Advertisement

Pediatric Surgery pp 1259-1289 | Cite as

Long-Term Outcomes in Newborn Surgery

  • Risto J. RintalaEmail author
  • Mikko P. Pakarinen
  • Antti Koivusalo
Reference work entry

Abstract

During the last decades, the mortality of patients with congenital defects and malformation complexes has continued to decrease. This development is attributed to technical advances and improved neonatology and pediatric intensive care. For pediatric surgeons, the final outcome measure of repaired congenital defects or acquired neonatal surgical problems is the functional outcome in an adult patient. Unfortunately, a significant percentage of survivors have permanent morbidities and long-term handicaps. Many of these abnormalities are carried on to adulthood, with often significant impact on the quality of life. This chapter highlights the long-term data for congenital diaphragmatic hernia, esophageal atresia, Hirschsprung’s disease, and anorectal malformations with regard to all relevant functional aspects.

Keywords

Long-term outcome Follow-up Morbidity Quality of life Congenital diaphragmatic hernia Esophageal atresia Gastroesophageal reflux Hirschsprung’s disease Anorectal malformations 

References

  1. Bai Y, Chen H, Hao J, et al. Long-term outcome and quality of life after the Swenson procedure for Hirschsprung’s disease. J Pediatr Surg. 2002;37:639–42.PubMedCrossRefGoogle Scholar
  2. Baillie CT, Kenny SE, Rintala RJ, et al. Long-term outcome and colonic motility after the Duhamel procedure for Hirschsprung’s disease. J Pediatr Surg. 1999;34:325–9.PubMedCrossRefGoogle Scholar
  3. Beek FJA, Boemers TML, Witkamp TD, et al. Spine evaluation in children with ARM. Pediatr Radiol. 1995;25:S28–32.PubMedCrossRefGoogle Scholar
  4. Conway SJ, Craigie RJ, Cooper LH, et al. Early adult outcome of the Duhamel procedure for left-sided Hirschsprung disease – a prospective serial assessment study. J Pediatr Surg. 2007;42:1429–32.PubMedCrossRefGoogle Scholar
  5. D’Antiga L, Goulet O. Intestinal failure in children: the European view. J Pediatr Gastroenterol Nutr. 2013;56:118–26.PubMedCrossRefGoogle Scholar
  6. Danzer E, Gerdes M, D’Agostino JA, Partridge EA, Hoffman-Craven CH, Bernbaum J, Rintoul NE NE, Flake AW, Adzick NS, Hedrick HL. Preschool neurological assessment in congenital diaphragmatic hernia survivors: outcome and perinatal factors associated with neurodevelopmental impairment. Early Hum Dev. 2013;89:393–400.PubMedCrossRefGoogle Scholar
  7. de Vries PA, Peña A. Posterior sagittal anorectoplasty. J Pediatr Surg. 1982;17:638–43.CrossRefGoogle Scholar
  8. Diseth TH, Emblem R. Somatic function, mental health and psychosocial adjustment of adolescents with anorectal anomalies. J Pediatr Surg. 1996;31:638–43.PubMedCrossRefGoogle Scholar
  9. Diseth TH, Bjornland K, Novik TS, et al. Bowel function, mental health, and psychosocial function in adolescents with Hirschsprung’s disease. Arch Dis Child. 1997;76:100–6.PubMedPubMedCentralCrossRefGoogle Scholar
  10. Escobar MA, Grosfeld JL, West KW, et al. Long-term outcomes in total colonic aganglionosis: a 32-year experience. J Pediatr Surg. 2005;40:955–61.PubMedCrossRefGoogle Scholar
  11. Eypasch E, Williams JI, Wood-Dauphinee S, et al. Gastrointestinal quality of life index: development, validation, and application of a new instrument. Br J Surg. 1995;82:216–22.CrossRefGoogle Scholar
