CASE STUDY BABY 1

Parents were referred to Ty Gobaith from the tertiary foetal medicine centre after the 20 week anomaly scan when it was confirmed that their unborn baby had a very complex heart condition.

They were supported throughout the remainder of the pregnancy at appointments, getting to know the family and understand their wishes, all the while hoping for the best outcome but preparing for the worst.

Following baby’s birth, we attended the hospital to support to parents. He required respiratory support and numerous life sustaining drugs during this period of time.

The medical team confirmed that the baby’s condition was so complex that there were no surgical procedures which could offer any chance of life.

We had already discussed their wishes for this devastating scenario, and their thoughts had not changed. They wanted to bring their baby to Ty Gobaith for end of life care.

Working collaboratively with the hospital, it was arranged for Baby 1 and family to be transferred to Ty Gobaith where his extended family were able to come and meet him for the first time and spend some time all together as a family.

Baby 1 lived for a day at Ty Gobaith, where he spent the time in a home from home environment with his parents, which they described as giving them the opportunity to feel like a real family if only for a short while.

Case study Baby 2

Baby 2 was born at term, with no known antenatal concerns.

Following delivery, it was clear then Baby 2 had some significant life-limiting problems. We met with the family and the parents were introduced to the idea of hospice support. His parents were very scared about taking him home, and it was arranged for them to come to Tŷ Gobaith form the hospital for ‘stepdown’ care and spend some time caring for the baby but also feeling supported by the care team as much or as little as they needed. After a few days they felt confident enough to take baby 2 home with the support available to them in the community.

Sadly, after several months, the baby’s condition suddenly deteriorated requiring admission to a tertiary centre where, despite receiving all the care, baby 2 was unable to recover from this illness and died in hospital. The parents had wanted to bring baby 2 to Ty Gobaith for end of life care but this was not possible due to the rapid deterioration and instability of his condition.

However, following baby 2’s death, his parents requested they bring him to Tẏ Gobaith to spend some time there. This required collaborative working between hospital, Tẏ Gobaith and community to ensure the smooth transition from hospital to hospice. Once in Tẏ Gobaith, the family were able to spend time in a homely environment with extended family around them. They stayed for a few further days with baby 2 using the cool cot, which gave them time to say their final goodbyes, whilst preparing for his funeral and receiving both practical and emotional support. The family accessed regular bereavement support and counselling following baby 2’s death. They now support Ty Gobaith with regular fundraising and attendance at events.