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 and special conditions. You
can also meet other parents with similar problems.
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)
DIPEx, parents share their experiences of 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 ...
More
information about Pregnancy:
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
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)
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 Heart information (Postnatal)
British Heart Foundation (BHF), see "congenital heart
information"
Children's
Heart Federation (CHF), freephone
0808 808 5000 (9.30-21.30, Mon-Fri.)
CHF provides publications and links to groups concerned with special
heart conditions, or attached to
local
Paediatric Cardiology Centres. Information
mainly concerns children, so is most useful after a baby is born.
Heartline, for children with heart conditions & their
families (also see their "Links" page)
ECHO-evelina.org.uk, "Links & Resources", Evelina
Children’s
Heart
Organisation, within
Guy’s & St. Thomas’ Hospital Trust, SE London
www.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.
Links
For more links visit our
Links page
Feedback
If you have questions, suggestions or feedback,
please contact us
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