  12. Gallo G, Zwaveling S, Groen H, Van der Zee D, Hulscher J. Long-gap esophageal atresia: a meta-analysis of jejunal interposition, colon interposition, and gastric pull-up. Eur J Pediatr Surg. 2012;22:420–5.PubMedPubMedCentralCrossRefGoogle Scholar
  13. Goulet O, Ruemmele F. Causes and management of intestinal failure in children. Gastroenterology. 2006;130:S16–28.CrossRefGoogle Scholar
  14. Goulet O, Ruemmele F, Lacaille F, Colomb V. Irreversible intestinal failure. J Pediatr Gastroenterol Nutr. 2004;38:250–69.PubMedCrossRefGoogle Scholar
  15. Grano C, Aminoff D, Lucidi F, Violani C. Long-term disease-specific quality of life in adult anorectal malformation patients. J Pediatr Surg. 2011;46:691–8.PubMedCrossRefGoogle Scholar
  16. Grano C, Aminoff D, Lucidi F, Violani C. Long-term disease-specific quality of life in children and adolescent patients with ARM. J Pediatr Surg. 2012;47:1317–22.PubMedCrossRefGoogle Scholar
  17. Gutierrez IM, Kang KH, Jaksic T. Neonatal short bowel syndrome. Semin Fetal Neonatal Med. 2011;16:157–63.PubMedCrossRefGoogle Scholar
  18. Hall R, Fleming S, Gysler M, et al. The genital tract in female children with imperforate anus. Am J Obstet Gynecol. 1985;151:169–71.PubMedCrossRefGoogle Scholar
  19. Hartman EE, Oort FJ, Aronson DC, et al. Critical factors affecting quality of life of adult patients with ARM of Hirschsprung’s disease. Am J Gastroenterol. 2004a;99:907–13.PubMedCrossRefGoogle Scholar
  20. Hartman EE, Oort FJ, Sprangers MA, et al. Factors affecting quality of life of children and adolescents with anorectal malformations of Hirschsprung’s disease. JPGN. 2008;47:463–7.PubMedGoogle Scholar
  21. Hashish MS, Dawoud HH, Hirschl RB, et al. Long-term functional outcome and quality of life in patients with high imperforate anus. J Pediatr Surg. 2010;45(1):224–30.PubMedCrossRefGoogle Scholar
  22. Hassett S, Snell S, Hughes-Thomas A, Holmes K. 10-year outcome of children born with anorectal malformation, treated by posterior sagittal anorectoplasty, assessed according to the Krickenbeck classification. J Pediatr Surg. 2009;44:399–403.PubMedCrossRefGoogle Scholar
  23. Hassink EA, Rieu PN, Severijnen RS, et al. Are adults content or continent after repair for high anal atresia? A long-term follow-up study in patients 18 years of age and older. Ann Surg. 1993;218:196–200.PubMedPubMedCentralCrossRefGoogle Scholar
  24. Hassink EA, Rieu PN, Brugman AT, et al. Quality of life after operatively corrected high anorectal malformation. A long-term follow-up study in patients 18 years of age and older. J Pediatr Surg. 1994;29:773–6.PubMedCrossRefGoogle Scholar
  25. Hayward MJ, Kharasch V, Sheils C,Friedman S, Dunleavy M-J, Utter S, Zurakowski D, Jennings R, Wilson JM. Predicting inadequate long-term lung development in children with congenital diaphragmatic hernia: an analysis of longitudinal changes in ventilation and perfusion J Pediatr Surg 2007;42:112– 116.PubMedCrossRefGoogle Scholar
  26. Heikkinen M, Rintala RJ, Louhimo I. Bowel function and quality of life in adult patients with operated Hirschsprung’s disease. Pediatr Surg Int. 1995;10:342–4.CrossRefGoogle Scholar
  27. Heikkinen M, Rintala R, Luukkonen P. Long-term anal sphincter performance after surgery for Hirschsprung’s disease. J Pediatr Surg. 1997;32:1443–6.PubMedCrossRefGoogle Scholar
