Pediatr Transplantation 2015: 19: 82–86
© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Pediatric Transplantation DOI: 10.1111/petr.12399
New era of pediatric ventricular assist devices: Let us go to school Ozbaran M, Yagdi T, Engin C, Ulger Z, Ozbaran B, Kose S, Kacamak D, Engin Y. (2015) New era of pediatric ventricular assist devices: Let us go to school. Pediatr Transplant, 19: 82–86. DOI: 10.1111/petr. 12399.
Mustafa Ozbaran1, Tahir Yagdi1, Cagatay Engin1, Zulal Ulger2, Burcu Ozbaran3, Sezen Kose3, Duygu Kacamak3 and Yaprak Engin1 1
Abstract: As there is still a shortage of pediatric donor hearts, several techniques have been used to assist pediatric patients to survive until transplantation. VADs provide long-term support and ability of mobilization for children before a suitable heart becomes available. Several devices such as paracorporeal pumps have been used for this purpose, with acceptable morbidity and mortality rates. However, discharge is not possible, as there is no mobile drive unit for these small-sized pumps. The possible negative psychosocial impact of longterm hospitalization, away from home and school, may cause some adjustment problems in the future. In this case series, three pediatric patients that underwent intracorporeal LVAD implantation and returned to school are presented to share clinical experience and also to attract attention to the potential social and psychiatric implications.
Cardiovascular Surgery Department, Ege University Hospital, Izmir, Turkey, 2Pediatric Cardiology, Ege University Hospital, Izmir, Turkey, 3Child and Adolescent Psychiatry, Ege University Hospital, Izmir, Turkey Key words: adolescents – ventricular assist device – cardiomyopathy – pediatric heart transplant Cagatay Engin, MD, Ege University Hospital, Cardiovascular Surgery, 35100 Bornova, Izmir, Turkey Tel.: +902323904048 Fax: +902323390002 E-mail: [email protected] Accepted for publication 28 October 2014
HTx is currently the ultimate treatment for pediatric end-stage heart failure patients. As there is still a shortage of pediatric donor hearts, several techniques have been used to assist pediatric patients to survive until transplantation. Even though we are far from an ideal VAD, better devices are developed day by day and it seems that they have similar outcomes to HTx at least through the first year. Unfortunately, the development of VADs for pediatric patients has not been as rapid as in the adult population. Therefore, today, very few options are available for children. The first pediatric device approved by the United States Food and Drug Administration is the DeBakey VAD Child (MicroMed Technology, Inc, Houston, TX, USA), but some problems resulted in limited common usage. The only
currently available pediatric paracorporeal pump, the Berlin Heart EXCOR (Berlin Heart GmbH, Berlin, Germany), does have acceptable morbidity and mortality rates (1, 2). However, discharge is not possible, as there is no mobile drive unit for the small-sized pumps. The possible negative psychosocial impact of long-term hospitalization away from home and school may result in future adjustment problems. This problem appears to be solved with the intracorporeal pumps (3, 4). In this report, three pediatric patients who underwent intracorporeal LVAD implantation and returned to their school and social lives are presented to share clinical experience and also to attract attention to the potential social and psychiatric implications. Patients and methods Patients
Abbreviations: CGIS-I, Clinical Global Impression Scale–Severity; CGIS-S, Clinical Global Impression Scale–Improvement; CMP, cardiomyopathy; HTx, heart transplantation; INR, international normalized ratio; INTERMACS, the Interagency Registry for Mechanically Assisted Circulatory Support; LVAD, left ventricular assist device; TRF, Teacher Report Form; VAD, ventricular assist device.
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Three pediatric end-stage heart failure patients underwent LVAD implantation for bridge to transplantation. All patients were diagnosed with dilated CMP. Two were on intravenous inotropic support with acceptable blood pressure, but with rapid deterioration of kidney function and signs of congestion (INTERMACS 2). The third was stable, but dependent on inotropic support (INTERMACS 3). Demographics and medical records are shown in Table 1.
