Children and families we serve

Presence of a chronic, complex or life-threatening illness/condition

AND

One or more of the following:

• Prolonged hospitalization for more than three weeks
• Concerns regarding use of medical nutrition/hydration in cognitively impaired, seriously ill or dying patients
• New diagnosis of life-limiting or life-threatening disease
• Three or more hospitalizations within six months with increasing length of stay
• Difficult pain or symptom management
• Patient, family or physician uncertainty regarding prognosis
• LET (limited emergency treatment) order
• Complex care coordination
• Need for hospice resource utilization

Presence of malignant disease with any one of the following:

• Progressive metastatic cancer
• Bone marrow or stem cell transplant
• Diffuse intrinsic pontine glioma
• Stage IV neuroblastoma
• Relapsed malignant disease following stem cell or bone marrow transplant
• Any newly diagnosed malignant disease with a survival rate of less than 40 percent with current therapies
• Any relapsed malignant disease
• Metastatic solid tumors

Presence of compromised pulmonary status with any one of the following:

• Patients with CF considering lung transplant
• Patients with CF with lung function less than 30 percent
• Patients with CF with vent dependence or those ineligible for lung transplant
• Bronchiolotis obliterans
• Patients with CF pain, dyspnea or other symptoms who would benefit from symptom management
• Central hypoventilation syndromes
• Patients who are chronically ventilator dependent

Presence of any of the following:

• Trisomy 13, 15, 18
• Asphyxiating thoracic dystrophy
• Severe forms of osteogenesis imperfecta (type 3 or 4)
• Potter syndrome
• Epidermolysis bullosa
• Rett’s syndrome

Presence of at least one of the following:

• Progressive neurodegenerative conditions
• Muscular dystrophy
• Spinal muscular atrophy
• Severe traumatic brain injury
• Batten disease
• Metachromatic leukodystrophy or adrenoleukodystrophy
• Brain reduction syndromes:
  • Anencephaly
  • Hydranencephaly
  • Lissencephaly
  • Severe schizencephaly
• Static encephalopathy
• Cerebral palsy with co-morbidities
• Severe neural tube defects

Presence of any one of the following:

• Krabbe’s disease
• Hunter’s or Hurler’s disease
• Niemann-Pick disease
• Menke’s disease
• Pompe Disease
• Sanfilippo syndrome
• Tay-Sachs disease
• Fabry’s disease
• Sandoff’s disease
• Severe mitochondrial disorder
• Severe metabolic disorders for which bone marrow transplant is a therapeutic consideration

Presence of one of the following:

• HIV/AIDS resistant to antiretrovirals
• Severe combined immune deficiency
• Congenital CMV or toxo with neurological sequelae
• Severe encephalitis
• Severe immunodeficiency syndromes for which bone marrow transplant is a consideration

Presence of one of the following:

• Thanatophoric dwarfism
• Severe progressive scoliosis with comorbidities
• Renal recommendations

Presence of one of the following:

• Neonatal polycystic kidney
• Renal failure, not transplant candidate

Presence of chronic gastrointestinal dysfunction with one of the following:

• Multi-visceral organ transplant under consideration
• Biliary atresia
• Total aganglionosis of colon
• Progressive hepatic or uremic encephalopathy
• Feeding tube under consideration for any neurological condition
• Long-segment Hirshsprung’s
• Short-gut syndrome with TPN dependence

Presence of one of the following:

• Extreme prematurity with concomitant severe BPD, Grade IV intraventricular hemorrhage
• Severe birth asphyxia
• Hypoxic ischemic encephalopathy (moderate to severe)
• Extreme low birth weight infants
• Spina bifida

Presence of one of the following:

• Single ventricle cardiac physiology
• Severe pulmonary hypertension
• Ebstein’s anomaly
• Eisenmanger’s syndrome
• Cardiomyopathy: hypertrophic or severe dilated
• Pulmonary atresia (especially if associated with hypoplastic pulmonary arteries)
• Ongoing discussion of cardiac transplant
• Combination of cardiac diagnosis with underlying neurologic or chromosomal diagnosis
• ECMO candidate
• Severe myocarditis

Presence of one of the following:

• Prolonged or failed attempt to wean mechanical ventilation
• Multi-organ system failure
• Compassionate extubation
• Severe head injury following non-accidental or accidental trauma
• Irreversible brain injury that will impact functional status
• Immersion injury