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Below, you can find information about the various charities and support organisations set up to help patients and families.
Children's Heart Association
A support group run by families and friends of cardiac children for families with, or who have had, children with heart disorders
23 Hesketh Drive, Heswall, Wirral
Support Group for teenagers run by the Nurse Specialists based at Manchester Royal Infirmary
Home support for children under the age of 5 diagnosed with Heart Defects (CHD) or feeding difficulties
Enquiries - email@example.com
Office: 01204 468300
British Heart Foundation
UK's number one national heart charity
Greater London House
180 Hampstead Road
LONDON, NW1 7AW
020 7544 000 or 0300 330 3311
Link: Congenital heart disease
Children's Heart Federation
National children’s heart charity working to meet the needs of children and young people with congenital and acquired heart conditions and their families
Level One, 2-4 Great Eastern Street
LONDON, EC2A 3NW
0808 808 5000
Little Hearts Matter
Offers support and information for families with children/babies with single ventricle heart conditions
11 Greenfield Crescent
Edgbaston,Birmingham, B15 3AU
0121 455 8982
Supporting families affected by DiGeorge Syndrome, VCFS and 22q11.2 deletion
13 Meriden Avenue
Wollaston, Stourbridge, DY8 4QN
01384 821 227
01562 710 708
Downs Heart Group
Provides support and information relating to cardiac conditions associated with Down’s Syndrome
17 Cantilupe Close
Eaton Bray, Dunstable, LU6 2EA
The Somerville Foundation
Saracen’s House, 25 St Margarets Green, Ipswich, IP4 2BN
0800 854 759
Information and support for patients and familes with heart rhythm problems
PO Box 3697
Stratford upon Avon
Warwickshire, CV37 8YL
Cardiac Risk in the Young
A charity working to raise awareness of conditions which can lead to Sudden Cardiac Death
Unit 7, Epsom Downs, Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR
Tel 01737 363222
Heard a term from your consultant or nurse and not sure what it means? You can find out more about the most commonly used cardiac terms below, as well as contact information for the department.
Ablation: An electric current or radio- frequency energy can be used via catheter to destroy the extra pathways in the heart which cause tachycardia,
Atria: Plural of atrium. The left atrium pumps oxygenated blood into the left ventricles. The right atrium pumps deoxygenated blood into the right ventricle from where it is pumped into the left ventricle.
Absent Pulmonary Valve Syndrome: The pulmonary valve is not formed properly, there is a hole between the ventricles and the pulmonary arteries are much wider than they should be.
Atrial Septal Defect (ASD): A hole in the wall between the atria
Amplatzer Device: Used to close the hole between the right & left atrium via a catheter.
Atrial Septostomy: Making a hole between the two atrial chambers.
Analgesic: Medicine given to stop pain
Atrioventricular Septal Defect (AVSD): A hole between the atria (atria septal defect, or ASD), a hole between the ventricles (ventricular septal defect or VSD) and a single valve instead of a tricuspid valve and a mitral valve.
Angiogram: An X-Ray of the heart assisted by a liquid introduced through a catheter.
Atrium: An upper chamber of the heart where blood collects before passing to the ventricle.
Anomalous Pulmonary Venous Drainage: The pulmonary veins carry red blood from the lungs to the right side of the heart instead of the left side.
Balloon Dilation: Using a tube (catheter) to reach the narrow part of the heart and making it bigger by inflating a balloon on the end of the catheter.
Anticoagulant: A medicine such as Warfarin given to stop blood clots forming.
Balloon Septostomy: a tube (catheter) is put into the heart and a balloon inflated on the end of it to make a hole, or increase the size of a hole, in the wall (septum) of the heart.
Aorta: Main artery, which carries blood from the heart to the body.
Banding: Making the pulmonary artery narrower with a band to reduce blood flow to the lungs.
Aortic Stenosis: A narrowing which restricts red blood from moving from the left ventricle into the aorta.
Bicuspid: (Of a valve) having two cusps, or leaflets
Aortic Valve: The valve between the left ventricle and the aorta.
Biopsy: Removal of a small piece of tissue for examination
Arrhythmia: Out of rhythm- the heart is beating too fast, too slowly or irregularly.