Pediatric VADs Table 1. Medical history, demographics, and patient status
Gender, age Weight, height Diagnosis Echocardiogram
INTERMACS grade VAD support days and current status Length of hospital stay (days) Home duration before school (days) School attendance with VAD (months)
Case 1
Case 2
Case 3
Female, 12 yr 44 kg, 157 cm Dilated CMP LVEF: 18%, RVEF: 40%, TAPSE: 15, Moderate mitral regurgitation, Patent foramen ovale 2 205 and HTx 37 52 4
Female, 8 yr 19 kg, 133 cm Dilated CMP LVEF: 22%, RVEF 40% TAPSE: 15, Moderate mitral and tricuspid regurgitation, Patent foramen ovale 2 680 and on device 20 75 19
Male, 14 yr 38 kg, 145 cm Dilated CMP LVEF 22% RVEF 40% TAPSE 16 Moderate mitral regurgitation 3 582 and on device 32 35 2
LVEF, left ventricular ejection fraction; RVEF, right ventricular ejection fraction; TAPSE, tricuspid annular plane systolic excursion.
Implanted VAD
Psychiatric evaluation of cases TM
The HeartWare HVAD (HeartWare, Inc., Miami, FL, USA), a third generation, implantable LVAD, uses a hydrodynamic centrifugal pump with a short integrated inflow cannula. The cannula design and the device’s small size facilitate intrapericardial placement. It has a displaced volume of just 45 cc, weighs 145 g, and can deliver flows up to 10 L/min.
Surgical procedure The surgical procedure was performed as previously reported (5). The only difference from the adult implant procedure was a cross-shaped scratch to the inner side of the pericardium that surrounds the left ventricular apex. The only purpose was to widen the pericardial space and prevent any pressure on the pump and hence the left ventricle. The incision was made avoiding extension to the pleura and abdomen.
Anticoagulation On the first postoperative day when bleeding subsided, anticoagulation with unfractionated heparin was administered to keep activated partial thromboplastin time between 50 and 60 s. Heparin was replaced with warfarin once the patient was stable, chest tubes had been removed, and gastrointestinal function had returned, with a target INR of 2.5–3.0. Acetylsalicylic acid (100 mg/day) was started on the third to fourth postoperative day.
In-home During follow-up, we measured INR levels every week. Physical examination, including growth measurements, echocardiographic, and psychological evaluations, was performed every month. All family members were educated on device function, troubleshooting, wound dressing, as well as usage, follow-up, and possible complications of warfarin. These sessions were repeated periodically.
Back to school Briefing for school teachers by pediatric physicians about the devices and disease was enough for the children’s acceptance as our laws support integrated education for disabled people.
A psychiatric consult and evaluation were performed before and after the VAD implant procedure, and all cases are still followed by the Consultation/Liaison Psychiatry Department of the Child and Adolescent Psychiatry Clinic. The CGIS was used for evaluations (6). The CGIS-S was used for all cases for determining the psychiatric disorder severity, and CGIS-I was used for evaluating the treatment effect.
Psychiatric scales CGIS-S: This scale was completed in the first psychiatric evaluation of the children by the child and adolescent psychiatrist. It is then repeated in other evaluations for comparison. The scores are: 1 = not ill; 2 = borderline ill; 3 = slightly ill; 4 = moderately ill; 5 = markedly ill; 6 = very much ill; 7 = severely ill. CGIS-I: This scale was completed following psychiatric treatment of the patients to evaluate any improvement of psychiatric symptoms. The scores are: 1 = very much improved; 2 = much improved; 3 = slightly improved; 4 = unchanged; 5 = slightly worse; 6 = much worse; 7 = severely worse. TRF: The TRF was used by the teachers of the patients for reporting their observations. TRF includes items for rating academic performance, four adaptive characteristics, and 118 specific behavioral/emotional problems to which the teacher responds with 0, 1, or 2 (not true, somewhat true, or very true), and two open-ended items. (7).
Results
There was no operative or in-hospital mortality. One patient required re-exploration due to bleeding. On follow-up, none of the patients had any symptoms of heart failure. All of the patients gained weight. In the first two cases, there were no neurologic- or device-related problems, and case #1 was transplanted in the seventh month of support. The third case had a late sternal wound infection followed by a minor cerebral hemorrhage. The only neurologic sequela is mild paraparesis on the right side. The mean time period between the operation and return to school was three months. The 83
Ozbaran et al.
