Fetal Cardiology Services at Leeds Teaching Hospitals NHS Trust

Fetal Cardiology Services at Leeds Teaching Hospitals NHS Trust Currently the Fetal Cardiology department at Leeds Teaching Hospitals NHS Trust comprises:

. Fetal Cardiology Consultant (Lead for service 4.5 sessions per week), . 2nd Fetal Cardiology Consultant (1 session per week) . Team of Sonographers- including a Consultant Sonographer further highly specialised Sonographers and those in training . 3 Cardiac Liaison nurses sharing the role . Paediatric Cardiothoracic Surgeon . Clerical support The Department is recognised for subspeciality training in Fetal Cardiology and currently has a nationally appointed final year trainee.

We currently receive referrals from GP, Midwives, DGH Obstetrics as Tertiary Fetal medicine Units (Leeds and Sheffield) to Consultant led clinics.

After being seen in the Fetal Cardiology clinic the patients are managed in the following way

1. Normal Fetal Cardiology review- referred back to DGH Obstetrics/midwife/GP for normal pregnancy management. 2. Abnormal Fetal Cardiology review (not structural abnormality) e.g. Fetal ectopic beats- referred back to DGH Obstetrics/midwife/GP surveillance/management of specific problem. 3. Abnormal Fetal Cardiology review (structural abnormality) – referred to Fetal Medicine (Leeds/Sheffield) for further investigation and management. Also can be referred back to DGH Obstetrics. When severe CHD is diagnosed in the fetus, one or more further appointments are made in Fetal Cardiology clinic to assess the progression of the abnormality and also to plan delivery. The option is given to the patient to meet with a Cardiothoracic surgeon.

Delivery of Fetuses with Congenital heart disease after antenatal diagnosis made The aim is to deliver babies in Leeds where it is felt that outcome would be improved from urgent Paediatric Cardiology assessment. Decision should be made on a case by case basis

New Developments within Leeds Fetal Service

Role of the Liaison Nurse As part of appointment of Paediatric Cardiologist with clinical lead for Fetal Cardiology the role of the Cardiac Liaison nurse has been developed further. With increased activity, the Fetal clinics have now increased in frequency.

Role of the nurse in clinic . Support the Consultant in providing relevant information related to the cardiac diagnosis, and written information to support this . Provide the patient and family with information regarding support groups, contact details of the Nurse Specialist service for follow-up support . Counsels and supports families following a Fetal diagnosis Role of the nurse between clinics

. Be available as point of contact for families . Provide patients with follow-up telephone call to support the family following diagnosis and answer any further questions . Prepare the family for admission to the cardiac ward or neonatal unit . Liaise with obstetric units/midwifery departments, to encourage two-way communication and assist families in decision making re. continuing with pregnancy . Information for families re TOP/Feticide if necessary and post TOP support groups . Post TOP/IUD/Delivery counselling . Be part of Surgical/Fetal clinic . Liaise with local Paeds or NNU/Neonatologists re impending deliveries Development of role to assist in developing the service

. To assist in data collection to provide up to date information re. the progress of the pregnancy, to enable the team to plan services . To assist in developing a Fetal Cardiac Network within obstetric services in the District General Hospitals . Teaching programme for midwives re. congenital heart disease . Follow up and outcome data once delivered . Produce written information leaflets tailor made to Fetal Cardiology Service Cardiac Surgical Fetal Clinic Have developed joint service with Congenital Cardiothoracic Surgeon. Opportunity for families with a fetus diagnosed with CHD to discuss surgical options prior to delivery. Once baby delivered parents may be on different sites. Opportunity to anticipate and plan management. Anticipated deliveries discussed in Departmental MDT to anticipate workload within busy department

Improving the antenatal detection rate of CHD An extensive education programme for Sonographers was carried out by Consultant Fetal Cardiologist and Consultant Sonographer throughout the Yorks and Humber region in 2011. This was funded and supported by The Fetal Anomaly Screening Programme (FASP). 4 half day sessions were delivered providing the background and theoretical knowledge behind Fetal Cardiac scanning and then practical sessions were delivered in all the hospitals within the region taking up the training. 241 staff were identified in the Yorkshire and Humber region undertaking Fetal Cardiac scanning as part of their day to day practice. 227 of them (94%) attended the half day theory session and 233 (96.7%) accessed and 201 (83.8%) completed a modified online Fetal Cardiac training module produced by FASP. 209 (86.7%) of sonographers attended a practical session although the numbers did increase with a mop up session later in the year. The overall evaluation for the online resource, lecture based sessions and hands on practical training was a mean of 4.6/5.

Implication for Fetal cardiology service Suspicion of Congenital heart disease by Sonographers will increase the numbers of patients with a definitive diagnosis made antenatally.

There is clear evidence of benefit of antenatally diagnosed transposition of the great arteries with statistically significant improvement in preoperative and postoperative morbidity and mortality. (Bonnet et al 1999) The literature also supports benefits of antenatal diagnosis in hypoplastic left heart syndrome; improved hospital survival, less significant metabolic acidosis and fewer adverse perioperative neurological events within 6 wks of surgery. (Chang 1991, Tworetsky 2001, Mahle 2001). Benefits have also been shown more generally with antenatal diagnosis of congenital heart disease showing significant prevention of abnormalities of acid-base balance (Verheijen 2001)

Aside from clinical issues, there are significant benefits for the families, to understand and anticipate diagnosis, allow for counselling and the opportunity to meet surgeons and discuss surgery. There is a documented improvement of psychological impact on the parents when congenital heart disease is diagnosed antenatally. (Sklanksy 2002)

There is also benefit to the Paediatric Cardiology department; to be able to plan for expected deliveries, anticipate workload and imminent surgery, improved transition Obstetrics-Neonates-Paed Cardiology, improved handover.