loving Memory

18. Questions?
Pete Turner
Chair

19. The History Of Little Hearts
Matter

20. First Staff joined the charity in
1999
2003/4
LHM became LHM
Little Hearts Matter
1994
Left Heart Matters
started as a local
support service
Became a Registered
National charity in 19961995 Guys Hospital
started to offer the
Norwood
Surgery for HLHS started in
Birmingham in 1991
2014 Little Hearts Matter is
20 years old.

21. Open Day 1996

22. Open Day 1998

23. Why Does Little Hearts Matter Exist……………………….
Because of the isolation, fear and lack of understanding
created for families when a child is diagnosed as having half a
heart.
So Little Hearts Matter works to
Alleviate isolation by offering a listening ear and family to
family support.
Help to empower families by offering information that
helps them to understand their child’s heart condition and
the lifestyle challenges that they face.
Reduce fear by sharing experiences and offering honest
open support and information.
Work to raise awareness of what life is like when you only
have half a heart,

25. New Publications
• Travel and Trips
• PIP
• MCT diet
• Senior School
• Accessing
University
• Sex Education
• New
Preparation for
Hospital Pack

29. Thank you Oliver

30. The Little Hearts Matter team

31. • 2403 UK members
• 173 overseas members
• 673 child members under the age of 10
• 353 young adults over ten
• We work to support 261 bereaved members.
• Over 2013 we offered support to 3500 people

32. The History and Future Treatment
of
Children with a Single Ventricle Heart.
Mr William Brawn CBE
Consultant Congenital Cardiac Surgeon

33. WiFi
Aston Villa Venue
Taylor 756

34. Magnetic Resonance Imaging
MRI
Dr Simon McGuirk
Consultant Radiologist

35. Balancing your life as a Young Adult
with a
Fontan Circulation
The Fontan Panel

36. Workshop Room
Resuscitation Sky Lounge – Top Floor
Child Behaviour Directors Lounge – 2nd Floor
Fontan Trinity 1 – 1st Floor
Living at home with a small child
0 – 2 years old
Trinity 2 – 1st Floor
Exploring Transplantaion Trinity 3 – 1st Floor

37. The Fontan Procedure

38. What is the Fontan Procedure?

39. Let’s start at the very beginning!

40. Hypoplastic left heart syndrome Univentricular heart
Complex Pulmonary Atresia Tricuspid Atresia

41. What are the aims of Surgery?
• To use the one pump to push blood around the
body.
• To send blood to the lungs from outside the
heart.
• To improve the amount of oxygen filled blood
circulating around the body by separating blue,
deoxygenated blood from red, oxygen filled
blood.

42. First Operations.

43. Second Operation

44. When is the right time to do The Fontan
Procedure?
What will parents notice in their children.
• Growth will have slowed or stopped.
• Even small meals are eaten slowly.
• The children will be more breathless.
• Less able to climb the stairs.
• Increasingly tired.
• The doctors will see a slowing of the heart function.
• Possible increase in the Tricuspid Valve leak.

46. Internal Fontan
External Fontan

47. How to Prepare for the Fontan.
1. Parents need a good understanding of what is planned during the
admission.
2. Play Hospital games and read hospital stories – allowing plenty of
general discussion.
3. Visit the hospital on a pre admission day.
4. Answer all hospital questions honestly – children hear everything.
5. Include all siblings.
6. Plan for at least a three week stay.
7. Arrange boxes of games and toys to be brought to the hospital in
rotation.
8. Arrange for visitors to take turns by the bedside.
9. Ring the hospital to confirm accommodation.

48. Average stay on PICU is
over night.
Aim to take off the ventilator
as soon as possible as it
aids circulation.
Limited fluid intake.
Chest drains will stay in for
some days.
Pain relief will be
intravenous initially then
gradually reduced to oral.
(In some units the children
will be routinely put on a low
fat diet)

49. The Normal post surgery care
• Fluid Balance.
• Chest drain loss.
• Temporary arrhythmias'.
• Chylothorax.
• Special diet.
• Wound infections.
• Anticoagulation

50. What does the Fontan do for them.