information regarding their adjustment was gained by parental interview and school phone interviews. School performance was good in all patients. Non-attendance at school was limited to the hospital follow-up days, except in the third case with late sternal infection as described above. Their social interactions were defined as “normal again” by their family. History and results of psychiatric evaluations are summarized below. Case 1 (12-yr-old female)
This patient was an introverted and anxious girl before the illness period, and her academic performance was average compared to other students in the class (her school scores were 2–3/5). Before the operation, she had anxiety and feelings of “being dependent on a machine.” She had feelings of guilt and thought that her illness was because of verbal fights with her siblings. On the 20th postoperative day, fluoxetine 10 mg/day was started to treat her mild depressive and moderate anxiety symptoms (CGIS-S = 5, markedly ill). She initially experienced insomnia, obsessions (contamination/pollution), and compulsions (cleaning and washing hands frequently), and she could not get relief from her thoughts and had a fear of getting contaminated. As there was no improvement, after two wk her fluoxetine treatment was increased to 20 mg/day. She was discharged on the 37th postoperative day (CGISS = 3, slightly ill; CGIS-I = 3, slightly improved). On the first month after her discharge, she was evaluated as an outpatient and her symptom severity was improved (CGISS = 2, borderline ill; CGIS-I = 2, much improved). She was back to school after two months, and she was happy with her school and social life (CGIS-S = 2, borderline ill; CGISI = 1 very much improved). She noted that she never felt isolated because of her device, neither at home nor at school. Her academic performance remained average during her first term at school. She was on fluoxetine treatment until she was transplanted following seven months of device support. Case 2 (eight-yr-old female)
This patient was first seen in the first year of her disease at the pediatric cardiology clinic intensive care department due to her mild depressive symptoms and somatic complaints. She was hospitalized for 20 days. She had a fear of having the operation and was anxious in the intensive care unit. As her implant was planned within two days following the consultation, the 84
consultation liaison psychiatry team did not start antidepressant or anxiolytic medications for her depressive symptoms (CGIS-S = 2, borderline ill). At the second psychiatric visit post-implant, depressive mood, mild anhedonia, and mild anxiety symptoms were noted and 5 mg/day fluoxetine was started for her depressive symptoms (CGIS-S = 3). She wanted to be discharged and attend school again. She was discharged on the 20th postoperative day, and 2.5 months later she returned to her school. At her third postdischarge evaluation as an outpatient, she was relieved of all psychiatric symptoms (CGISS = 1, not ill; CGIS-I = 1, very much improved). Her social life adjustment and school performance were excellent according to teachers’ reports (school scores 5/5), parental reports, and self-assessments; therefore, fluoxetine treatment was stopped. She is currently still on device support. She is approaching completion of her second school year, and according to her teachers she is one of the most successful students. Case 3 (14-yr-old male)
This patient was an adolescent boy diagnosed with dilated CMP one month prior and was hospitalized for 26 days prior to the implant procedure. He was seen in the pediatric cardiology department and did not have any psychiatric symptoms, with the exception of mild anxiety regarding the cardiac operation (CGIS-S = 1, not ill). One month post-discharge, he started school and his adjustment was determined as very good by his parents and teacher. He was free of any psychiatric symptoms in his followup. Unfortunately, after two months of school, he had to be hospitalized due to sternal infection and neurologic complications. Although these adverse events were almost completely resolved, he has not yet resumed school. He is currently on device support. Conclusion
In pediatric patients, 10-yr survival after HTx is about 50–60% and the retransplantation rate is higher than that observed in the adult population. Also, the possible long-term complications of immunosuppressive therapy, such as cancer, are still of major concern, and further research is needed. These disadvantages of pediatric HTx give rise to the thought that for pediatric patients, postponing transplantation may be a good option. Thus, the opportunity to delay transplantation is an important advantage of VADs. Today, in the absence of adverse events in a pediatric VAD
Pediatric VADs