  28. Holschneider AM. Elektromanometrie des Enddarms. Munich/Wien/Baltimore: Urban & Schwarzenberg; 1983. p. 213–8.Google Scholar
  29. Holschneider A, Hutson J, Pena A, et al. Preliminary report on the international conference for the development of standards for the treatment of anorectal malformations. J Pediatr Surg. 2005;40:1521–6.PubMedPubMedCentralCrossRefGoogle Scholar
  30. Ieiri S, Nakatsuji T, Akiyoshi J, et al. Long-term outcomes and quality of life of Hirschsprung disease in adolescents who have reached 18 years or older – a 47-year single institute experience. J Pediatr Surg. 2010;45:2398–402.PubMedCrossRefGoogle Scholar
  31. Iwai N, Degichi E, Kimura O, et al. Social quality of life for adult patients with anorectal malformations. J Pediatr Surg. 2007;42:313–7.PubMedCrossRefGoogle Scholar
  32. Jarvi K, Koivusalo A, Rintala RJ, Pakarinen MP. Anorectal manometry with reference to operative rectal biopsy for the diagnosis/exclusion of Hirschsprung’s disease in children under 1 year of age. Int J Color Dis. 2009;24:451–4.CrossRefGoogle Scholar
  33. Jarvi K, Laitakari E, Koivusalo A, Rintala RJ, Pakarinen MP. Bowel function and gastrointestinal quality of life among adults operated for Hirschsprung disease during childhood. A population-based study. Ann Surg. 2010;252:977–81.PubMedCrossRefGoogle Scholar
  34. Jayasekera CS, Desmond PV, Holmes JA, Kitson M, Taylor AC. Cluster of 4 cases of esophageal squamous cell cancer developing in adults with surgically corrected esophageal atresia – time for screening to start. J Pediatr Surg. 2012;47:646–51.PubMedCrossRefGoogle Scholar
  35. Karkowski J, Pollock WF, Landon CW. Imperforate anus. Eighteen to thirty year follow-up study. Am J Surg. 1973;126:141–7.PubMedCrossRefGoogle Scholar
  36. Kiesewetter WB, Chang JHT. Imperforate anus: a five to thirty year follow-up perspective. Prog Pediatr Surg. 1977;10:110–20.Google Scholar
  37. Killelea BK, Lazar EL, Vitale MG. Principles of outcome analysis. In: Stringer MD, Oldham KT, Mouriquand PDE, editors. Pediatric surgery and urology. Chapter 2. 2nd ed. Cambridge: Cambridge University Press; 2006. p. 17–28.CrossRefGoogle Scholar
  38. Koivusalo A, Pakarinen M, Rintala RJ, Lindahl H. Does postoperative pH monitoring predict complicated gastroesophageal reflux in patients with esophageal atresia? Pediatr Surg Int. 2004;20:670–4.PubMedCrossRefGoogle Scholar
  39. Koivusalo A, Pakarinen M, Vanamo K, Lindahl H, Rintala RJ. Health-related quality of life in adults after repair of congenital diaphragmatic defects – a questionnaire study. J Pediatr Surg. 2005a;40:1376–81.PubMedCrossRefGoogle Scholar
  40. Koivusalo A, Pakarinen MP, Turunen P, Saarikoski H, Lindahl H, Rintala RJ. Health-related quality of life in adult patients with esophageal atresia – a questionnaire study. J Pediatr Surg. 2005b;40:307–12.CrossRefGoogle Scholar
  41. Koivusalo A, Pakarinen MP, Rintala RJ. The cumulative incidence of significant gastrooesophageal reflux in patients with oesophageal atresia with a distal fistula – a systematic clinical, pH-metric, and endoscopic follow-up study. J Pediatr Surg. 2007;42:370–4.PubMedCrossRefGoogle Scholar
  42. Koivusalo AI, Mikko P, Pakarinen MP, Lindahl HG, Rintala RJ. The cumulative incidence of significant gastroesophageal reflux in patients with congenital diaphragmatic hernia – a systematic clinical, pH-metric, and endoscopic follow-up study. J Pediatr Surg. 2008a;43:279–82.PubMedCrossRefGoogle Scholar
