The Critical Care, Anesthesia, and Perioperative Extension (CAPE) Program is a comprehensive and longitudinal care practice group for children with significant special health care needs, technology dependence and medical complexities. Services include consultation and support to families and institutions who are considering homecare of ventilator assisted children, long-term coordination of care including home visits, and perioperative consultation and planning around critical care recovery and rehabilitation. Transitional care, coordination with community services, and education out-reach are also offered to improve the quality of life for these children and their families.

Health services research efforts to date have focus on extensive evaluation of health-related quality of life, impact on family, clinical outcomes, care models and resource utilization for the cohort of children enrolled in the Critical Care, Anesthesia, Perioperative Extension (CAPE) and Home Ventilation Program, which I established in 2007. Partnering with colleagues in other disciplines, I have pursued clinical investigation for cohorts of children with chronic respiratory failure, including multi-institutional therapeutic trials in spinal muscular atrophy, nutritional assessment and provision in chronic illness, and preliminary tracheal microbiome studies. In 2017, I established the Chronic Critical Illness and Long-term Ventilation subgroup within the Pediatric Acute Lung Injury and Sepsis Investigators (PALISI).


I am a pediatric critical care physician with a special interest in children with chronic technology dependence. Through research, clinical interventions, and teaching, I have extended critical care services beyond the confines of the intensive care unit to optimize outcomes, quality of care, and resource utilization for these children and their families. My clinical background and training reflect a consistent interest in the continuum of acute and chronic pediatric illness. After completing pediatric training, I pursued an extended critical care fellowship to allow for additional clinical experience as a staff physician at a pediatric rehabilitation center as well as in the complex care services at Boston Medical Center and Boston Children’s Hospital (BCH). My health services and clinical research efforts focus on the interface between critical care services and children with chronic respiratory insufficiency and other complex special heath care needs. After completing general pediatrics training, I pursued and published the first descriptive study of children with neurodevelopmental disabilities in the pediatric intensive care (ICU) setting. My qualitative needs assessment study for the parents of children with disabilities in the ICU was published in Critical Care Medicine, one of the premier journals in our field. Findings informed the development of a year-long curriculum in a local Program to Enhance Relational and Communications Skills (PERCS).


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  1. Discharge Practices for Children with Home Mechanical Ventilation across the United States. Key-Informant Perspectives. Ann Am Thorac Soc. 2020 11; 17(11):1424-1430. View abstract
  2. Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives. Pediatr Pulmonol. 2020 12; 55(12):3465-3476. View abstract
  3. Patient and caregiver experiences at a Multidisciplinary Tracheostomy Clinic. Int J Pediatr Otorhinolaryngol. 2020 Oct; 137:110250. View abstract
  4. "This Is How Hard It Is". Family Experience of Hospital-to-Home Transition with a Tracheostomy. Ann Am Thorac Soc. 2020 07; 17(7):860-868. View abstract
  5. Ethical decision-making for children with neuromuscular disorders in the COVID-19 crisis. Neurology. 2020 08 11; 95(6):260-265. View abstract
  6. Readmission drivers for children with medical complexity: Home nursing shortages cause health crises. Pediatr Pulmonol. 2020 06; 55(6):1474-1480. View abstract
  7. X-linked myotubular myopathy and pulmonary blebs: Not just a muscle disorder. Muscle Nerve. 2019 12; 60(6):E36-E38. View abstract
  8. Mortality and respiratory support in X-linked myotubular myopathy: a RECENSUS retrospective analysis. Arch Dis Child. 2020 04; 105(4):332-338. View abstract
  9. Bridging the Stressful Gap Between ICU and Home: Medical Simulation for Pediatric Patients and Their Families. Pediatr Crit Care Med. 2019 04; 20(4):e221-e224. View abstract
  10. Pre-Nusinersen Hospitalization Costs of Children With Spinal Muscular Atrophy. Pediatr Neurol. 2019 03; 92:3-5. View abstract
  11. Pediatric patients with home mechanical ventilation: The health services landscape. Pediatr Pulmonol. 2019 01; 54(1):40-46. View abstract