patient, bridge-to-transplantation itself is a challenging decision to make. In the last five yr in our clinic, 14 of the more than 200 VAD implants were performed in patients aged 16 and under. In the early period, we used the Berlin Heart EXCOR devices for every pediatric patient (n = 9) as there was no other option. Currently, we prefer the HeartWare VAD when the patient’s weight is more than 18 kg. Two of five HeartWare patients were successfully transplanted before they had an opportunity to resume school. Among EXCOR patients, adolescent patients had been discharged with mobile units. But, preadolescent patients had to remain hospitalized for a very long period of time, sometimes for more than two yr while awaiting transplantation. During this period, we observed many social problems. They tried to continue their education in our hospital with young volunteer teachers. However, there were some problems with the quality and continuity of the education. We believe these problems are as important as organ and pump concerns. It has been estimated that almost 40% of children and adolescents with chronic illness experience school-related problems (8). These types of problems are important threats to their social life and “health.” An educational study of pediatric heart transplant patients concluded that there was a significant correlation between length of absence from school following HTx and the occurrence of underachievement, indicating that underachievement is at least in part attributable to a lack of schooling (9). Therefore, we believe that an educational schedule must be planned once the patient is stabilized post-implant. In addition to educational problems, when illness and hospitalization disrupt normal activities and relationships, the result is increase in fear and anxiety – and not only for the ill child but also for the entire family. Besides the children’s symptoms, it is important to determine the presence of any parental psychiatric symptoms and treat their psychiatric disorders in a team approach, as the parents play an important role in the child’s care. Living with their families at home certainly decreases both patients’ and their parents’ anxiety; this is evidenced in the positive change in affect of patients following discharge from the hospital. A good patient (and parent)– doctor relationship is also very important. The knowledge that they can easily contact us by phone at any time of the day makes the patients and their families feel safe and more comfortable.
After parental interviews and school phone calls, we determined that these patients could easily perform basic daily social activities and attend school. All were able to participate in a normal school day. In this age group, the school day is five h. The battery life is limited to 4–5 h, but the patients overcame this problem with family support. For example, one of their parents waited in the schoolyard with extra batteries every day in case of emergency. None of the patients had mechanical issues with the pump or batteries. Their daily activities were not highly restricted, but in sports class they were only performing mild exercises and walking. They were not participating in competitive sports as they were all on an anticoagulation regimen. All cases showed great improvement after returning to their normal social life. We believe that discharging with a “cardiac machine” and starting a new life outside the hospital, especially attending school again, helped our patients’ recovery from their psychiatric problems and also improved their health. It is obvious that our ultimate purpose is not education and the schools cannot be expected to provide a solution to everything. We chose this topic to illuminate these later issues. It is certain that the psychiatric issues are prone to be thought of as negligible, especially in the setting of a life-giving therapy. But with so many improvements in technology, the result should also be a “good quality of life,” and new devices should be developed with the goal toward achieving a normal childhood, performing daily life activities and successful academic performance. Our target should be “nothing less than normal” for these children. Social arrangements and integration projects need to be discussed and part of the overall plan. Disclosure statement
Authors declare no potential conflict of interests. References 1. MORALES DL, ALMOND CS, JAQUISS RD, et al. Bridging children of all sizes to cardiac transplantation: The initial multicenter North American experience with the Berlin Heart EXCOR ventricular assist device. J Heart Lung Transplant 2011: 30: 1–8. 2. HETZER R, POTAPOV EV, ALEXI-MESKISHVILI V, et al. Single-center experience with treatment of cardiogenic shock in children by pediatric ventricular assist devices. J Thorac Cardiovasc Surg 2011: 141: 616–623. 3. CABRERA AG, SUNDARESWARAN KS, SAMAYOA AX, et al. Outcomes of pediatric patients supported by the HeartMate II left ventricular assist device in the United States. J Heart Lung Transplant 2013: 32: 1107–1113.
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Ozbaran et al. 4. MIERA O, POTAPOV EV, REDLIN M, et al. First experiences with the HeartWare ventricular assist system in children. Ann Thorac Surg 2011: 91: 1256–1260. 5. OZBARAN M, YAGDI T, ENGIN C, et al. New circulatory support system: Heartware. Transplant Proc 2012: 44: 1726– 1728. 6. National Institute of Mental Health. CGI (Clinic Global Impression) scale. Psychopharmacol Bull 1985: 21: 839.
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7. ACHENBACH TM. Manual for the Teacher Report Form and 1991 Profile. Burlington: Department of Psychiatry, University of Vermont, 1991. 8. BLOCH A. Chronic illness and its impact on academic achievement. Pediatrician 1986: 13: 128. 9. WRAY J, LONG T, RADLEY-SMITH R, YACOUB M. Returning to school after heart or heart-lung transplantation: How well do children adjust? Transplantation 2001: 72: 100–106.
