Support: Next Infant Support Programme (NISP)
Next Infant Support Programme
You’re having a baby!
Having a baby is an exciting but nerve-wracking experience for any parent – but when you also have a family history of a baby or young child dying suddenly and unexpectedly, it can be an even more anxious time for you and your family.
What is the Next Infant Support Programme (NISP)?
The Scottish Cot Death Trust has developed a Next Infant Support Programme (NISP) specifically to help bereaved families, such as yours who have experienced the sudden and unexpected death of a baby or young child. This enhanced support service is to help you throughout your pregnancy and after the birth of a new baby. The purpose of NISP is to provide you with as much help and support as you need to make your new pregnancy as safe and enjoyable as possible and to help you enjoy those precious days of parenthood after a new baby is born. Our aim is to provide reassurance and to offer practical advice and support at times you may need it.
Through the NISP we can support you emotionally and practically to enable you to cope with the emotions and anxieties you may, naturally, experience when you have another baby.
Am I eligible for the Next Infant Support Programme?
If you are expecting a baby and have a personal history of cot death, you may be eligible to access the Next Infant Support Programme. If you or your partner meet any of the following criteria please either contact us or complete the registration form:
- If you or your partner have previously lost a child to a sudden unexpected death in infancy (or childhood)
- If you or your partner have previously lost a brother or sister (including half-brothers/sisters) to a sudden unexpected death in infancy (or childhood)
If you don’t meet any of the above criteria, you should contact the Scottish Cot Death Trust before you complete your application form to discuss your personal situation.
The Next Infant Support Programme is provided free of charge to you and includes:
- Support from a dedicated support worker during your pregnancy and after the birth of your baby
- Provision of an Apnoea (breathing) Monitor for your new baby.
- Resuscitation training for you and your family in your own home, where possible
- Contact with other parents in a similar situation
Once we receive your request to enrol on the Next Infant Support Programme, we will contact you to make arrangements for our Community based support worker to visit you. They will offer support to you throughout your pregnancy to help you deal with your emotions and anxieties.
When you are 32 – 36 weeks pregnant we will make arrangements for you and your key family members to have resuscitation training. This is provided in your own home. This training helps to prepare you for some of the more common emergency situations. Two different training scenarios can be covered – one using an infant mannequin and one without. We understand that some family members may not feel ready to cope with seeing a mannequin used for resuscitation training.
You may find the resuscitation training difficult to face. However, many parents have told us that they find it quite empowering and that they prefer to have the training before their new baby is born, rather than afterwards. If you would prefer to wait until your baby is born to have the resuscitation training, this can be arranged for you in hospital.
Sadly, we know from experience that when a baby or young child has suffered a sudden unexpected death in infancy, resuscitation is unlikely to be successful. The resuscitation training forms a vitally important part of the Next Infant Support Programme as in most situations if a baby or young child is found unresponsive, the cause is not likely to be a SUDI.
Tanishaa – 11 weeks
…Click, click… (I hold my breath and wait) …click-click… (I sigh with relief) …click, click… the apnoea monitor I borrowed from the Scottish Cot Death Trust gives me a reassurance I didn’t think was possible after Baby Tanishaa died. The clicking sounds like a bird pecking or a tap dripping ….
Apnoea Monitor loan
An apnoea (or breathing) monitor is one of the most practical aspects of the Next Infant Support Programme. These monitors are used to detect the baby’s breathing and will sound an alarm if the baby stops breathing. The monitor produces an audible “click” every time the baby breathes and parents often tell us that it is hearing the “click” that gives them the peace of mind they need to enable them to go to sleep at night.
When you are 32-36 weeks pregnant, we will arrange for your apnoea monitor to be delivered to you. You will be shown how to use it and you will need to bring it with you to the hospital when you go in to have your baby. As soon as your baby is born, the monitor can be attached and will offer peace of mind for you from the moment they are born.
Once you have been shown how your apnoea monitor works, you will also be provided with a video link so that you can watch in your own time the different functions of your monitor.
A room thermometer
Babies can overheat because of too much bedding or clothing, or because the room is too hot. As part of the Next Infant Support Programme we will provide you with a room thermometer to help you keep the baby’s room temperature at about 18ºC (65ºF).
Contact with other bereaved parents
We may be able to arrange for you to have contact with other parents whose baby died suddenly and unexpectedly and who went on to have another baby. You are likely to have questions such as they once did. They will understand your anxieties better than anyone.
The Scottish Cot Death Trust offers professional counselling to anyone affected by cot death. This service is also available to you and can be discussed with you when you enrol on the Next Infant Support Programme. The same pool of counsellors is used for the Next Infant Support Programme as for bereaved family members. If you have linked with a counsellor previously you may want to see the same counsellor again. We will try to accommodate this if at all possible. If you have never accessed counselling before, have a look at how a referral to this service works.
Support after your baby is born
When you have enrolled on the Next Infant Support Programme the Scottish Cot Death Trust’s community support worker will make contact with you at 6 weeks, 6 months and 10 months to offer support. If you require any additional support during this time they will ensure that this is available to you, however, our focus is on being in the background but available – your time with your new baby should not be a reminder of the past but a time to look forward.
Informing us of any changes during your pregnancy
If, during your pregnancy, anything changes – you should make contact with us as soon as possible. These changes could be as a simple as moving house or changing to a new GP. It is important that you advise us of these changes so that we can ensure your support and Apnoea Monitor are delivered to you in time.
Sadly, sometimes pregnancies don’t always go to plan and if you suffer a miscarriage; or if some other health issue is detected, please let us know as soon as possible. This will help to ensure that we don’t contact you, as planned at 32 weeks and add further to your distress.
How do I register for the NISP?
You can enroll on the Next Infant Support Programme in two ways.
- At your “booking-in” appointment at the ante-natal clinic, you should discuss your family history of cot death. You can register online on our website. Simply complete the NISP registration form. You will need to give your permission for the Scottish Cot Death Trust to contact your Midwife and/or GP to confirm that you are pregnant and to verify your family history of SUDI.
Your Midwife will need to confirm with us that you are pregnant and to verify your family history of cot death. We need you to register at least by the 28th week of your pregnancy. The sooner you return the form to us, the quicker you can have access to specialist support throughout your pregnancy.
- Alternatively your Midwife may also have a paper “Next Infant Support Programme” referral form. We still accept this via post.