Empowering young cardiac patients

The Maurice Neligan Congenital Heart Clinic was launched recently by Health Minister James Reilly at the Mater Hospital, Dublin. The voluntary support group Heart Children Ireland raised over e50,000, in conjunction with the Home Retail Group, to convert a former balcony off the cardiac ward in the Mater into a consultation area for teenagers and young adults who have recently transferred from Our Lady’s Children’s Hospital, Crumlin.

Named after one of Ireland’s most respected cardiac surgeons, and a leading surgeon in congenital heart disease the ‘Maurice Neligan Congenital Heart Clinic’ will now provide a space where the congenital heart nurse can consult with these patients in private, giving patients the option to drop in unannounced for a consultation if they have a concern or just want to talk.

Suzanne Treacy, chairperson of Heart Children Ireland, said they have a longstanding relationship with the paediatric cardiac ward in Our Lady’s, where the group has provided support in a variety of forms to the families of those living with CHD. 

“We now see on average 250 patients transferring from Crumlin to the Mater each year, which is a wonderful testament to the advancements that have been made in treatment in the last decade.”

Dr Kevin Walsh, consultant cardiologist at the Mater, said as a result of medical advances, adults with congenital heart disease are a rapidly expanding patient population.

“They have specific problems and needs, many of which are currently unmet. We are very grateful to Heart Children Ireland for funding a clinical resource room where patients and their carers can contact and meet our clinical nurse specialists. This support will help to empower them with information about their condition and help them to lead productive and fulfilling lives. When problems arise they will have a point of contact to allow them to access clinical services in a timely fashion.”

A non-government funded charity, Heart Children Ireland fully funded the first adult congenital heart nurse in the Mater in 2004 in order to provide support for teenagers and their families who had progressed from the paediatric cardiac unit in Crumlin.

The adult congenital heart disease (ACHD) service at the Mater is a national service providing specialist support to patients with complex congenital heart defects requiring lifelong care. 

Congenital heart disease accounts for the largest number of birth defects in Ireland, accounting for 1% of all live births per year. With improvements in surgery and intervention techniques, 95% of these children survive into adulthood. 

The adult service at the Mater Misericordiae University Hospital was set up in response to this need with 1,400 patients currently availing of it and approximately 250 new patients transferring each year. The service incorporates management of these patients for:

• Cardiac intervention
• Further cardiac surgery
• Heart failure
• Arrhythmias
• Transplantation
• Pregnancy care
• Risk stratification
• Lifestyle advice 
• Education. 

In addition, the service is a resource for other health professionals caring for these patients in other health settings nationwide. 

The ACHD team in the Mater comprises Kevin Walsh, consultant congenital cardiologist; consultant cardiothoracic surgeons Mark Redmond, Lars Nolke and Jonathan McGuiness; CNS Rhona Savage; CNS in congenital heart disease Esther Doran; and a wide variety of support staff.

Heart Children Ireland is a voluntary organisation which was founded in 1990 by a group of parents who met while their children, born with congenital heart disorders (CHD), were being treated in Crumlin. Heart Children Ireland now has two staff members who are committed to furthering the aims of the organisation. 

Heart Children Ireland was established to provide a support mechanism in Ireland for all who are affected by CHD. As well as providing practical support to those living with congenital heart disorders, Heart Children Ireland also establishes local support groups throughout the country, fundraises in order to purchase medical equipment, provides financial assistance to families in need, as well as arranging special events for children with CHD and their families.