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© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Pediatric Transplantation DOI: 10.1111/petr.12399
New era of pediatric ventricular assist devices: Let us go to school Ozbaran M, Yagdi T, Engin C, Ulger Z, Ozbaran B, Kose S, Kacamak D, Engin Y. (2015) New era of pediatric ventricular assist devices: Let us go to school. Pediatr Transplant, 19: 82–86. DOI: 10.1111/petr. 12399.
Mustafa Ozbaran1, Tahir Yagdi1, Cagatay Engin1, Zulal Ulger2, Burcu Ozbaran3, Sezen Kose3, Duygu Kacamak3 and Yaprak Engin1 1
Abstract: As there is still a shortage of pediatric donor hearts, several techniques have been used to assist pediatric patients to survive until transplantation. VADs provide long-term support and ability of mobilization for children before a suitable heart becomes available. Several devices such as paracorporeal pumps have been used for this purpose, with acceptable morbidity and mortality rates. However, discharge is not possible, as there is no mobile drive unit for these small-sized pumps. The possible negative psychosocial impact of longterm hospitalization, away from home and school, may cause some adjustment problems in the future. In this case series, three pediatric patients that underwent intracorporeal LVAD implantation and returned to school are presented to share clinical experience and also to attract attention to the potential social and psychiatric implications.
Cardiovascular Surgery Department, Ege University Hospital, Izmir, Turkey, 2Pediatric Cardiology, Ege University Hospital, Izmir, Turkey, 3Child and Adolescent Psychiatry, Ege University Hospital, Izmir, Turkey Key words: adolescents – ventricular assist device – cardiomyopathy – pediatric heart transplant Cagatay Engin, MD, Ege University Hospital, Cardiovascular Surgery, 35100 Bornova, Izmir, Turkey Tel.: +902323904048 Fax: +902323390002 E-mail: [email protected] Accepted for publication 28 October 2014
HTx is currently the ultimate treatment for pediatric end-stage heart failure patients. As there is still a shortage of pediatric donor hearts, several techniques have been used to assist pediatric patients to survive until transplantation. Even though we are far from an ideal VAD, better devices are developed day by day and it seems that they have similar outcomes to HTx at least through the first year. Unfortunately, the development of VADs for pediatric patients has not been as rapid as in the adult population. Therefore, today, very few options are available for children. The first pediatric device approved by the United States Food and Drug Administration is the DeBakey VAD Child (MicroMed Technology, Inc, Houston, TX, USA), but some problems resulted in limited common usage. The only
currently available pediatric paracorporeal pump, the Berlin Heart EXCOR (Berlin Heart GmbH, Berlin, Germany), does have acceptable morbidity and mortality rates (1, 2). However, discharge is not possible, as there is no mobile drive unit for the small-sized pumps. The possible negative psychosocial impact of long-term hospitalization away from home and school may result in future adjustment problems. This problem appears to be solved with the intracorporeal pumps (3, 4). In this report, three pediatric patients who underwent intracorporeal LVAD implantation and returned to their school and social lives are presented to share clinical experience and also to attract attention to the potential social and psychiatric implications. Patients and methods Patients
Abbreviations: CGIS-I, Clinical Global Impression Scale–Severity; CGIS-S, Clinical Global Impression Scale–Improvement; CMP, cardiomyopathy; HTx, heart transplantation; INR, international normalized ratio; INTERMACS, the Interagency Registry for Mechanically Assisted Circulatory Support; LVAD, left ventricular assist device; TRF, Teacher Report Form; VAD, ventricular assist device.
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Three pediatric end-stage heart failure patients underwent LVAD implantation for bridge to transplantation. All patients were diagnosed with dilated CMP. Two were on intravenous inotropic support with acceptable blood pressure, but with rapid deterioration of kidney function and signs of congestion (INTERMACS 2). The third was stable, but dependent on inotropic support (INTERMACS 3). Demographics and medical records are shown in Table 1.