  43. Koivusalo AI, Pakarinen MP, Pauniaho SL, Rintala RJ. Antegrade continence enema in the treatment of congenital fecal incontinence beyond childhood. Dis Colon Rectum. 2008b;51:1605–10.PubMedCrossRefGoogle Scholar
  44. Koivusalo AI, Pakarinen MP, Rintala RJ. Modern outcomes of oesophageal atresia: single centre experience over the last twenty years. J Pediatr Surg. 2013;48:297–303.PubMedCrossRefGoogle Scholar
  45. Koivusalo AI, Pakarinen MP, Lindahl HG, Rintala RJ. Endoscopic surveillance after repair of oesophageal atresia: longitudinal study in 209 patients. J Pediatr Gastroenterol Nutr. 2016;62(4):562–6.PubMedCrossRefGoogle Scholar
  46. Konuma K, Ikawa H, Kohno M, et al. Sexual problems in male patients older than 20 years with anorectal malformations. J Pediatr Surg. 2006;41:306–9.PubMedCrossRefGoogle Scholar
  47. Kurvinen A, Nissinen MJ, Gylling H, Miettinen TA, Lampela H, Koivusalo AI, Rintala RJ, Pakarinen MP. Effects of long-term parenteral nutrition on serum lipids, plant sterols, cholesterol metabolism and liver histology in pediatric intestinal failure. J Pediatr Gastroenterol Nutr. 2011;53:440–6.PubMedGoogle Scholar
  48. Kurvinen A, Nissinen MJ, Andersson S, Korhonen P, Ruuska T, Taimisto T, Kalliomäki M, Lehtonen L, Sankilampi U, Arikoski P, Saarela T, Miettinen TA, Gylling H, Pakarinen MP. Parenteral plant sterols and intestinal failure associated liver disease in neonates: a prospective nationwide study. J Pediatr Gastroenterol Nutr. 2012;54:803–11.PubMedCrossRefGoogle Scholar
  49. Kyrklund K, Koivusalo A, Rintala RJ, Pakarinen MP. Evaluation of bowel function and fecal continence in 594 Finnish individuals aged 4 to 26 years. Dis Colon Rectum. 2012;55(6):671–6.PubMedCrossRefGoogle Scholar
  50. Kyrklund K, Taskinen S, Rintala RJ, Pakarinen MP. Sexual Function, Fertility and Quality of Life after Modern Treatment of Anorectal Malformations. J Urol. 2016;196(6):1741–6.PubMedCrossRefGoogle Scholar
  51. Langemeijer RATM, Molenaar JC. Continence after posterior sagittal anorectoplasty. J Pediatr Surg. 1991;26:587–90.PubMedCrossRefGoogle Scholar
  52. Levitt MA, Patel M, Rodriguez G, et al. The tethered spinal cord in patients with anorectal malformations. J Pediatr Surg. 1997;32:462–8.PubMedCrossRefGoogle Scholar
  53. Levitt MA, Stein DM, Pena A. Gynecologic concerns in the treatment of teenagers with cloaca. J Pediatr Surg. 1998;33:188–93.PubMedCrossRefGoogle Scholar
  54. Lindahl H, Rintala R, Sariola H, Louhimo I. Cervical Barrett’s esophagus: a common complication of gastric tube reconstruction. J Pediatr Surg. 1990;25:446–8.PubMedCrossRefGoogle Scholar
  55. Lindahl H, Rintala R, Sariola H, Louhimo I. Long-term endoscopic and flow cytometric follow-up of colon interposition. J Pediatr Surg. 1992;27:859–61.PubMedCrossRefGoogle Scholar
  56. Louhimo I, Lindahl H. Esophageal atresia: primary results of 500 consecutively treated patients. J Pediatr Surg. 1983;18:217–29.PubMedCrossRefGoogle Scholar
  57. Mäkitie O, Heikkinen M, Kaitila I, Rintala R. Hirschsprung’s disease in cartilage-hair hypoplasia has poor prognosis. J Pediatr Surg. 2002;37:1585–8.PubMedCrossRefGoogle Scholar