Blue Blood: Blood which is returning from the body to the heart and so pumped to the lungs, where it will pick up oxygen and become red blood.
Arterial Switch: Reattaching the aorta and the pulmonary artery the right way around when the baby is born with Transposition of the Great Arteries (TGA)
Bradycardia: Slow heart beat
BT (Blalock Taussig) Shunt: Taking blood from an arm artery to the lungs.
Dextra Cardia: The heart is on the tight, rather than the left, side of the chest.
Bypass: Using a machine to bypass the heart and lungs during surgery
Digoxin: A medicine given to increase the strength, or slow down the rate, of the contraction of the heart.
Candida: a fungal infection
Dilated Cardiomyopathy: A condition in which the heart becomes enlarged and weak, sometimes because of a virus.
Cardiac: Relating to the heart
Diuretic Medicines: These medicines help the kidneys pass more water, so reducing excess fluid in the organs, especially the lungs.
Cardiac Catheter: a tube, which is put into the heart via a vein. It is used to help diagnosis, by measuring pressures very accurately, or can treat a problem such as widening an artery, or closing a hole.
Double Inlet Ventricle: DIRV- Double Inlet Right Ventricle, DILV- Double Inlet Left Ventricle- There is one large ventricle into which both atria empty their blood through either one or two valves, and usually a second smaller ventricle.
Cardiologist: Doctors specialising in heart
Double Outlet Ventricle: DORV- Double Outlet Right Ventricle. DOLV- Double Outlet Left Ventricle- One ventricle pumps blood into both the aorta and pulmonary artery, although there
Cardiomyopathy: Weakness of the heart muscle
Duocal: A food supplement to help children gain weight faster.
Chest Stented Open: When there is strong reason to suppose that further surgery is needed the opening in the chest is not closed.
ECG: (Electrocardiogram) - for measuring the electrical activity of the heart.
Chest Drains: Tubes often left in after heart surgery to drain away fluid.
Echo (Echocardiogram) – an image of the heart created by using high frequency sound waves.
Chylothorax: A build-up of lymphatic fluids leaking into the lungs following surgery.
ECMO (Extra Corporeal Membrane Oxygenation) – A by- pass machine that can be used to support the heart and lungs to aid their recovery.
CT Scan (Computed Tomography) a procedure that produces an image of tissue density in a complete cross-section of the part of the body being scanned.
EEG (Electroencephalogram) – A print out of the electrical activity in the brain.
Coarctation of the Aorta: Narrowing in the aorta- the artery taking blood from the heart to the body.
Endocarditis – An infection of the lining of the heart.
Congenital: Describes a condition which is present at birth.
Glenn Shunt- The superior vena cava, bringing blood back to the right side of the heart, is connected to the pulmonary artery, so taking blood directly to the lungs, and bypassing the right ventricle.
CPAP (Constant Positive Airway Pressure)- Keeping small airways open, especially before completely off ventilation.
Heart Murmur- A murmur is a sound made by blood moving round the heart; sometimes, but not always this could be caused by a heart defect.
Cyanosed- There is not enough oxygen in the blood, causing the skin to look blue in some children.
Heparin- A drug given directly into a vein which thins the blood when there is a danger of clotting (an anticoagulant)
HDU- High Dependency Unit – unit where a child receives a lot of care. Children are sometimes transferred from Intensive Care Units once they are off the ventilator, but they need more care than can be given on the ward.
Pacemaker- A small battery placed under the skin and joined to the heart by pacing wires, which measure the pulse and corrects too fast or too slow rhythms.
Homograft- Putting in human tissue- such valve or artery.
Pacing box- When the pulse rate is very irregular or slow and external pacemaker can be used to regulate the heart by attaching it to temporary pacing wires often put in place after heart surgery in case they should be needed.
Hypertrophic Cardiomyopathy: The heart muscle becomes so thick that it can interfere with its proper functioning.
Pacing wire- There is often a problem with the heart rhythm after heart surgery, so a pacing wire is left in place just in case it is needed.
Hypoplastic Right Ventricle: The right ventricle has not developed properly so it is small.