Pediatric VADs Table 1. Medical history, demographics, and patient status
Gender, age Weight, height Diagnosis Echocardiogram
INTERMACS grade VAD support days and current status Length of hospital stay (days) Home duration before school (days) School attendance with VAD (months)
Case 1
Case 2
Case 3
Female, 12 yr 44 kg, 157 cm Dilated CMP LVEF: 18%, RVEF: 40%, TAPSE: 15, Moderate mitral regurgitation, Patent foramen ovale 2 205 and HTx 37 52 4
Female, 8 yr 19 kg, 133 cm Dilated CMP LVEF: 22%, RVEF 40% TAPSE: 15, Moderate mitral and tricuspid regurgitation, Patent foramen ovale 2 680 and on device 20 75 19
Male, 14 yr 38 kg, 145 cm Dilated CMP LVEF 22% RVEF 40% TAPSE 16 Moderate mitral regurgitation 3 582 and on device 32 35 2
LVEF, left ventricular ejection fraction; RVEF, right ventricular ejection fraction; TAPSE, tricuspid annular plane systolic excursion.
Implanted VAD
Psychiatric evaluation of cases TM
The HeartWare HVAD (HeartWare, Inc., Miami, FL, USA), a third generation, implantable LVAD, uses a hydrodynamic centrifugal pump with a short integrated inflow cannula. The cannula design and the device’s small size facilitate intrapericardial placement. It has a displaced volume of just 45 cc, weighs 145 g, and can deliver flows up to 10 L/min.
Surgical procedure The surgical procedure was performed as previously reported (5). The only difference from the adult implant procedure was a cross-shaped scratch to the inner side of the pericardium that surrounds the left ventricular apex. The only purpose was to widen the pericardial space and prevent any pressure on the pump and hence the left ventricle. The incision was made avoiding extension to the pleura and abdomen.
Anticoagulation On the first postoperative day when bleeding subsided, anticoagulation with unfractionated heparin was administered to keep activated partial thromboplastin time between 50 and 60 s. Heparin was replaced with warfarin once the patient was stable, chest tubes had been removed, and gastrointestinal function had returned, with a target INR of 2.5–3.0. Acetylsalicylic acid (100 mg/day) was started on the third to fourth postoperative day.
In-home During follow-up, we measured INR levels every week. Physical examination, including growth measurements, echocardiographic, and psychological evaluations, was performed every month. All family members were educated on device function, troubleshooting, wound dressing, as well as usage, follow-up, and possible complications of warfarin. These sessions were repeated periodically.
Back to school Briefing for school teachers by pediatric physicians about the devices and disease was enough for the children’s acceptance as our laws support integrated education for disabled people.
A psychiatric consult and evaluation were performed before and after the VAD implant procedure, and all cases are still followed by the Consultation/Liaison Psychiatry Department of the Child and Adolescent Psychiatry Clinic. The CGIS was used for evaluations (6). The CGIS-S was used for all cases for determining the psychiatric disorder severity, and CGIS-I was used for evaluating the treatment effect.
Psychiatric scales CGIS-S: This scale was completed in the first psychiatric evaluation of the children by the child and adolescent psychiatrist. It is then repeated in other evaluations for comparison. The scores are: 1 = not ill; 2 = borderline ill; 3 = slightly ill; 4 = moderately ill; 5 = markedly ill; 6 = very much ill; 7 = severely ill. CGIS-I: This scale was completed following psychiatric treatment of the patients to evaluate any improvement of psychiatric symptoms. The scores are: 1 = very much improved; 2 = much improved; 3 = slightly improved; 4 = unchanged; 5 = slightly worse; 6 = much worse; 7 = severely worse. TRF: The TRF was used by the teachers of the patients for reporting their observations. TRF includes items for rating academic performance, four adaptive characteristics, and 118 specific behavioral/emotional problems to which the teacher responds with 0, 1, or 2 (not true, somewhat true, or very true), and two open-ended items. (7).
Results
There was no operative or in-hospital mortality. One patient required re-exploration due to bleeding. On follow-up, none of the patients had any symptoms of heart failure. All of the patients gained weight. In the first two cases, there were no neurologic- or device-related problems, and case #1 was transplanted in the seventh month of support. The third case had a late sternal wound infection followed by a minor cerebral hemorrhage. The only neurologic sequela is mild paraparesis on the right side. The mean time period between the operation and return to school was three months. The 83
Ozbaran et al.
