Family Support
CHI doesn’t exist in isolation.
Behind every diagnosis, complicated pregnancy, NICU admission or baby loss is a person and a family trying to make sense of something they never expected to face.
KSB wants to create a space where families can find information, understanding and connection — particularly for those who may feel like they are navigating everything on their own.
We recognise that grief can be complicated. You may be grieving your baby while also recovering physically from birth. You may be trying to understand medical results, post-mortem reports or placental findings. You may be planning a funeral while still processing what has happened. You may be returning home to an empty nursery. You may be doing all of this without the village you thought you would have.
When grief comes with a list of things to do
The loss of a baby can bring with it an overwhelming number of decisions at a time when you are simply trying to process what has happened.
You may suddenly find yourself having conversations about post-mortems, medical investigations or organ donation. You may be asked to make decisions about your baby’s funeral or burial. You may be trying to understand medical terminology, test results and reports while also trying to grieve.
There is no handbook for any of this.
And once the hospital appointments end and everyone else goes back to their lives, the grief doesn’t simply disappear.
You still have to go home.
You still have to wake up the next morning.
You still have to figure out how to live alongside the loss of your baby.
What if you don’t have a village?
Not everyone experiences bereavement surrounded by family and friends.
What if you’re a single parent?
What if you’re estranged from your family?
What if your relationship has broken down?
What if the people you thought would be there aren’t?
Or what if, despite having people around you, you still feel completely alone in your grief?
KSB aims to provide accessible resources and signposting for families navigating these experiences.
As the foundation develops, we hope to build more direct forms of family support, including peer connection, practical resources and spaces where people affected by CHI and baby loss can feel less alone.
There is no right way to grieve, and no family should have to navigate it without support.
KSB recognises that bereavement can be isolating, and that the support someone has around them can look very different from one family to another.
Organisations such as Sands provide bereavement support, helplines, peer groups and practical information for families following pregnancy and baby loss. Their resources also recognise the difficult decisions families may face around funerals, post-mortems and future pregnancies.
KSB’s role is not to replace these organisations. It is to help families find them — and to create a space specifically informed by the experience of CHI and the questions that can follow it.
A place to start
Sometimes you don’t know exactly what you need.
You might just know that you need someone to understand.
KSB aims to help families find somewhere to start — whether that means understanding a CHI diagnosis, finding bereavement support, learning about available resources, connecting with others who have experienced baby loss, or finding information to take back to their healthcare team.
As KSB grows, we hope to develop more direct support for families, including practical resources, peer connection and dedicated information for people affected by CHI.
We also want to recognise that grief doesn’t have a deadline.
Support may be needed in the first days and weeks after a loss, but it can also be needed months or years later. Sands, for example, provides support to people whose babies died recently as well as those who have been bereaved many years ago.
You don’t have to know what you need before you reach out.
If you’re unsure where to turn, KSB can help you find a place to start.
We may not have every answer, but we want to help you find the right one.