Partial AVSD: A defect is present in the lower part of the Atrial Septum- (the partition separating the Atriums). This allows red blood to pass through into the right side of the heart, leading to enlargement of the right ventricle and excessive flow in the lung circulation.
INR (International Normalised Ratio) – A blood test for patients mainly on Warfarin to detect how fast the blood clots, used to adjust the amount of anticoagulant prescribed.
Pathway- An anticipated plan of care prior to and following an operation of cardiac catheterisation.
IV (Intra-venous) - antibiotics- Antibiotics directly into the blood stream.
PDA- Patent or Persistent Ductus Arteriosus- a passage used for circulation before the baby is born remains open, instead of closing shortly after birth. This causes red blood to return from the aorta back to the lungs.
IV (Intra-venous) drugs – Drugs given directly into the blood stream.
P.E.G (Percutaneous Endoscopic Gastrostomy) – A tube is inserted into the stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate.
Kidney Dialysis- Used to take impurities from the blood when the kidneys are not working properly.
Perfusionist- A specialist that operates the heart- lung bypass machine.
MAPCA’s (Major Aorto-Pulmonary collateral arteries)- A number of additional arteries come from the aorta and supply the lungs with blood.
Pericardial Effusion- Fluid collects in the pericardial sac- the outer covering of the heart- which can be drawn off using a needle, or drained using diuretics.
Mitral Valve Stenosis- The Mitral Valve in the heart opens to let oxygenated blood to pass into the left ventricle, and then closes as it is pumped into the aorta and so around the body. Stenosis means that it is narrow, therefore not allowing enough blood through, causing backflow to the lungs.
Portage: A service operated by some local authorities whereby advice and support is given to parents to improve the progress of children with disabilities.
NG Tube- A naso-gastric tube – for feeding the child through the nose directly into the stomach. This is so babies who are breathless get enough food.
PICU- Paediatric Intensive Care Unit.
Prophylactic- Describes a medicine of procedure intended to prevent illness.
Stent- A short, metal mesh tube. Using balloon dilation this is expanded into a narrow artery to hold it open.
Pulmonary- to do with lungs
Sternum- The breastbone.
Pulmonary Artery- The blood vessel that takes blood from the heart to the lungs.
SVT (Supra-Ventricular Tachycardia) - a very fast heart beat
Pulmonary Atresia- Blood cannot be pumped to the lungs from the right ventricle through the pulmonary artery, which is blocked or missing.
Tachycardia- Fast heartbeat.
Pulmonary Hypertension- high pressure of blood moving into the lungs.
TOF (Tetralogy of Fallot) – A Ventricular Septal Defect- a hole between the two ventricles and pulmonary stenosis- a narrowing between the right ventricle and the artery carrying blood to the lungs.
Pulmonary Stenosis- A narrowing between the right ventricle and the lung artery.
Taussig-Bing Anomaly- A Double Outlet Right Ventricle with VSD lying under the pulmonary artery, this may also have TGA (Transposition of the Great Arteries)
Ross Procedure- Replacing the child’s aortic valve with his or her own pulmonary valve.
TCPC- Total Cavo- Pulmonary Connection- a surgical procedure that connects blood returning from the body directly to the pulmonary arteries, bypassing the right side of the heart.
RSV (Respiratory Syncytial Virus) - A virus that causes bronchiolitis.
T.O.E- (Trans-oesophageal Echocardiogram) A small scope passed down the throat to look at the back of the heart.
Red Blood- Blood which, has picked up oxygen from the lungs and travels through the left side of the heart to be pumped around the body.
SATS- (Saturation Levels) of oxygen in the blood.
Tracheostomy- a hole cut into the windpipe to help breathing.
Septostomy- Making a hole in the septum, the wall between the left and right chambers of the heart.
TGA (Transposition of the Great Arteries) The big arties, which should be taking blue blood from the heart to the lungs, and red blood from the heart to the body, are the round the wrong way. This means that deoxygenated blood goes back to the body and oxygenated blood from the lungs is directed back to the lungs.
Shunt- A natural or artificially created passageway between two parts of the heart.