information regarding their adjustment was gained by parental interview and school phone interviews. School performance was good in all patients. Non-attendance at school was limited to the hospital follow-up days, except in the third case with late sternal infection as described above. Their social interactions were defined as “normal again” by their family. History and results of psychiatric evaluations are summarized below. Case 1 (12-yr-old female)
This patient was an introverted and anxious girl before the illness period, and her academic performance was average compared to other students in the class (her school scores were 2–3/5). Before the operation, she had anxiety and feelings of “being dependent on a machine.” She had feelings of guilt and thought that her illness was because of verbal fights with her siblings. On the 20th postoperative day, fluoxetine 10 mg/day was started to treat her mild depressive and moderate anxiety symptoms (CGIS-S = 5, markedly ill). She initially experienced insomnia, obsessions (contamination/pollution), and compulsions (cleaning and washing hands frequently), and she could not get relief from her thoughts and had a fear of getting contaminated. As there was no improvement, after two wk her fluoxetine treatment was increased to 20 mg/day. She was discharged on the 37th postoperative day (CGISS = 3, slightly ill; CGIS-I = 3, slightly improved). On the first month after her discharge, she was evaluated as an outpatient and her symptom severity was improved (CGISS = 2, borderline ill; CGIS-I = 2, much improved). She was back to school after two months, and she was happy with her school and social life (CGIS-S = 2, borderline ill; CGISI = 1 very much improved). She noted that she never felt isolated because of her device, neither at home nor at school. Her academic performance remained average during her first term at school. She was on fluoxetine treatment until she was transplanted following seven months of device support. Case 2 (eight-yr-old female)
This patient was first seen in the first year of her disease at the pediatric cardiology clinic intensive care department due to her mild depressive symptoms and somatic complaints. She was hospitalized for 20 days. She had a fear of having the operation and was anxious in the intensive care unit. As her implant was planned within two days following the consultation, the 84
consultation liaison psychiatry team did not start antidepressant or anxiolytic medications for her depressive symptoms (CGIS-S = 2, borderline ill). At the second psychiatric visit post-implant, depressive mood, mild anhedonia, and mild anxiety symptoms were noted and 5 mg/day fluoxetine was started for her depressive symptoms (CGIS-S = 3). She wanted to be discharged and attend school again. She was discharged on the 20th postoperative day, and 2.5 months later she returned to her school. At her third postdischarge evaluation as an outpatient, she was relieved of all psychiatric symptoms (CGISS = 1, not ill; CGIS-I = 1, very much improved). Her social life adjustment and school performance were excellent according to teachers’ reports (school scores 5/5), parental reports, and self-assessments; therefore, fluoxetine treatment was stopped. She is currently still on device support. She is approaching completion of her second school year, and according to her teachers she is one of the most successful students. Case 3 (14-yr-old male)
This patient was an adolescent boy diagnosed with dilated CMP one month prior and was hospitalized for 26 days prior to the implant procedure. He was seen in the pediatric cardiology department and did not have any psychiatric symptoms, with the exception of mild anxiety regarding the cardiac operation (CGIS-S = 1, not ill). One month post-discharge, he started school and his adjustment was determined as very good by his parents and teacher. He was free of any psychiatric symptoms in his followup. Unfortunately, after two months of school, he had to be hospitalized due to sternal infection and neurologic complications. Although these adverse events were almost completely resolved, he has not yet resumed school. He is currently on device support. Conclusion
In pediatric patients, 10-yr survival after HTx is about 50–60% and the retransplantation rate is higher than that observed in the adult population. Also, the possible long-term complications of immunosuppressive therapy, such as cancer, are still of major concern, and further research is needed. These disadvantages of pediatric HTx give rise to the thought that for pediatric patients, postponing transplantation may be a good option. Thus, the opportunity to delay transplantation is an important advantage of VADs. Today, in the absence of adverse events in a pediatric VAD
Pediatric VADs
patient, bridge-to-transplantation itself is a challenging decision to make. In the last five yr in our clinic, 14 of the more than 200 VAD implants were performed in patients aged 16 and under. In the early period, we used the Berlin Heart EXCOR devices for every pediatric patient (n = 9) as there was no other option. Currently, we prefer the HeartWare VAD when the patient’s weight is more than 18 kg. Two of five HeartWare patients were successfully transplanted before they had an opportunity to resume school. Among EXCOR patients, adolescent patients had been discharged with mobile units. But, preadolescent patients had to remain hospitalized for a very long period of time, sometimes for more than two yr while awaiting transplantation. During this period, we observed many social problems. They tried to continue their education in our hospital with young volunteer teachers. However, there were some problems with the quality and continuity of the education. We believe these problems are as important as organ and pump concerns. It has been estimated that almost 40% of children and adolescents with chronic illness experience school-related problems (8). These types of problems are important threats to their social life and “health.” An educational study of pediatric heart transplant patients concluded that there was a significant correlation between length of absence from school following HTx and the occurrence of underachievement, indicating that underachievement is at least in part attributable to a lack of schooling (9). Therefore, we believe that an educational schedule must be planned once the patient is stabilized post-implant. In addition to educational problems, when illness and hospitalization disrupt normal activities and relationships, the result is increase in fear and anxiety – and not only for the ill child but also for the entire family. Besides the children’s symptoms, it is important to determine the presence of any parental psychiatric symptoms and treat their psychiatric disorders in a team approach, as the parents play an important role in the child’s care. Living with their families at home certainly decreases both patients’ and their parents’ anxiety; this is evidenced in the positive change in affect of patients following discharge from the hospital. A good patient (and parent)– doctor relationship is also very important. The knowledge that they can easily contact us by phone at any time of the day makes the patients and their families feel safe and more comfortable.
