Stillbirth support resources

ISSN 0256-5004 (Print)

AIMS Journal, 2015, Vol 27 No 3

Shane Ridley highlights good support organisations and their websites

Groups supporting parents

There are many sources of support listed on the Internet and I have picked out a number which are relevant and current. I found others but chose not to add them to this list - many, for instance, I found to be not kept up-to-date. My apologies if I have missed any good ones.

UK based

Sands
www.uk-sands.org
The 'go to' site for up-to-date resources for parents and health workers, and listed are details of current and completed research projects and campaigns. There is a very detailed list of links and organisations on this page: http://www.uk-sands.org/resources/useful-links-andorganisations

Child Bereavement UK
www.childbereavementuk.org
A charity that provides resources and support when a baby or child dies, including after miscarriage or stillbirth. Support includes a helpline, groups, information sheets and training packages for health workers.

The Baby Centre
www.babycentre.co.uk/a1014800/when-a-baby-is-stillborn
This is extremely well written and full of information. It is the very best piece I found on the explanation of stillbirth and what it means for the parents. It was last reviewed in March 2015 and I felt confident reading it.

Tommy's
www.tommys.org
Tommy's fund research into stillbirth, premature birth and miscarriage as well as providing information for parents. The summaries of on-going research are well worth reading. Tommy's has set up the UK's first placenta clinic to focus on the placenta to improve monitoring of women whose pregnancies are affected by fetal growth restriction. There are many write-ups to read, which shows how much work is going on to reduce the stillbirth rate.

Miscarriage Association
www.miscarriageassociation.org.uk
There is a wealth of information including counselling services after loss. In particular there is another list of remembrance services and details of Baby Loss Awareness Week held in October every year.

Remember My Baby
www.remembermybaby.org.uk
Nicky Heppenstall explains more about this organisation in her article on page 7. The volunteers aim to promote baby remembrance photography across the UK.

SiMBA
www.simbacharity.org.uk
Simpson's Memory Box Appeal is a Scottish charity and Its main aim is to provide memories for parents who have suffered baby loss, not only in Scotland but across the UK. It has lovely ideas including memory boxes and trees of tranquillity, as well as promoting family rooms in hospitals, providing gifts of cuddle cots, beds and cameras to labour wards and setting up support groups.

Count the Kicks
www.countthekicks.org.uk
This is a charity that aims to help mums-to-be to understand their baby's movements. The resources are available to dads-to-be too. It has free leaflets, posters and antenatal note stickers.

Child Death Helpline
childdeathhelpline.org.uk
Bereaved parent volunteers, who are supported by a professional team, staff the helpline.

The Lily Mae Foundation
www.lilymaefoundation.org
The Lily Mae Foundations works closely with Sands, mainly in the West Midlands area.

International

I could only do my search in English, so have not found the information for non-English speaking countries. If our overseas readers know of any other sites, please let us know.

The International Stillbirth Alliance
www.stillbirthalliance.org/
They have held conferences in 2013 and 2014 - the abstracts are available online and contain data on research results. Unfortunately, though, the newsletter is not kept up-to-date, the last one being October 2011.

Stillbirth in Ireland
Féileacáin

www.feileacain.ie Butterflies or Féileacáin are said to be the spirits of the departed who return to visit their favourite place and their loved ones to reassure them that they are alright. This is one of the sites I thought was most impressive, it's fairly new and is gentle but upbeat. There are some lovely ideas for remembering babies and the supporters of this charity are certainly providing a positive and thoughtful website and services.

Stillbirth in Australia and New Zealand

The Stillbirth Foundation
www.stillbirthfoundation.org.au
This is similar to Sands, including information about a potential mobile phone App called 'My Baby's Movements', similar to the Count the Kicks campaign in the UK. They also have information about research into 'maternal sleep health'.

Stillbirth in the USA

The Star Legacy Foundation
starlegacyfoundation.org
A very useful website, again similar to Sands, in particular there is an extensive list of worldwide published research updated to 2013 as of now. It also has a campaign on See Me, Feel Me - based on counting the kicks the baby makes. It highlights a list of potential considerations that may be linked with poor pregnancy outcomes. For example high and low blood pressure, snoring or having trouble breathing at night; along with potential changes in behaviour or practice such as sleeping on the left side which enhances blood flow to the baby and avoiding invasive vaginal examinations and membrane stripping which can increase the risk of infection. It also has a campaign called ASAP - Action for Stillbirth Awareness and Prevention.

This is a very comprehensive website and well worth reading. It includes a blog called Stillbirth Matters.

1st Breath
www.1stbreath.org
An organisation similar to Sands. It has an interesting App for women pregnant after previously experiencing a stillbirth (unfortunately named) SPROUT Pregnancy Essentials. It also promotes a device called Kick Trak which automates a kick chart - for more information on counting kicks see page 15).

AIMS will be keeping this information on the website, so if any reader would like to add to it, that would be most helpful and very welcome.


AIMS supports all maternity service users to navigate the system as it exists, and campaigns for a system which truly meets the needs of all. AIMS does not give medical advice, but instead we focus on helping women to find the information that they need to make informed decisions about what is right for them, and support them to have their decisions respected by their health care providers. The AIMS Helpline volunteers will be happy to provide further information and support. Please email helpline@aims.org.uk or ring 0300 365 0663.

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