  12. Tracheal Microbiota in Patients With a Tracheostomy Before, During and After an Acute Respiratory Infection. Pediatr Infect Dis J. 2018 11; 37(11):e269-e271. View abstract
  13. Pediatric Specialty Care Model for Management of Chronic Respiratory Failure: Cost and Savings Implications and Misalignment With Payment Models. Pediatr Crit Care Med. 2018 05; 19(5):412-420. View abstract
  14. Comprehensive nutritional and metabolic assessment in patients with spinal muscular atrophy: Opportunity for an individualized approach. Neuromuscul Disord. 2018 06; 28(6):512-519. View abstract
  15. Ethical Challenges Confronted When Providing Nusinersen Treatment for Spinal Muscular Atrophy. JAMA Pediatr. 2018 Feb 01; 172(2):188-192. View abstract
  16. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord. 2018 02; 28(2):103-115. View abstract
  17. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord. 2018 03; 28(3):197-207. View abstract
  18. Leveraging pediatric PROMIS item banks to assess physical functioning in children at risk for severe functional loss. J Patient Rep Outcomes. 2017; 1(1):10. View abstract
  19. The temporal dynamics of the tracheal microbiome in tracheostomised patients with and without lower respiratory infections. PLoS One. 2017; 12(8):e0182520. View abstract
  20. Understanding the Relationship Between Child Health-Related Quality of Life and Parent Emotional Functioning in Pediatric Hematopoietic Stem Cell Transplant. J Pediatr Psychol. 2017 08 01; 42(7):804-814. View abstract
  21. Predicting Health Care Utilization for Children With Respiratory Insufficiency Using Parent-Proxy Ratings of Children's Health-Related Quality of Life. J Pediatr Health Care. 2017 Nov - Dec; 31(6):654-662. View abstract
  22. The Impact on Family of Pediatric Chronic Respiratory Failure in the Home. J Pediatr. 2016 08; 175:40-6. View abstract
  23. Chronic respiratory failure: Utilization of a pediatric specialty integrated care program. Healthc (Amst). 2017 Mar; 5(1-2):23-28. View abstract
  24. Two-year mortality, complications, and healthcare use in children with medicaid following tracheostomy. Laryngoscope. 2016 11; 126(11):2611-2617. View abstract
  25. Nutritional Status and Nutrient Intake Challenges in Children With Spinal Muscular Atrophy. Pediatr Neurol. 2016 Apr; 57:80-3. View abstract
  26. Evidence-based guideline summary: Evaluation, diagnosis, and management of congenital muscular dystrophy: Report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Issues Review Panel of the American Association of Neuromuscular & Electrodiagnostic Medicine. Neurology. 2015 Oct 20; 85(16):1432. View abstract
  27. Author response. Neurology. 2015 Oct 20; 85(16):1432-3. View abstract
  28. Impact of Individualized Diet Intervention on Body Composition and Respiratory Variables in Children With Respiratory Insufficiency: A Pilot Intervention Study. Pediatr Crit Care Med. 2015 Jul; 16(6):e157-64. View abstract
  29. Evidence-based guideline summary: evaluation, diagnosis, and management of congenital muscular dystrophy: Report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Issues Review Panel of the American Association of Neuromuscular & Electrodiagnostic Medicine. Neurology. 2015 Mar 31; 84(13):1369-78. View abstract
  30. Metabolic assessment and individualized nutrition in children dependent on mechanical ventilation at home. J Pediatr. 2015 Feb; 166(2):350-7. View abstract
  31. Trial of telemedicine for patients on home ventilator support: feasibility, confidence in clinical management and use in medical decision-making. J Telemed Telecare. 2014 Dec; 20(8):441-9. View abstract
  32. Current applications of metabolic monitoring in the pediatric intensive care unit. Nutr Clin Pract. 2014 Jun; 29(3):338-47. View abstract
  33. Family-centered assessment and function for children with chronic mechanical respiratory support. J Pediatr Health Care. 2014 Jul-Aug; 28(4):295-304. View abstract
  34. Long-term ventilation: charting a pathway home. Arch Dis Child. 2013 Sep; 98(9):653. View abstract
  35. Pediatric neurocritical care: a neurology consultation model and implication for education and training. Pediatr Neurol. 2013 Mar; 48(3):206-11. View abstract
  36. Chronic conditions among children admitted to U.S. pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay*. Crit Care Med. 2012 Jul; 40(7):2196-203. View abstract
  37. End-of-life discussions and advance care planning for children on long-term assisted ventilation with life-limiting conditions. J Palliat Care. 2012; 28(1):21-7. View abstract
