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SC BROWN PAEDIATRIC CARDIOLOGY UFS Introduction congenital heart disease - lifelong care ○ frequency 1% - USA: 2.9mil pa - Netherlands 20 000 GUCH – only 8000 seen - SA: 47million = 470 000 challenges: ○ best location ○ appropriate antenatal care ○ securing infrastructure 3 most common problems neglected patient weak infrastructure family planning & management of pregnancy neglected patient lost to follow up non education ○ patient ○ families adult physicians: no idea SOLUTIONS ○ educate patient & families ○ orderly transfer infrastructure more survivors of CHD few clinics for GUCH ○ no experience ○ shortage of skilled personnel no orderly way of training multidisciplinary approach contraception & pregnancy GUCH – 50% female problems ○ contraceptive options ○ cardiac risks conditions in which pregnancy risk is WHO 4 * Pulmonary arterial hypertension of any cause * Severe systemic ventricular dysfunction NYHA III–IV or LVEF ≤ 30% * Previous peripartum cardiomyopathy with any residual impairment of left ventricular function * Severe left heart obstruction * Marfan syndrome with aorta dilated > 40 mm LVEF, left ventricular ejection fraction; NYHA, New York Heart Association Heart 2006;92:1520-25 GUCH: Facts & figures age distribution (Florida) Single ventricle 5% PFO Ebstein 2% Diagnosis TGA 9% PuV 8% 2% CoA 5% Tet 21% AVSD 5% ASD 9% AoV 9% other 12% VSD 8% TA 5% number of re-operations Problems in GUCH ventricular function ○ poor imaging arrhythmias ○ SVT ○ early electrical cardioversion cyanosis policythaemia – phlebotomy (hct > 65) haemostasis renal function gallstones orthopaedic pulmonary vascular disease ○ irreversible & progressive disease pregnancy ○ Eisenmenger > 50% mortality risk (after delivery) ○ cyanotic CHD – 12% successful pregnancy genetic counselling ○ 2 – 50% risk if mother CHD comorbidity ○ 15 – 20% chromosomal abnormalities endocarditis psychosocial ○ anxiety ○ depression employment surgical issues planning specific challenges preservation myocardial function blood salvage techniques ○ autologous transfusion ○ pre-op phlebotomy in cyanotic patients ○ routinely cell saver system intraoperatively redo sternotomy ○ difficult ○ consider cannulation of femoral vessels, bypass before opening sternum aortopulmonary collaterals ○ complicate peri- 7 post operative management ○ excessive return LA: - obscures visualisation, volume overlaod etc anaesthesia Case example 31y female Tricuspid Atresia Fontan @ 6y 29y: atrial flutter – cv disability pension exercise intolerance & ascites referred – transplant liver & heart by physician RAPA Fontan extracardiac conduit + Maze great improvement in quality of life • physician initial care did not understand Fontan circulation & complexity • patient + family did not appreciate the need for expert care or where to find it reasons for inappropriate care adults CHD lost to follow-up patients & families not educated ○ what to expect ○ where to go adult physicians not educated re complexity of GUCH NEED network of specialist centers team of experts ○ nurses – physicians training recommendations unit located adult environment with multidisciplinary provision associated with strong paediatric cardiology group each center to serve 5-10million population referral relationships with primary caregivers association with transplant centre medical expertise Cardiologist – paed + adult Electro physiologist MRI, CT Minimum 2 congenital heart surgeons Obstetrics for high risk pregnancies Specialist nurses European Heart J 2003. 24:1035-84 Why the sharks win Why the sharks win Why the sharks win And the BULLS ?