  58. Malmström K, Lohi J, Lindahl H, et al. Longitudinal follow-up of bronchial inflammation, respiratory symptoms, and pulmonary function in adolescents after repair of esophageal atresia with tracheoesophageal fistula. J Pediatr. 2008;153:396–401.PubMedCrossRefGoogle Scholar
  59. Malone PS, Ransley PG, Kiely EM. Preliminary report: the antegrade continence enema. Lancet. 1990;336:1217–8.PubMedPubMedCentralCrossRefGoogle Scholar
  60. Matley PJ, Cywes S, Berg A, et al. A 20-year follow-up of children born with vestibular anus. Pediatr Surg Int. 1990;5:37–40.CrossRefGoogle Scholar
  61. Metts JC III, Kotkin L, Kasper S, et al. Genital malformations and coexistent urinary tract and spinal anomalies in patients with imperforate anus. J Urol. 1997;158:1298–300.PubMedCrossRefGoogle Scholar
  62. Moore SW, Albertyn R, Cywes S. Clinical outcome and long-term quality of life after surgical correction of Hirschsprung’s disease. J Pediatr Surg. 1996;31:1496–502.PubMedCrossRefGoogle Scholar
  63. Moya FR, Thomas VL, Romaguera J, Mysore MR, Maberry M, Bernard A, Freund M. Fetal lung maturation in congenital diaphragmatic hernia. Am J Obstet Gynecol. 1995;173:1401–5.PubMedCrossRefGoogle Scholar
  64. Muratore CS, Utter S, Jaksic T, Lund DP, Wilson JM. Nutritional morbidity in survivors of congenital diaphragmatic hernia. J Pediatr Surg. 2001;36:1171–6.CrossRefGoogle Scholar
  65. Mutanen A, Mäkitie O, Pakarinen MP. Risk of metabolic bone disease is increased both during and after weaning off parenteral nutrition in pediatric intestinal failure. Horm Res Paediatr. 2013a;25:227–35.CrossRefGoogle Scholar
  66. Mutanen A, Lohi J, Heikkilä P, Koivusalo A, Rintala R, Pakarinen MP. Persistent abnormal liver fibrosis after weaning off parenteral nutrition in pediatric intestinal failure. Hepatology. 2013b;  https://doi.org/10.1002/hep.26360. [Epub ahead of print]PubMedCrossRefGoogle Scholar
  67. Neuvonen MI, Kyrklund K, Rintala RJ, Pakarinen MP. Bowel function and quality of life after transanal endorectal pull-through for Hirschsprung disease: controlled outcomes up to adulthood. Ann Surg. 2017 Mar;265(3):622–9.PubMedCrossRefGoogle Scholar
  68. Nixon HH, Puri P. The results of treatment of anorectal anomalies: a thirteen to twenty year follow-up. J Pediatr Surg. 1977b;12:27–3790.PubMedCrossRefGoogle Scholar
  69. Olieman JF, Penning C, Poley MJ, Utens E, Hop W, Tibboel D. Impact of infantile short bowel syndrome on long-term health-related quality of life: a cross sectional study. J Pediatr Surg. 2012;47:1309–16.PubMedPubMedCentralCrossRefGoogle Scholar
  70. Oliemen JF, Penning C, Spoel M, Ijsseltijn H, van den Hoonaard TL, Excher JC, Bax NM, Tibboel D. Long-term impact of infantile short bowel syndrome on nutritional status and growth. Br J Nutr. 2012;107:1489–97.CrossRefGoogle Scholar
  71. Ong NT, Beasley SW. Long-term functional results after perineal surgery for low anorectal anomalies. Pediatr Surg Int. 1990;5:238–40.Google Scholar
  72. Pakarinen MP, Rintala RJ, Koivusalo A, Heikkinen M, Lindahl H, Pukkala E. Increased incidence of medullary thyroid carcinoma in patients treated for Hirschsprung’s disease. J Pediatr Surg. 2005;40:1532–4.PubMedCrossRefGoogle Scholar
  73. Pakarinen MP, Koivusalo AI, Rintala RJ. Outcomes of intestinal failure – a comparison between children with short bowel and dysmotile intestine. J Pediatr Surg. 2009a;44:2139–44.PubMedCrossRefGoogle Scholar