After parental interviews and school phone calls, we determined that these patients could easily perform basic daily social activities and attend school. All were able to participate in a normal school day. In this age group, the school day is five h. The battery life is limited to 4–5 h, but the patients overcame this problem with family support. For example, one of their parents waited in the schoolyard with extra batteries every day in case of emergency. None of the patients had mechanical issues with the pump or batteries. Their daily activities were not highly restricted, but in sports class they were only performing mild exercises and walking. They were not participating in competitive sports as they were all on an anticoagulation regimen. All cases showed great improvement after returning to their normal social life. We believe that discharging with a “cardiac machine” and starting a new life outside the hospital, especially attending school again, helped our patients’ recovery from their psychiatric problems and also improved their health. It is obvious that our ultimate purpose is not education and the schools cannot be expected to provide a solution to everything. We chose this topic to illuminate these later issues. It is certain that the psychiatric issues are prone to be thought of as negligible, especially in the setting of a life-giving therapy. But with so many improvements in technology, the result should also be a “good quality of life,” and new devices should be developed with the goal toward achieving a normal childhood, performing daily life activities and successful academic performance. Our target should be “nothing less than normal” for these children. Social arrangements and integration projects need to be discussed and part of the overall plan. Disclosure statement
Authors declare no potential conflict of interests. References 1. MORALES DL, ALMOND CS, JAQUISS RD, et al. Bridging children of all sizes to cardiac transplantation: The initial multicenter North American experience with the Berlin Heart EXCOR ventricular assist device. J Heart Lung Transplant 2011: 30: 1–8. 2. HETZER R, POTAPOV EV, ALEXI-MESKISHVILI V, et al. Single-center experience with treatment of cardiogenic shock in children by pediatric ventricular assist devices. J Thorac Cardiovasc Surg 2011: 141: 616–623. 3. CABRERA AG, SUNDARESWARAN KS, SAMAYOA AX, et al. Outcomes of pediatric patients supported by the HeartMate II left ventricular assist device in the United States. J Heart Lung Transplant 2013: 32: 1107–1113.
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Ozbaran et al. 4. MIERA O, POTAPOV EV, REDLIN M, et al. First experiences with the HeartWare ventricular assist system in children. Ann Thorac Surg 2011: 91: 1256–1260. 5. OZBARAN M, YAGDI T, ENGIN C, et al. New circulatory support system: Heartware. Transplant Proc 2012: 44: 1726– 1728. 6. National Institute of Mental Health. CGI (Clinic Global Impression) scale. Psychopharmacol Bull 1985: 21: 839.
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7. ACHENBACH TM. Manual for the Teacher Report Form and 1991 Profile. Burlington: Department of Psychiatry, University of Vermont, 1991. 8. BLOCH A. Chronic illness and its impact on academic achievement. Pediatrician 1986: 13: 128. 9. WRAY J, LONG T, RADLEY-SMITH R, YACOUB M. Returning to school after heart or heart-lung transplantation: How well do children adjust? Transplantation 2001: 72: 100–106.
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