Working Life: A congenital heart disease diagnosis is traumatising for the whole family

Sheila Campbell, CEO of Heart Children

Sheila Campbell, CEO of the charity Heart Children. Photograph Moya Niolan

6.30am

My four adult children have flown the nest, so my new ‘dog-child’ is Pip, a cockapoo, who needs a walk before I leave home in Greystones for Dublin’s Smithfield. The commute is a bit of a trek, but I can work from home two days a week.

9am

At the office, I run through email requests from members enquiring about various services with our fundraising executive, Niamh Kearney. For instance, we fund 14 sessions of play therapy for kids with congenital heart disease (CHD) and their siblings, as a diagnosis is traumatising for the whole family. The service is on-demand, and we try to match families with local play therapists.

10am

We process a request for psychological support from a family dealing with a CHD diagnosis. Our clinical psychologist Dr Claire Conlon is available nationwide, free of charge, over Zoom or by phone.

11am

We log on to an online meeting as co-chair of the family engagement group, a sub-committee of the All Island Congenital Heart Disease Network, which provides paediatric surgical care for children, north and south of the border, at CHI Crumlin. Our subgroup, which includes patients’ representatives, nursing staff and allied health professionals from both jurisdictions, provides feedback to the Network on issues that arise for families using the Network’s services.

1pm

Sandwich in Smithfield.

2pm

I make arrangements for payment of a grant to a family taking their child abroad for treatment unavailable here. We make direct payments to families to help with the cost of things like travel and accommodation.

4pm

Our charity works closely with the Children’s Heart Centre, CHI Ireland (Crumlin) and the Adult CHD unit in the Mater Hospital, Dublin. Today, I’m meeting representatives from both units — Rhona Savage at the Mater and Yvonne Leonard in Crumlin — to plan our upcoming annual conference, ‘The Beat Goes On’, which will focus on adolescents and adults with CHD. The resources for adults with CHD have been severely neglected, and we need increased spending.

5.30pm

Home to Pip and my husband Seán in Greystones, Co Wicklow.

• As part of Global Congenital Heart Disease Awareness (CHD) Month, Heart Children will host its annual conference, The Beat Goes On, in Dublin on Saturday, February 22. 
• Aimed at young people and adults with CHD and their parents, registration is free at www.heartchildren.ie or by phoning 01 8740990.