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Adult Congenital Heart Disease with Focus on Pregnancy

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Adult Congenital Heart Disease with Focus on Pregnancy Adult Congenital Heart Disease with Focus on Pregnancy Pauline Titia Elisabeth Ruys ISBN: 978-94-6169-403-4 Adult Congenital Heart Disease with Focus on Pregnancy Pauline Titia Elisabeth Ruys, [email protected] Aquarel: Caren van Herwaarden: “Een wetenschapper werkt naar een uitkomst en zoekt wegen daarnaar toe, een kunstenaar volgt een weg zonder te weten waar die naar leidt. “ www.cvanherwaarden.com Vormgeving: Ruud Willems [email protected] Gedicht Herman de Coninck: In Herman de Coninck “De Gedichten” Uitgeverij de Arbeiderspers Amsterdam Antwerpen ISBN 9029509481 Gedicht Wislawa Szymborska: Fragment uit: de vreugde van het schrijven, In “Einde en begin verzamelde gedichten” Wislawa szymborska, Vertaling Gerard Rasch, Meulenhoff, Amsterdam ISBN 9029088303 Opmaak: Optima Grafische Communicatie, Rotterdam, The Netherlands © Pauline Titia Elisabeth Ruys. All rights reserved. No part of this publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system, without the prior written permission of the author. Some of the chapters are based on published manuscripts, which were reproduced with permission of the co-authors and the publishers. Adult Congenital Heart Disease with Focus on Pregnancy Volwassenen met een aangeboren hartafwijking met speciale aandacht voor zwangerschap Proefschrift ter verkrijging van de graad van doctor aan de Erasmus Universiteit Rotterdam op gezag van Rector Magnificus Prof.dr. H.G. Schmidt en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op vrijdag 13 september 2013 om 13:30 uur door Pauline Titia Elisabeth Ruys geboren te Den Haag PRomoTiE commissiE Promotor Prof.dr. J.W. Roos-Hesselink overige leden Prof.dr. F. Zijlstra Prof.dr. J.J.M. Takkenberg Prof.dr. M.R. Johnson Dit proefschrift werd mede mogelijk gemaakt door de Nederlandse Hartstichting en de Erasmus Universiteit. LEgEnd A. introduction 9 1. Introduction 11 B. Part i Adult congenital heart disease 21 2. Long-term outcome and quality of life after arterial switch operation. A 23 prospective study with a historical comparison. (Published in Congenit Heart Dis. 2013 Jan 28) 3. Long-term outcome of surgery for tetralogy of Fallot: comparison between 39 two historical cohorts. (Submitted) 4. Long-term psychosocial outcome of adults with complex congenital heart 55 disease: a historical comparison. (Accepted Cardiol Young 2013 Feb 22) c. Part ii Pregnancy in women with heart disease 77 5. Pregnancy and delivery in cardiac disease. (Published in J Cardiol. 2013 79 Feb;61(2)) 6. Hemodynamic adaptation to pregnancy in women with structural heart 95 disease. (Published in Int J Cardiol. 2012 Nov 11. pii: S0167-5273(12)01379- 4.) 7. Pregnancy in congenital heart disease: prospective validation and assess- 113 ment of cardiovascular and offspring risk. (Submitted) 8. Outcome of pregnancy in patients with structural or ischemic heart disease: 129 results of a registry of the European Society of Cardiology. (Published in Eur Heart J. 2013 Mar;34(9):657-65.) 9. Mode of delivery for patients with heart disease. Observations from the 149 Registry On Pregnancy And Cardiac disease (ROPAC). (Submitted) 10. The impact of maternal cardiac medication on fetal outcome: data from the 165 ROPAC. (Submitted) 11. Heart failure in pregnant patients with cardiac disease: data from the 177 ROPAC. (Submitted) 12. Coronary Artery Disease and Pregnancy. (Published in Coronary Artery 193 Disease - Current Concepts in Epidemiology, Pathophysiology, Diagnostics and Treatment, Dr. David Gaze, ISBN: 978-953-51-0262-5, InTech) 13. A pregnant patient with native aortic coarctation and aneurysm, a case 219 report. (Submitted) d. Part III Children of women with heart disease 225 14. Growth in children of mothers with congenital heart disease. (Submitted) 227 E. discussion 241 15. Summary / Samenvatting 243 16. Future perspective 263 F. Additional information 273 Dit proefschrift werd mede mogelijk gemaakt door: MSD Servier Medical Nederland Boehringer Ingelheim Cardialysis “Nobody has ever measured, even poets, how much a heart can hold.” Zelda Fitzgerald A Chapter 1 Introduction Introduction 11 introducTion congenital heart disease The prevalence of Congenital Heart Disease (CHD) has been described to be 8,2 per 1000 live births in European countries.(1) Congenital heart disease is a collective term for a large num- ber of different diagnoses with different anatomical substrate, complexity and prognosis. The most common subtypes that we encounter are: ventricular septal defect (VSD 2.6 per 1000 live births), atrial septal defect (ASD 1.6 per 1000 live births), persistent arterial duct (PDA 0.9 per 1000 live births), pulmonary stenosis (PS 0.5 per 1000 live births), tetralogy of Fallot (TOF 0.3 per 1000 live births), coarctation of the aorta (0.3 per 1000 live births), transposition of the great arteries (TGA 0.3 per 1000 live births) and aortic stenosis (0.2 per 1000 live births).