  74. Pakarinen MP, Kurvinen A, Gylling H, Miettinen TA, Pesonen M, Kallio M, Koivusalo AI, Nissinen MJ. Cholesterol metabolism in pediatric short bowel syndrome after weaning off parenteral nutrition. Dig Liver Dis. 2010;42:554–9.PubMedCrossRefGoogle Scholar
  75. Pakarinen MP, Kurvinen A, Koivusalo AI, Iber T, Rintala RJ. Long-term controlled outcomes after autologous intestinal reconstruction surgery in treatment of severe short bowel syndrome. J Pediatr Surg. 2013a;48:339–44.PubMedPubMedCentralCrossRefGoogle Scholar
  76. Pakarinen MP, Kurvinen A, Koivusalo AI, Makisalo H, Jalanko H, Rintala RJ. Surgical treatment and outcomes of severe pediatric intestinal motility disorders requiring parenteral nutrition. J Pediatr Surg. 2013b;48:333–8.PubMedCrossRefGoogle Scholar
  77. Pena A. Anorectal malformations. Semin Pediatr Surg. 1995;4:35–47.PubMedGoogle Scholar
  78. Pena A, Hong A. Advances in the management of anorectal malformations. Am J Surg. 2000;180:370–6.PubMedCrossRefGoogle Scholar
  79. Pichler J, Chomtho S, Fewtrell M, Macdonald S, Hill SM. Growth and bone health in pediatric intestinal failure patients receiving long-term parenteral nutrition. Am J Clin Nutr. 2013;97(6):1260–9.PubMedCrossRefGoogle Scholar
  80. Poley MJ, Stolk EA, Tibboel D, Molenaar JC, Busschbach JJ. Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia. Arch Dis Child. 2004;89:836–41.PubMedPubMedCentralCrossRefGoogle Scholar
  81. Rangel SJ, Lawal TA, Bischoff A, et al. The appendix as a conduit for antegrade continence enemas in patients with anorectal malformations: lessons learned from 163 cases treated over 18 years. J Pediatr Surg. 2011;46:1236–42.PubMedCrossRefGoogle Scholar
  82. Reding R, De Goyet J d V, Gosseye S, et al. Hirschsprung’s disease: a 20-year experience. J Pediatr Surg. 1997;32:1221–5.PubMedCrossRefGoogle Scholar
  83. Rintala RJ. Congenital cloaca: long-term follow-up results with emphasis on outcomes beyond childhood. Semin Pediatr Surg. 2016;25(2):112–6.PubMedCrossRefGoogle Scholar
  84. Rintala R, Lindahl H. Is normal bowel function possible after repair of intermediate and high anorectal malformations. J Pediatr Surg. 1995;30:491–4.PubMedCrossRefGoogle Scholar
  85. Rintala RJ, Lindahl H. PSARP is superior to sacroperineal/sacroabdominoperineal pull-through – a long term follow-up study in males with high anorectal anomalies. J Pediatr Surg. 1999;34:334–7.PubMedCrossRefGoogle Scholar
  86. Rintala RJ, Pakarinen M. Hirschsprung’s disease. In: Stringer M, Oldham KT, Mouriquand PD, editors. Pediatric surgery and urology. Long-term outcomes. Cambridge: Cambridge University Press; 2006. p. 385–400.CrossRefGoogle Scholar
  87. Rintala RJ, Pakarinen MP. Outcome of anorectal malformations and Hirschsprung’s disease beyond childhood. Semin Pediatr Surg. 2010;19:160–7.PubMedCrossRefGoogle Scholar
  88. Rintala R, Lindahl H, Louhimo I. Anorectal malformations – results of treatment and long term follow-up of 208 patients. Pediatr Surg Int. 1991;6:36–41.CrossRefGoogle Scholar
  89. Rintala R, Mildh L, Lindahl H. Fecal continence and quality of life in adult patients with an operated low anorectal malformation. J Pediatr Surg. 1992;27:902–5.PubMedCrossRefGoogle Scholar
  90. Rintala R, Mildh L, Lindahl H. Fecal continence and quality of life in adult patients with an operated high or intermediate anorectal malformation. J Pediatr Surg. 1994;29:777–80.PubMedCrossRefGoogle Scholar
