Hospice Care: Breaking Barriers

Have you been offered hospice care for your baby? If so, you might be wondering what this actually means for you and your family. The word “hospice” can feel overwhelming at first. Many people immediately associate hospice care with end of life, and it’s completely natural for fears and questions to surface when this support is mentioned.

But hospice care is so much more than end-of-life care. For families facing a Trisomy 13 or 18 diagnosis, hospice support can begin early, even during pregnancy and can continue for as long as a family needs it. Hospice care is about enhancing quality of life, offering comfort, creating precious memories, and surrounding families with practical and emotional support.

This might look like planned respite care so parents can rest, dedicated play support for siblings, help navigating hospital appointments, symptom management, counselling, or simply a safe space where families feel understood and never alone. Hospice teams walk alongside families through complex journeys, offering steady, compassionate support every step of the way.

At Soft UK, we know that understanding hospice support can feel daunting at first. So, to help break down the barriers. we’re delighted to introduce our new Professional Advisor, Sara Balmforth, a Perinatal Midwife at Forget Me Not Children’s Hospice, who shares her insight into what hospice care truly means for families.

Here’s what Sara has to say.

Hospice teams support both parents and babies — emotionally and practically. This may include help with writing a birth plan that puts the family and baby at the centre, alongside support with comfort and symptom management if needed. Hospices also provide space to talk through worries, support with memory‑making, and care for the whole family, including siblings. For many families, hospice care offers continuity, compassion, and someone to walk alongside them, whatever happens.

A common misconception is that hospice care is only about end‑of‑life. Families who have experienced hospice care often describe something very different — a place of kindness, calm, and genuine support. Some babies live longer than expected, some families use hospice services only for emotional support, and others value having an additional layer of care. Hospice support is flexible and adapts to each family’s unique journey.

Choosing hospice support does not replace medical care or take away options. Families can still hope, plan, change their minds, and make decisions at their own pace. Hospice care is about adding support, not limiting treatment or future choices.

Accepting hospice care does not mean giving up. Instead, it is a positive step that helps connect services together and provides continuity at a time when this support can feel especially important.