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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.

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