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Heart Children Glos Leaflet - Publisher Version2

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Published by lucy, 2016-08-23 16:06:32

Heart Children Glos Leaflet - Publisher Version2

Heart Children Glos Leaflet - Publisher Version2

Does your child have a
heart condition?

1


If your child has recently been diagnosed with a heart problem then

you are probably feeling angry, scared, confused and a whole host
of other different emotions. This is understandable and completely

normal. This leaflet has been designed to try and explain a bit more
about the cardiac service and how it can help you and your child
and what other sources of support are out there for you to access

should you want to.

Children and Young Peoples
Cardiac Service

As a specialist Children’s Surgical Centre, The Paediatrician
Bristol Royal Hospital for Children (BRHC) A Paediatrician is
works together with local Children's a Doctor that
Centres to provide cardiology and cardiac specialises in
surgical care across the whole of the South treating babies
West and South Wales. and children
They offer a wide range of clinical services, and their
from before a child is born and after their diseases.
transition into their adult The Paediatrician
services. This involves a large and with expertise in
experienced team of professionals, Cardiology for
including Cardiologists, Surgeons, Cardiac
Liaison Nurse, Physiologists and Gloucestershire
Psychologists to name but a few. is Dr Jennifer
Your child will have a designated Holman.
consultant cardiologist and cardiac liaison
nurse. Your child's care will be coordinated
between the consultant cardiologist and
the local paediatrician, who has a specialist
interest in cardiology. This will mean that
your child will be able to be seen at clinics
in the outpatients department in
Gloucestershire. However, investigations
such as cardiac catheterisations and any
cardiac surgery will take place in BRHC.

2


The Consultant Paediatric Cardiologist
A cardiologist is a doctor with specialist
extensive training and skill in finding,
treating and preventing diseases of the
heart and blood vessels.
The Consultant Paediatric Cardiologist for
Gloucestershire is Professor Robert Tulloh.

The Cardiac Liaison Nurse
The role of the cardiac nurse is to support
children and their families through all stages
of their journey within cardiac services.
They provide information and advice and
offer support to meet the individual needs
of the family, in and out of hospital. Support
begins from the time of diagnosis and
continues through childhood and into the
transition into adult services. You might
meet the cardiac nurse when you attend
the outpatient clinics at the BRHC. 

The Cardiac Liaison Nurse will also help to prepare you for any
hospital admissions at surgical and pre-assessment clinics where
they take time to explain and answer any questions you may have.
They are also able to refer you to other health professionals such
as social workers, community children’s nurses, psychologists and
relevant support groups. The Cardiac Liaison Nurse for
Gloucestershire is Cathy Harrington. Cathy can be contacted on
0117 342 8286 during office hours. If you have questions out of
hours, you can contact the children’s ward at Gloucester Royal
Hospital or the cardiac ward at BRHC 0117 342 8332.

3


What are Clinics and what
to expect

Clinics provide the opportunity for you to meet
with your child's doctors such as the cardiologist or
paediatrician, ask any questions you may have
about your child's condition and treatments and
discuss any particular issues or worries that you
may have. Clinics are an opportunity to diagnose
or regularly review your child’s cardiac condition
and ensure it is well managed and that they are
receiving the right levels of treatment and care.
Your child will initially be seen by the children’s
outpatient nurse who will record their weight,
height, blood pressure and oxygen
saturations. They will then be assessed by the
consultant or a specialist trainee, who will decide
whether any further investigations are needed
such as a chest X-ray, an echocardiogram or an
electrocardiogram (ECG).

An ECG (Electrocardiogram) is a recording of the
electrical activity of the heart. It is a simple test
where sticky patches called electrodes are put on
the child’s arms, legs and chest. These are
connected by wires to an ECG recording machine
that picks up the electrical signals that make your
heart beat. This electrical activity is recorded and
printed onto paper. This test helps inform your
cardiologist about the electrical function of your
heart. It doesn’t hurt your child at all although the
sticky patches are similar to when you peel small
plasters off.

4


An Echocardiogram is an ultrasound scan of
the heart. It is very similar to the scans that are
carried out during pregnancy. It doesn’t hurt
your child at all. Using cold jelly, a probe on
the chest and a computer, it shows the heart
structures in considerable detail. This enables
the cardiologist to determine what is present
and the appropriate treatment.
Sometimes a child may be sent for a chest X-

What if I have more
questions when I get home?

You can contact your cardiac nurse who will be
able to find the answers for you, or you can speak
to your child's GP who may be able to help with
more general queries.

What if I’m worried about my
child between appointments

You should consult your GP in the first instance if
you think your child is unwell. If you have
general concerns, for instance questions
regarding any restriction on lifestyle choices,
the cardiac team will be able to answer many of
these issues.

5


General Tips to help at
clinics and other medical
appointments

Before your Please bring
appointment it can help
any medication
you child is

taking, to your
appointment.

to write down any

questions you may have

so you don’t forget

them. A notepad and pen comes in

handy to write down anything

you may want to remember and

some parents recommend taking

a relative or friend to help with

notetaking as it can be difficult to

jot things down while also looking

after a child.

6


It can also be helpful to take
anything that your child likes
that may help them to settle

or feel comfortable, like
favourite toys or comforters,
or even chocolate buttons!

Some parents have found it useful If you have a
to keep all of their child’s medical smartphone or tablet,

information together in a folder taking their favourite
that they take with them to each TV show or game can
appointment, such as previous
letters from the doctor or hospital. be really useful too,
That way they can refer back to especially if a clinic is
any information quickly should it running a little behind

be useful. on time.

Local Support

Heart Children Gloucestershire is a group set up and run by Mums,
Ruth and Lucy, to support local families who have children with heart
conditions. As well as support, they offer information, opportunities
to get together and work with other services and professionals to
improve things for families like yours. Find them on facebook at
Facebook.com/groups/heartchildrenglos or you can email on
[email protected]

7


Other Useful Sources of
Support

The British Heart Foundation – www.bhf.org.uk
A national charity and the largest independent funder of cardiovascular re-
search. They campaign, offer information and have a heart helpline – Tel:
0300 330 3311

Children’s Heart Federation - www.chfed.org.uk
Dedicated to helping children with congenital or acquired heart disease and
their families in Great Britain and Northern Ireland, they provide direct support
giving information and advice via a helpline 0808 808 5000, factsheets, publi-
cations and giving out small grants. They also develop policy and campaign
on issues that affect families of children with a heart condition.

Tiny Tickers – www.tinytickers.org
Tiny Tickers is a small national charity that aims to improve the detection, care
and treatment of congenital heart disease (CHD) in babies. They offer infor-
mation and support, train sonographers to spot defects during routine preg-
nancy scans; campaign to improve service standards and raise awareness.

Heartline - www.heartline.org.uk
Heartline supports children with heart disorders and their families, as well as
information, resources and a forum they provide free wetsuits for heart ba-
bies, discounted caravan holidays and other activities.

Down’s heart group - http://www.dhg.org.uk

Kawasaki Disease Support Group - http://www.kssg.org.uk

Bristol Royal Hospital for Children
For further information about the hospital and cardiac service, the Website of
the cardiac department is
http://www.uhbristol.nhs.uk/patients-and-visitors/your-hospitals/bristol-royal-
hospital-for-children/the-paediatric-cardiac-service/

Professor Robert Tulloh
http://www.bristol.ac.uk/cardiovascular/people/robert-m-tulloh/index.html

8


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