All parents and carers of young babies worry about the possibility of Sudden Infant Death Syndrome (SIDS). And, when it comes to having another baby, parents who’ve already suffered the devastation that the unexpected death of an infant brings are often overwhelmed with anxiety and fear.
The Care of the Next Infant (CONI) scheme provides specialist support, information and advice to bereaved parents who’ve lost an infant to SIDS during their next pregnancy and for the first six months of their new baby’s life.
The CONI scheme also provides specialist support and advice to other health professionals working with bereaved families who are expecting another baby.
In Leicester, Leicestershire and Rutland, Leicestershire Partnership NHS Trust, University Hospitals of Leicester (UHL) and the City and County Councils’ public health teams work together in partnership with the Lullaby Trust to deliver the CONI programme.
The referral process
Referrals are usually made by the midwife at initial booking of pregnancy, but can also be made by public health nurses (health visitor), GPs, other health professionals and by the parents themselves. Referrals can be made by calling the Diana Service on 0116 2955080.
What the scheme offers
A named CONI coordinator will work alongside the public health nurse (health visitor) to care for a family. As part of the scheme, weekly clinic contacts will be offered for up to six months or for two months after the age of the baby who died. After six months, contacts will be offered on a monthly basis up to the age of one year. The CONI coordinator will also liaise with the family’s GP, informing them of enrolment onto the CONI scheme.
Parents will also be given:
- A daily symptom diary which they can use to record their baby’s health. It contains a simple checklist designed to help parents notice any changes so that they can seek appropriate advice and support from health professionals where necessary.
- A baby check booklet which can be used on its own, or alongside the daily symptom diary to assess signs and symptoms in a baby.
- A room thermometer and guidance on safer sleep products, bedding, clothing and smoke free environments.
- A Sheffield weight chart to plot their baby’s weight on a weekly basis. That way, unusually slow weight gain (which can be associated with ill health) can be picked up at an early stage.
- Resuscitation training.
- A movement/apnoea monitor designed to detect a baby’s movements as they breathe. An alarms sounds after 20 seconds if breathing movements stop, thereby alerting parents. Many parents say using a monitor, particularly at night, helps them feel reassured.
At the end of the scheme, families are invited to complete a feedback questionnaire.
- Safer sleep advice for babies
- Lullaby Trust – Bereavement helpline: 0808 8026868 and Baby Check app
- Little Lullaby – Website for young parents
- The Laura Centre – Specialist bereavement counselling
- Cruse Bereavement Care – Helpline: 0808 8081677
- University Hospitals of Leicester Bereavement Support Service: email or call 0116 2584380 / 07950 868337
Leicestershire Partnership NHS Trust runs a confidential secure text messaging service for parents of children aged 0-19 years called Chat Health. The service operates Monday to Friday between 9am and 5pm, excluding bank holidays. All texts will be responded to by a public health nurse (health visitor/school nurse) within 24 hours. Outside of the service working hours, you’ll receive a message back to inform you that your text will be responded to once the line reopens.
Should you require urgent health advice in the meantime, please contact your GP, visit an NHS walk-in centre or call NHS 111. For emergencies, dial 999 or visit A&E.
Leicester City: text 07520 615381
Leicestershire & Rutland: text 07520 615382