Tricuspid Atresia- The Tricuspid valve is absent.
Situs Inversus- A mirror image arrangement of organs, so the heart and stomach are on the right and the liver and spleen on the left.
Tricuspid Valve- The valve between the right atrium and right ventricle, which as three cusps.
Spell- (Particular with Tetralogy of Fallot) the child becomes blue, breathless and limp for a period of time.
Truncus Arteriosis- There is only single artery arising from the heart, which then divides into the lung artery and body artery. There is, in addition, a large hole between the two pumping chambers.
Ventricles- Pumping chambers of the heart- left ventricle pumps blood round the body and the right ventricle pumps blood to the lungs.
VSD- Ventricular Septal Defect – a hole between the two ventricles- the pumping chamber of the heart.
Parents/Carers and siblings can visit anytime. All other visitors can visit between 2pm-7pm.
Children 0-16 years of age who wish to visit and are not siblings should get permission from the nurse in charge before they arrive. All child visitors must accompanied by a Parent/Carer and a maximum of three people only at one time around a bed.
Both Parents/Carers can go to the anaesthetic room with the child.
Facilities are available for one parent to sleep at the child's bedside, if they wish to do so.
Rooms are available for families who are not local to the hospital at Ronald McDonald House. This is a charity independent of Alder Hey Children's Hospital. Nursing staff are happy to request rooms for families but the decidion to allocate rooms remains with the staff at Ronald McDonald House. If families wish to request a room in Ronald McDonald House they should advise staff when their child is admitted.
Consultant led ward rounds start each day from 8:00am in the Neonatal Unit and from 9:15am in the Cardiac Unit. This is an excellent time for parents to discuss their child's progress and plan of care with doctors and ward staff.
Each ward has an area near the patient bedrooms for parents to make hot and cold drinks and chat with other parents.
Food and Drink-
Parents are welcome to bring food and drink onto the ward. All hot drinks must be in a cup which has a lid. Parents and visitors are not allowed in the ward kitchen, this is strictly staff only. A small parents kitchen with a fridge is availble next to the play room in the yellow zone. Parents are requested to keep the areas tidy and to wash their dishes after use.
Hot food is served in the Atrium Restaurant at;
Yes, midwives are available
Financial support -can be availble on case by case basis
Health Promotion - We think it is important to encourage healthy eating and excercise and we do this in a fun. enaging way. You can even run for charity, to raise funds for the hospital. Our Smile Clinic teaches childrens how to brush their teeth properly and we provide 'stop smoking' support for families and staff.
Alder Centre- Our Alder Centre provides support and services to bereaved familes, including counselling, support groups and the National Child Death Helpline. You can read more on the Alder Centre Department pages.
Ronald McDonald House- Ronald McDonald House is an independent charity providing free on- site accoundation for families. You can find more details on our Ronald McDonald House page. https://www.alderhey.nhs.uk/parents-and-patients/ronald-mcdonald-house
Yes, CPR Training link- https://www.treasurehuntadventurepacks.com/offer/T6tkKUwU
Yes, nurse on the ward at discharge will make sure parents are aware how to confidently administer and medication required.
There is a Warfarin Information leaflet available on the Ward 1C page.
The Hopsital School at Alder Hey teaches inpatients of statutory school age and aimes to provide a positive and enjoyable learning experience for all pupils within the National Curriculum framework. Children who are well enough may have lessons on their ward from hospital teachers.
Teachers may also contacts schools of children who are in hospital for longer stays to find out whats work they are missing.
For more information-
Pre school and information for schools is available from us on an individual basis, in conjunction with the school nurse. Enquire with your nurse specialist.
Transition is a process of preparing young people and their families for moving over to adult congential heart service Liverpool Heart and Chest Hospital, between the ages of 16-18.
More information can be found on our Transition page.
Cardiac Nurse Specialists
Cardiac Number: 0151 252 5291
For out of hours, Non-Emergencies, please leave a message and a Cardiac Nurse Specialist will get back to you.
For Out of hours Emergencies, please contact Alder Hey Children’s Hospital Switch Board on 0151 228 4811 to be put through to Ward 1C for advice.
Alder Hey Children's Charity