The care provided for your baby should be based on their individual needs and condition at the time the decisions are being made. Parents' wishes are very important at this stage. Families feel very differently about what intervention and care is right for their baby. Some families do not wish medical intervention for their child. Some families choose to have enough intervention to keep the baby comfortable and to feed the baby, but do not wish further procedures or surgery. This is sometimes called 'comfort care'. Some families may pursue active medical intervention of all kinds for their babies. If a baby is very poorly, families may choose palliative care to help care for the baby until the end of life. Choices for a baby's care are very personal and can be affected by a huge range of factors, particularly the baby's own health. Families should feel comfortable to make the choices that are right for their baby and their family and not feel pressured into making choices they are not comfortable with.
Medical professionals should keep the family informed at all times. It is important to ask questions when you feel you have them, no question is silly or pointless! Keep a list of your questions as they arise, so that when you meet with staff, you remember everything and can write down the answers. Professionals should take time to explain things to you. This may be your consultant, nurse or a support professional within the unit.
It can be helpful to write down your wishes for your baby, to lessen the chance of misunderstanding between families and professionals.
Making choices for your baby can be very difficult and create feelings of being overwhelmed, stressed or sad. It is important to seek support if it becomes overwhelming for you. Many hospitals provide support services to families with very ill children. BLISS provide support to families in neonatal units and SOFT UK Support is available to families caring for a baby with a Trisomy condition.
Additionally, children's hospices can offer valuable support during this challenging time. In the UK, there are several children's hospice associations that specialize in providing care and support for children with life-limiting conditions and their families. These organizations offer a range of services to ensure that children and their families receive physical, emotional, and practical support. Here are a few examples:
Together for Short Lives: Together for Short Lives is the leading UK charity for children with life-limiting conditions. They work with children's hospices and other organizations to ensure that every child and young person receives the best possible care and support. Their website provides information, resources, and a directory of children's hospices across the UK. You can find more information on their website: https://www.togetherforshortlives.org.uk/
Acorns Children's Hospice: Acorns Children's Hospice operates three hospices in Birmingham, Walsall, and Worcester. They provide a wide range of services, including respite care, emergency care, end-of-life care, and family support. Their goal is to enhance the quality of life for children and young people with life-limiting conditions. More information can be found on their website: https://www.acorns.org.uk/
Naomi House & Jacksplace: Naomi House & Jacksplace is a hospice charity that offers expert care and support to children and young adults with life-limiting and life-threatening conditions. They provide respite care, symptom management, end-of-life care, and bereavement support. They have hospice facilities in Hampshire and offer support services to families across the UK. You can learn more on their website: https://www.naomihouse.org.uk/
Haven House Children's Hospice: Haven House Children's Hospice is located in Woodford Green, East London. They provide a range of services for children with life-limiting conditions, including planned respite care, end-of-life care, and support for the whole family. Their aim is to help children and families make the most of the time they have together. More information can be found on their website: https://www.havenhouse.org.uk/
The Scottish Association for Children with Life-Limiting Conditions (https://www.chas.org.uk/) With a history spanning three decades, CHAS is dedicated to providing comprehensive family support services for babies, children, and young people with life-shortening conditions in Scotland.
Northern Ireland Children’s Hospice: (https://www.nihospice.org/) is a charity delivering symptom management, end-of-life palliative care, specialist rehabilitation and respite care. Their hospice care services both in the community and in their buildings provide high quality, person-centred care. They support and care for babies, children and adults who are adjusting to life living with life-limiting and life-threatening conditions, up to their death and into family bereavement support.
These are just a few examples of children's hospice associations in the UK. Each organization may have its own unique range of services, so please ask your health care professionals which hospices are associated with your hospital or visit the respective websites for more detailed information and to explore other children's hospice associations in your specific region or area of interest.