  38. Stretched and sheared microcatheter retained after onyx embolization of infantile myofibromatosis. Interv Neuroradiol. 2011 Jun; 17(2):261-6. View abstract
  39. Pediatric resident attitudes toward caring for children with severe disabilities. Am J Phys Med Rehabil. 2010 Sep; 89(9):765-71. View abstract
  40. Patient characteristics associated with in-hospital mortality in children following tracheotomy. Arch Dis Child. 2010 Sep; 95(9):703-10. View abstract
  41. Predictors of clinical outcomes and hospital resource use of children after tracheotomy. Pediatrics. 2009 Aug; 124(2):563-72. View abstract
  42. Anesthesia and perioperative medical management of children with spinal muscular atrophy. Paediatr Anaesth. 2009 Nov; 19(11):1054-63. View abstract
  43. Experiencing the pediatric intensive care unit: perspective from parents of children with severe antecedent disabilities. Crit Care Med. 2009 Jun; 37(6):2064-70. View abstract
  44. Successful and safe delivery of anesthesia and perioperative care for children with complex special health care needs. J Clin Anesth. 2009 May; 21(3):165-72. View abstract
  45. Medicine and children with special health care needs: conflict with the cult of cure. J Dev Behav Pediatr. 2008 Aug; 29(4):309-10. View abstract
  46. Clinical Outcomes and Hospital Use of Children Following Tracheostomy. Pediatric Academic Societies. 2008. View abstract
  47. Included but isolated: early intervention programmes provision for children and families with chronic respiratory support needs. Child Care Health Dev. 2008 May; 34(3):373-9. View abstract
  48. Specialty services for children with special health care needs: supplement not supplant the medical home. Arch Dis Child. 2008 Jan; 93(1):2-4. View abstract
  49. Chronic ventilator need in the community: a 2005 pediatric census of Massachusetts. Pediatrics. 2007 Jun; 119(6):e1280-7. View abstract
  50. Gastric outlet obstruction in an infant: lactobezoar. Am J Emerg Med. 2007 Jan; 25(1):98-9. View abstract
  51. Weaning children from mechanical ventilation in a post-acute care setting. Pediatr Rehabil. 2006 Oct-Dec; 9(4):365-72. View abstract
  52. The informed patient (column - Laura Landro): Pediatric hospitals teach doctors ways to convey tragic news. Cited in article. Wall Street Journal. 2006. View abstract
  53. Resident Attitudes Toward Caring for Children with Severe Disabilities. 2006. View abstract
  54. Acute respiratory distress syndrome in children with severe motor and intellectual disabilities. Brain Dev. 2006 Jun; 28(5):342. View abstract
  55. Research. Oxford Textbook of Palliative Care for Children, Goldman A, Hain R, Liben S (eds). 2006; 615-647. View abstract
  56. Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr. 2005 Oct; 26(5):361-5. View abstract
  57. An opportunity: critical care beyond the intensive care unit. Pediatr Crit Care Med. 2005 May; 6(3):327-8. View abstract
  58. Jading. Pediatr Crit Care Med. 2005 Jan; 6(1):93; author reply 93. View abstract
  59. Inpatient pediatric pulmonary rehabilitation: development of a minimum data set. Advance for Directors in Rehabilitation. 2005; 14(2):57-68. View abstract
  60. Congenital neurodevelopmental diagnoses and an intensive care unit: defining a population. Pediatr Crit Care Med. 2004 Jul; 5(4):321-8. View abstract
  61. Outcome rating scales for pediatric head injury. J Intensive Care Med. 2004 Jul-Aug; 19(4):205-19. View abstract
  62. Developing a pediatric pulmonary multidisciplinary data set: meeting everyone's needs, clinician, patient, and researcher. 2004. View abstract
  63. Evidence-based medicine, predictive model review of Robertson CMT, Joffe AR, Moore AJ, Watt JM. Neurodevelopmental outcome of young pediatric intensive care survivors of serious brain injury. (Pediatric Critical Care Medicine 2002; 3(4):345-350) http://pedsccm.wustl.edu/EBJournal_club.html. 2003. View abstract
  64. Measuring the health status of pediatric ICU survivors. Surviving Intensive Care. 2003; 107-115. View abstract
  65. Evidence-based medicine, predictive models review of Hatherill M, McIntyre AG, Wattie M, Murdoch IA. Early hyperlactatemia in critically ill children. (Intensive Care Medicine 2000; 26:314-318) http://pedsccm.wustl.edu/EBJournal_club.html. 2001. View abstract
  66. Evidence-based medicine, quality of life review of Sheridan RL et al. Longterm outcomes of children surviving massive burns (JAMA 2000; 283:69-73) http://pedsccm.wustl.edu/EBJournal_club.html. 2001. View abstract
  67. A pain in the heel: sneaker puncture wounds. Infectious Diseases in Children. 1999; 12(2):32. View abstract
  68. Advances in pediatric neurosurgery - surgical management of epileptic surgery. Headlines. 1993; 12-14. View abstract