  91. Rintala RJ, Lindahl HG, Rasanen M. Do children with repaired low anorectal malformations have normal bowel function? J Pediatr Surg. 1997;32:823–6.PubMedCrossRefGoogle Scholar
  92. Rivosecchi M, Lucchetti MC, De Gennaro M, et al. Spinal dysraphism detected by magnetic resonance imaging in patients with anorectal anomalies: incidence and clinical significance. J Pediatr Surg. 1995;30:488–90.PubMedCrossRefGoogle Scholar
  93. Ruttenstock E, Puri P. A meta-analysis of clinical outcome in patients with total intestinal aganglionosis. Pediatr Surg Int. 2009;25:833–9.CrossRefGoogle Scholar
  94. Salvia G, Guarino A, Terrin G, Cascioli C, Plaudetto R, Indrio F, Lega L, Stronati M, Corvaglia L, Tagliabue P, De Curtis M. Neonatal onset intestinal failure: an Italian multicenter study. J Pediatr. 2008;153:674–6.PubMedCrossRefGoogle Scholar
  95. Sanchez SE, McAteer JP, Goldin AB, Horslen S, Huebner CE, Javid PJ. Health-related quality of life in children with intestinal failure. J Pediatr Gastroenterol Nutr. 2013;57(3):330–4.PubMedCrossRefGoogle Scholar
  96. Sato S, Shirane R, Yoshimoto T. Evaluation of tethered cord syndrome associated with anorectal malformations. Neurosurgery. 1993;32:125–7.CrossRefGoogle Scholar
  97. Sistonen SJ, Koivusalo A, Lindahl H, Pukkala E, Rintala RJ, Pakarinen MP. Cancer after repair of esophageal atresia: population-based long-term follow-up. J Pediatr Surg. 2008;43:602–5.PubMedCrossRefGoogle Scholar
  98. Sistonen SJ, Helenius I, Peltonen J, Sarna S, Rintala RJ, Pakarinen MP. Natural history of spinal anomalies and scoliosis associated with esophageal atresia. Pediatrics. 2009;124:e1198–204.PubMedCrossRefGoogle Scholar
  99. Sistonen SJ, Koivusalo A, Nieminen U, Lindahl H, Lohi J, Kero M, Kärkkäinen PA, Färkkilä MA, Sarna S, Rintala RJ, Pakarinen MP. Esophageal morbidity and function in adults with repaired esophageal atresia with tracheoesophageal fistula: a population-based long-term follow-up. Ann Surg. 2010a;251:1167–73.PubMedCrossRefGoogle Scholar
  100. Sistonen S, Malmberg P, Malmström K, Haahtela T, Sarna S, Rintala RJ, Pakarinen MP. Repaired oesophageal atresia: respiratory morbidity and pulmonary function in adults. Eur Respir J. 2010b;36:1106–12.PubMedCrossRefGoogle Scholar
  101. Spoel M, Meeussen C, Gischler SJ, Hopb WJC, Bax NMA, Wijnen RMH, Tibboel D, de Jongste JC, IJsselstijn H. Respiratory morbidity and growth after open thoracotomy or thoracoscopic repair of esophageal atresia. J Pediatr Surg. 2012;47:1975–83.PubMedCrossRefGoogle Scholar
  102. Spoel M, van der Cammen-van Zijp M, Hop W, Tibboel D, de Jongste JC, IJsselstijn H. Lung function in young adults with congenital diaphragmatic hernia, a longitudinal evaluation. Pediatr Pulmonol. 2013;48:130–7.PubMedCrossRefGoogle Scholar
  103. Stege G, Fenton A, Jaffray B. Nihilism in the 1990s: the true mortality of congenital diaphragmatic hernia. Pediatrics. 2003;112:532–5.CrossRefGoogle Scholar
  104. Stephens FD, Smith ED. Ano-rectal malformations in children. Chicago: Year Book Medical Publishers; 1971.Google Scholar
  105. Stephens FD, Smith ED. Classification, identification and assessment of surgical treatment of anorectal anomalies. Pediatr Surg Int. 1986;1:200–5.CrossRefGoogle Scholar