(1) Figure 1. Birth Prevalence of CHD SubtypesReported birth prevalence of the 8 most common CHD subtypes per continent. Distribution of subtypes within total CHD is mentioned as percentages above bars. AoS = aortic stenosis; ASD = atrial septal defect; Coarc = coarctation; PDA = patent ductus arteriosus; PS = pulmonary stenosis; TGA = transposition of the great arteries; TOF = tetralogy of Fallot; VSD = ventricular septal defect. Until the 1950’s survival was very poor, with half of the patients that needed treatment, dying in the first decade of live. First cardio-thoracic surgery consisted of shunts from the aorta to the pulmonary artery to improve oxygenation and thereby survival of patients. The first successful corrective surgery of a patient with tetralogy of Fallot was done in 1954 in Minne- sota.(2) Further advance of surgery was dependent of the development of cardiopulmonary bypass machines in the same time period. The first successful open heart procedure utilizing the heart lung machine was performed by John Gibbon on May 6, 1953 in Philadelphia.(3) Since then survival rate has dramatically improved and nowadays 95% of all congenital heart disease patients reach adulthood.(4) Corrective surgery can be performed even in the very Chapter 1 complex diagnoses, such as a univentricular heart. Besides improvements in cardiothoracic 12 surgery there have also been major advances in anaesthesia, intensive care and specialist (paediatric) cardiologic care. Consequently, even more patients with CHD reach adulthood, creating a completely new and steadily growing patient population: patients with grown-up congenital heart disease (GUCH).(5) First results of corrective surgery were very promising, with high survival rates and low complication rates in the fi rst decade of life. Surgeons and cardiologists felt early optimism, but late complications became apparent in the second and third decade of life. Late compli- cations include ventricular dysfunction, need for re-intervention, arrhythmias, heart failure and sudden death.(4) Surgical approaches have therefore been modifi ed over the years to try and decrease these late complications. For instance in patients with transposition of the great arteries fi rst an atrial switch operation was performed (Mustard or Senning procedure), which was later changed to an arterial switch procedure.(6) In the fi rst cohorts of patients operations were performed at a later age, for instance patients with tetralogy of Fallot were originally operated at the age of 4-10 years. Nowadays operations are performed at the age of 4 month and even some centres have tried and operated them earlier.(7) A B Figure 2. A Mustard operation B Arterial switch operation Patients care in adult congenital heart disease The type of care needed changes with patients growing up. Parents of the patients started to have questions related to participation in school and physical exercise, on work and sports. Determining safe levels of physical activity for children and adolescents with congenital heart disease is challenging. In the beginning both parents and doctors were very careful and restrictive. Evidence for making recommendations was limited and based on expert opinion and estimated risks of sudden cardiac death with activity. Nowadays, most jobs are Introduction 13 considered to be safe for most patients. Participation in sports and regular physical exercise have well documented beneficial effects on fitness, psychological well-being, confidence and social interaction as well as on the later risk of acquired cardiac disease. Counselling patients with question concerning sports include an appreciation of the type of energy expenditure involved in different sports and teaching of a method to enable the patient to limit his or her activities. The European guidelines advice to perform social exercise to a level of comfort, but not to attempt competitive sports in most situations.(8) Yet, still considerations are made per patient individually.(9) The way patients evaluate their health can be a major determining feature for their well being. Previously, poor as well as good subjective states of health have been reported in adults with congenital cardiac malformations. In a large cohort study of congenital heart disease patients were compared to healthy peers. This study showed that congenital heart disease patients felt more impaired in physical functioning. But these patients reported less problems with work or social activities as a result of emotional problems.(10) Pregnancy in congenital
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