Support for parents & families
It can be devastating to learn that your unborn child
has a heart problem, but it can be comforting to know that you
are not alone.
You can talk to your doctor, GP or midwife, or a support group.
Support groups can provide help and advice on general
issues in pregnancy as well as complex issues, such as
congenital heart disease (CoHD) and special conditions. You
can also meet other parents with similar experiences.
Links to information, advice and support in the UK
There are many UK organisations that provide support.
These operate nationally, locally, or may be associated with
a particular hospital.
This is a small selection of
links. No endorsements are implied. Suggestions
are
welcome. Please see our Terms of Use.
Screening & Pregnancy (Before
Birth / Antenatal)
ARC-UK, advice on screening in pregnancy (see: ARC links)
healthtalkonline (formerly DIPEx), parents share their experiences of heart screening
National Childbirth Trust (NCT),
nctpregnancyandbabycare.com
& nctms.co.uk, Tel. 0870 444 8707.
The "experiences" register helps parents to get in touch with each other.
Nuchal Translucency:
NHS Nuchal Translucency |
More information
on Nuchals by BabyCentre
...
Antenatal screening & ultrasound:
"Antenatal_testing: ultrasound_scans" by BabyWorld ...
FetalAnomalyScreening, the NHS Fetal Anomaly
Screening Programme
More
information about Pregnancy:
Bounty, UK
parenting website, featuring useful pregnancy advice (see: "Planning
Pregnancy" pages)
Tommys, has useful pre-pregnancy advice (see: "information centre" pages)
Wellbeing, part of the Royal College of Obstetrics & Gynaecology
features useful links:
Wellbeing links
Family Planning Association (fpa), advice on pregnancy
Anxiety in pregnancy,
public health information on stress and anxiety in pregnancy
from NICE
Federation of Antenatal
Teachers (FEDANT), UK body for Antenatal Teachers &
antenatal education providers
My Family
Is Getting BIGGER!, introducing a new baby into the
family, for pre-school children and under
TheFamilyGrapevine, local family phonebook
Link :
also see
our page on Screening for congenital
heart disease
Maternity Hospitals (Around Birth / Perinatal)
NHS Directory of UK
Hospitals:
England |
Scotland |
Wales |
N.
Ireland
Find a Hospital:
Hospital
Guide (MSN & dr
foster) | UK Maternity Hospitals:
Birthchoiceuk.com
(see Maternity Statistics
with
BabyFriendly details)
Water birth:
ActiveBirthCentre.com
Breastfeeding Guidelines:
BabyFriendly.org.uk (UNICEF) | Postnatal Care Guidelines: NICE.org.uk
Carbon Monoxide Awareness:
CO-Awareness.co.uk
| Parenting: Just4parents.co.uk
Dept. of Health (DH),
http://www.dh.gov.uk/en/index.htm
NHS Direct (0845 4647),
http://www.nhsdirect.nhs.uk/
More links: visit our
Links page for more online information
Children & Adult Congenital Heart information (After
Delivery / Postnatal)
British Heart Foundation (BHF), see "congenital heart
information"
Children's
Heart Federation (CHF), freephone
0808 808 5000 (9.30-16.30, Mon-Fri.)
CHF provides information on congenital heart disease with links to
over 20 groups concerned with heart conditions, or attached to
local Paediatric Cardiology Centres.
Heartline, for children with heart conditions & their
families (also see their "Links" page)
ECHO-evelina.org.uk, "Links & Resources", Evelina
Children’s
Heart
Organisation, Guy’s & St. Thomas’ Hospital Trust, SE London
TheBromptonFountain Royal
Brompton and Harefield Family
Support Group, London
HeartChild.info, The Association of Children with Heart Disorders (TACHD)
(also see
their "Other Resources" page)
Cardiac Risk
in the Young, support for sudden cardiac death (often
associated with arrhythmia)
SADS uk, sudden
arrhythmic death syndrome trust
Adult Congenital Heart Disease (GUCH) charity,
support for adults with CoHD
The British
Cardiac Patients Association (BCPA), support,
reassurance and advice to cardiac patients, their families
and carers
Primary Care
Cardiovascular Society, promoting high quality
cardiovascular care in the primary care (GP) setting
Unique, the charity for rare
chromosome disorders
More links: visit our
Links page
for more information on congenital heart disease on the Web.
Bereavement
Child Bereavement Trust
www.childbereavement.org.uk, tel. 01494 446648
Sands (Stillbirth & Neonatal death charity),
www.uk-sands.org, tel.
020 7436 5881 (helpline)
Winston's Wish (bereaved children & young people) www.winstonswish.org.uk
Also refer to Counsellors or Counselling Services in your
area and visit our
Links page for more information.
Links
For more links about CoHD visit our
Links page
Feedback
If you have questions, suggestions or feedback,
please contact us
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