  106. Steven M, Fyfe AHB, Raine PAM, Watt I. Esophageal adenocarcinoma: a long-term complication of congenital diaphragmatic hernia? J Pediatr Surg. 2007;42:E1–3.PubMedCrossRefGoogle Scholar
  107. Taskinen S, Valanne L, Rintala R. Effect of spinal cord abnormalities on the function of the lower urinary tract in patients with anorectal abnormalities. J Urol. 2002;168:1147–9.PubMedCrossRefGoogle Scholar
  108. Taylor I, Duthie HL, Zachary RB. Anal continence following surgery for imperforate anus. J Pediatr Surg. 1973;8:497–503.PubMedCrossRefGoogle Scholar
  109. Templeton JM, Ditesheim JA. High imperforate anus – quantitative result of long-term fecal continence. J Pediatr Surg. 1985;20:645–52.PubMedCrossRefGoogle Scholar
  110. Trusler GA, Wilkinson RH. Imperforate anus: a review of 147 cases. Can J Surg. 1962;5:269–77.PubMedGoogle Scholar
  111. Tuuha SE, Aziz D, Drake J, et al. Is surgery necessary for asymptomatic tethered cord in anorectal malformation patients? J Pediatr Surg. 2004;39:773–7.PubMedCrossRefGoogle Scholar
  112. van den Hout L, Reiss I, Felix JF, Hop WC, Lally PA, Lally KP, Tibboel D. Risk factors for chronic lung disease and mortality in newborns with congenital diaphragmatic hernia. Neonatology. 2010;98:370–80.CrossRefGoogle Scholar
  113. Vanamo K, Rintala RJ, Sovijärvi A, Jääskeläinen J, Lindahl H, Louhimo I. Long-term pulmonary sequelae in survivors of congenital diaphragmatic defects. J Pediatr Surg. 1996a;131:1096–100.CrossRefGoogle Scholar
  114. Vanamo K, Rintala RJ, Lindahl H, Louhimo I. Long-term gastrointestinal morbidity in patients with congenital diaphragmatic defects. J Pediatr Surg. 1996b;31:551–4.PubMedCrossRefGoogle Scholar
  115. Vanamo K, Peltonen J, Rintala R, Lindahl H, Jääskeläinen J, Louhimo I. Chest wall and spinal deformities in adults with congenital diaphragmatic defects. J Pediatr Surg. 1996c;31:851–4.PubMedCrossRefGoogle Scholar
  116. Varni JM, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:43–58.PubMedPubMedCentralCrossRefGoogle Scholar
  117. Waag KL, Loff S, Zahn K, Ali M, Hien S, Kratz M, Neff W, Schaffelder R, Schaible T. Congenital diaphragmatic hernia: a modern day approach. Semin Pediatr Surg. 2008;17:244–54.PubMedCrossRefGoogle Scholar
  118. Wales PW, de Silva N, Kim J, Lecce L, To T, Moore A. Neonatal short bowel syndrome: population-based estimates of incidence and mortality rates. J Pediatr Surg. 2004;39:690–5.PubMedCrossRefGoogle Scholar
  119. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30:473–83.PubMedPubMedCentralCrossRefGoogle Scholar
  120. Warne SA, Wilcox DT, Creichton S, et al. Long term gynecological outcome of patients with persistent cloaca. J Urol. 2003;170:1493–6.PubMedCrossRefGoogle Scholar
  121. Wildhaber BE, Teitelbaum DH, Coran AG. Total colonic Hirschsprung’s disease: a 28-year experience. J Pediatr Surg. 2005;40:203–7.PubMedCrossRefGoogle Scholar
  122. Yeung CK, Kiely EM. Low anorectal anomalies: a critical appraisal. Pediatr Surg Int. 1991;6:333–5.Google Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2020

Authors and Affiliations

  • Risto J. Rintala
    • 1
    Email author
  • Mikko P. Pakarinen
    • 1
  • Antti Koivusalo
    • 1
  1. 1.Department of Pediatric SurgeryChildren’s Hospital, Helsinki University Central Hospital, University of HelsinkiHelsinkiFinland

Personalised recommendations