Supporting families who have experienced baby loss

Baby Loss Awareness Week takes place takes place 9 - 15 October this year.

As part of this, our Hull 0-19 ISPHN service would like to share with you one of the programmes we offer to support bereaved families.

The CONI (Care of the Next Infant) programme offers emotional and practical support to families who have experienced the sudden and unexpected death of a baby.

CONI is a collaboration between the Lullaby Trust and the NHS, and the aim is that every family, who have experienced a sudden infant death of a child under 2 years of age, should receive adequate support with a subsequent baby, throughout pregnancy and the early months.

The CONI scheme exists to help NHS Community Health and Hospital services provide integrated care and support for families, and it is offered to parents expecting a new baby, where either parent has previously experienced baby loss. The programme can also be offered to support families with a surviving child(ren) from a multiple birth, where one baby has died unexpectedly.

The referral process usually starts with the midwife, who identifies parents early in their pregnancy, and in the new-born period. They introduce the CONI programme to parents and refer antenatally to the local co-ordinator. This can also be done by Health Visitors or other health professionals as needed.

Families accessing the CONI programme can have as much or as little support as they wish, as this is led by the parent. With help from a local CONI co-ordinator, you can also choose to engage with:

• Increased contact – more contact with a Health Visitor or Health Professional so you can talk freely about any worries you have and seek advice
• Basic life support training – training in what to do if your baby stops breathing
• Symptom diary – a way to record your baby’s health which you can talk about with your Health Visitor or Health Professional
• Baby Check App – a smartphone app that helps you decide if your baby needs medical help
• Detailed weight chart – to monitor your baby’s growth and help you to see changes that may mean your baby should be seen by a doctor
• Room thermometer – to help you keep the room where your baby sleeps at a safe temperature, plus tips on bedding and clothing
• CONI healthcare passport – a helpful information sheet that goes inside your baby’s Red Book, so you know who to speak to if your baby becomes unwell

For further information about the CONI programme, please visit: https://www.lullabytrust.org.uk/professionals/care-of-next-infant/information-for-coni-coordinators

Alternatively, please speak to your Midwife or Health Visitor, who can give you more information about CONI and advice on keeping your baby safe and well.

Get involved this Baby Loss Awareness Week

It is so important to spread awareness of baby loss and ensure families are equipped with the knowledge to keep their loved ones safe.

For more information about keeping babies safe, visit the Lullaby Trust’s website here: https://www.lullabytrust.org.uk/

On 15 October at 7pm, we will be joining other organisations in the Wave of Light event, to show our support and dedication to those dealing with bereavement. 

You can also follow our Trust on Twitter @HumberNHSFT and engage with spreading the word this Baby Loss Awareness Week using the hashtag #WaveofLight

Finally, learn more about the week and the Wave of Light, here: https://bit.ly/3BjqEvn