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Reflections on Palliative Care for Babies and their Families

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As part of Baby Loss Awareness Week (9-15 October), Kathryn Chandler-Board shares how her role as a Neonatal Link Sister at Haven House Children’s Hospice is helping families caring for seriously ill babies to have greater choice in their baby’s care & time to create special memories.

Through my 20-year career as a neonatal intensive care nurse based in NHS hospitals, I became passionate about wanting to improve services for babies and their families requiring palliative care. In my experience, there was little choice for these families who are facing the unthinkable.

Since I started a new role at Haven House Children’s Hospice in September 2015, I have been able to build relationships and work in partnership with the Neonatal Units within Central and North East London. I have been involved in delivering training to Doctors and Nurses on the neonatal units, specifically around identifying babies with palliative care needs as well as educating them on the variety of services the hospice provides for these families, allowing referrals to be made sooner and easier.

Once a referral is made, I meet with the family as soon as possible and invite them for a hospice visit, empowering them to have more choice around their baby’s care and to feel in control. The types of support we offer is step-down care to home, which allows the parents to learn the skills they require in order to care for their baby with complex needs, in a less clinical environment like a home from home, with the support of nursing staff if they need. There is ongoing support once they are home with respite care, hospice to home and music therapy. We also provide end of life care in our Butterfly Suite including compassionate extubation with the support of neonatal, palliative and transport teams.

The introduction of my role has encouraged ante-natal referrals, allowing the families to parallel plan and ensure they get the opportunity to spend precious time with their baby. I sometimes attend ante-natal appointments with the families and support with the development of the birth plans.

The hospice continues to support these families, with counselling, sibling support and Memory Day, an annual celebration of all the children that have died.

Our goal is to give families choice. We know the hospice won’t be everybody’s choice, but that’s fine. I want to make sure they have all the information to make the right choice for their baby, family and circumstances.

Hopefully, the sentiments expressed in the letter below will become standard for those in such distressing times. The role the hospice has played in helping that to happen gives me great pride.

Extract from parent’s letter:

During the absolute worst time in our lives, you helped to make things bearable. In fact, they were much better than bearable – you helped us to enjoy every precious second with our beautiful boy and allowed us to create the most special and precious memories, that give us such comfort now.

Kathryn Chandler-Board is Neonatal Link Sister at Haven House Children’s Hospice.

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