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20th Anniversary AGM and Open Day presentation. First presented at Little Hearts Matter's 20th Anniversary Open Day on 22/03/2014.
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Welcome to the
20th Anniversary AGM and Open Day
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
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 play10.00- 10.30 AGM
Minute’s silence In Memory Active Listening and CommunicationAll age groups
Hands on session
Get to Know You
Games
10.30 – 10.40 The History of LHMSuzie 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 McGaffinNicky Pope
11.10 – 11.30 Coffee break Break 11.30 Break 11.20 to 11.3011.30 – 12.00 Dr Simon McGuirk
MRIWhat it means now and in the future
Confidence buildingDrama session
Story telling life with half a working heart
(capturing the voice of young members)
Story tellingWhat was being in
hospital like?
BCH Play team
12.00 –12 45
Balancing your life as a young adult with a Fontan CirculationThe Fontan Panel
Pick up the Children from the Crèche
12.30 – 13.30 Lunch Computer, Toy Play
13.30 – 15.00Youth Council Session
What do Youth members want from the Youth Service
Programme
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 operationSuzie Hutchinson
Supporting a baby with
half a working heartPaddy 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 HallBenefits and DLA support – Suzie Hutchinson LHM Awareness – Emma Pelling/Joe StevensGeneral LHM Information LHM Fundraising – Gwen Webb/Bal KainthBirmingham Children’s Hospital and Young at Heart Freeman Hospital and CHUFThe Evelina Children’s Hospital and ECHO Max Appeal – Julie WoottonChildren’s Heart Federation The Somerville FoundationHeartline Lagan’s FoundationGreat 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 StallRoyal Brompton Hospital & Brompton Fountain The Charlie Jones Foundation
Little Hearts Matter
Annual General Meeting
Saturday 22nd March 2014
Aston Villa Football Club
Little Hearts Matter
Annual General Meeting
Saturday 22nd March 2014
Aston Villa Football Club
Welcome
Pete Turner – Chair
Baroness Valerie Howarth – Patron and President
Minutes of 2013 AGM
Pete Turner
Chair
Treasurer’s
Report
David Baumber
Treasurer
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%
Income and Costs over time
Vote for the approval of the 2013 annual accounts
David Baumber
Treasurer
Vote for the election of Trustees and Officers
Peter Groves
Vice Chair
Vote for the re-election of Trustees
Proposed by: Jonathan Carter
Seconded by: Louise Hall
Pete Turner David Baumber Baroness Valerie Howarth
Vote for new Trustees
Proposed by: Maggie Turner
Seconded by: Isabel Baumber
Hannah Palmer
In memory of those no longer with us
Peter Groves
Vice Chair
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
Questions?
Pete Turner
Chair
The History Of Little Hearts Matter
First Staff joined the charity in 1999
2003/4 LHM became LHM Little Hearts Matter
1994Left 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.
Open Day 1996
Open Day 1998
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,
New Publications• Travel and Trips• PIP • MCT diet• Senior School• Accessing
University• Sex Education• New
Preparation for Hospital Pack
Thank you Oliver
The Little Hearts Matter team
• 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
The History and Future Treatmentof
Children with a Single Ventricle Heart.
Mr William Brawn CBE
Consultant Congenital Cardiac Surgeon
WiFi
Aston Villa Venue
Taylor 756
Magnetic Resonance ImagingMRI
Dr Simon McGuirkConsultant Radiologist
Balancing your life as a Young Adult with a
Fontan Circulation
The Fontan Panel
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
The Fontan Procedure
What is the Fontan Procedure?
Let’s start at the very beginning!
Hypoplastic left heart syndrome Univentricular heart
Complex Pulmonary Atresia Tricuspid Atresia
What are the aims of Surgery?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.
First Operations.
Second Operation
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.
Internal Fontan
External Fontan
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.
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)
The Normal post surgery care
• Fluid Balance.• Chest drain loss.• Temporary arrhythmias'.• Chylothorax.• Special diet.• Wound infections.• Anticoagulation
What does the Fontan do for them.What does the Fontan do for them.
