Conditions That Can Require Tube Feeding in Children

So many parents have heard from friends, family, strangers that they don’t understand why children need to be tube fed. They haven’t heard of medical reasons that would necessitate it. Well, here is the list of medical conditions that can lead to feeding difficulties that can be severe enough to require tube feeding. The conditions are varied, and many of them aren’t visible. There is often a lengthy diagnostic process and children can go undiagnosed for years.

About this List

  • There is overlap. Children can have multiple conditions which contribute to tube feeding.
  • The classification headings aren’t carved into stone. A number of conditions could fit into multiple categories. Many conditions have a genetic component and many conditions cause dysmotility, for example.
  • Hundreds of parents and caregivers contributed to this list on the Feeding Tube Awareness Facebook page. Each condition was then reviewed to make sure that it was linked with significant feeding difficulties. The list was also reviewed by a Nurse Practitioner specializing in Pediatric Gastroenterology and Nutrition.
  • While this list is very comprehensive, we are certain that it is not complete. If you have a child that has a condition that isn’t on this list, please contact us.

Chromosome Disorders and Genetic Conditions

11q14.1- q23.2 Deletion
13q Deletion
14q24.2 q32.33q Duplication
14q32 Deletion
15q13.3 Microdeletion Syndrome
16p11.2 Microdeletion
16p11.2 Microduplication
16p13.11 Duplication
16p13.3 Duplication Syndrome
16q22.1 Deletion
18p Syndrome
18q Deletion
1p35.1 Duplication
1p36 Deletion
1q21.1 Duplication
1q21.1 Microdeletion
20p13 Duplication
21q21.1 Duplication
2p23.3-25.1 Deletion
2q24.3 Duplication
2q32 Microdeletion
2q37 Deletion Syndrome
3p21.1 Microdeletion
4q Deletion Syndrome
6q24.1-25.2 Deletion
6q25.2-25.3 Deletion
6q25.3q Microdeletion
7q21.1-7q31 Deletion
Alagille Syndrome
Alexander’s Disease
ALG13 Mutation
Alfi’s Syndrome
Allan Herdon Dudley Syndrome
Angelman Syndrome
Antley-Bixler Syndrome
Barth Syndrome
Bartter Syndrome
Beckwith-Wiedemann Syndrome
Borjeson-Forssman-Lehmann Syndrome
Cardiofaciocutaneous (CFC) Syndrome
CDKL5 Disorder
CHARGE Syndrome
Chrondodyplasia Punctata
Cockayne Syndrome
Coffin Siris Syndrome
Congenital Disorder of Glycosylation

Congenital Fiber Type Disproportion
Congenital Myotonic Dystrophy
Cornelia de Lange Syndrome
Costello Syndrome
Cri du Chat
Denys-Drash Syndrome
DiGeorge Syndrome
DNA Ligase IV Deficiency Syndrome (LIG 4)
Down Syndrome (Trisomy 21)
Dubowitz Syndrome
Edward’s Syndrome
Epidermolysis Bullosa
Fanconi Anemia
Fibromatosis Hyaline
FOXP2 Gene Mutation
Fragile X Syndrome
Freeman-Sheldon Syndrome
Gauchers Disease
GM1 Gangliosidosis
Hunter Syndrome (MPS II)
Jacobsen Syndrome
Joubert Syndrome
Kabuki Syndrome
Kleefstra Syndrome
Klinefelter’s Syndrome
Koolen de Vries Syndrome
L1CAM Mutation (X Linked Hydrocephalus)
Macrocephaly-Capillary Malformation Syndrome
Marshall Smith Syndrome
McCune Albright Syndrome
MECP2 Duplication Syndrome
Microcephalic Osteodysplastic Primordial Dwarfism Type 1
Miller Deiker Syndrome
Moebius Syndrome
Mosaic Monosomy 21
Mosaic Trisomy 18
Mosaic Trisomy 22
Mosaic Trisomy 9
Mowat-Galloway Syndrome
Nager Syndreome
Noonan Syndrome
Norrie Disease
Opitz G/BBB Syndrome
Pallister-Hall Syndrome
Partial Trisomy 13
Partial Trisomy 18

Partial Trisomy 1q
Partial Trisomy 7
Partial Trisomy 9q
Phelan-McDermid Syndrome
Pitt-Hopkins Syndrome
Prader-Willi Syndrome
Rett Syndrome
Riley Day Syndrome
Ring Chromosome 14
Ring Chromosome 18
Ring Chromosome 21
Ring Chromosome 6
Ring Chromosome 9
Rubenstein-Taybi Syndrome
Russell-Silver Syndrome
Sandhoff Disease
Say Barber Biesecker Young-Simpson Ohdo Syndrome
Shwachman-Diamond Syndrome
Smith Magenis Syndrome
Smith-Lemli-Opitz Syndrome
Sotos Syndrome
SOX2 Mutation or Deletion
Static Encephalopathy
Stickler Syndrome
Tay Sachs Disease
Tetrasomy 9p
Translocation 5;8 (partial loss 5q33.3/partial gain 8p21.1-23.2
Translocation Chromosome 22
Trichohepatoenteric Syndrome
Trisomy 10
Trisomy 13
Trisomy 14
Trisomy 17
Trisomy 18
Trisomy 4p
Trisomy 5q
Trisomy 9
Turner Syndrome
Velo-cardio-facial Syndrome
Waardenburg’s Syndrome Type 4
Wiedemann-Steiner Syndrome
Williams Syndrome
Wolf-Hirschhorn Syndrome
Worster Drought Syndrome
Xq28 Duplication
Zellweger Syndrome Spectrum/Peroxisomal Biogenesis Disorders

Neurological, Cranial, and Seizure Disorders

Anoxic Brain Injury
Arachnoid Brain Cyst
Bilateral Open Opercular Syndrome
Brain Tumor
Cerebal Atrophy
Cerebellar Hypoplasia
Cerebral Cavernous Malformation
Chiari Malformation
Corpus Callosum Disorders
Cortical Dysplasia
Cranial Nerve Damage
Dandy Walker Malformation
Delayed Myelination
Dravet Syndrome
Electrical Status Epilepticus in Sleep (ESES)

FoxG1 Syndrome
Hypothalamic Malfunction
Hypoxic Ischaemic Encelpathy (HIE)
Infantile Spasms
Lennox-Gestaut Syndrome
Loeys-Dietz Syndrome
Malignant Migrating Partial Epilepsy in Infancy
Metachromatic Leukodystrophy
Multicystic Encephalomalacia
Occulofacialcardiodental Syndrome

Ohtahara Syndrome
Perinatal Stroke
Periventricular Leukomalacia (PVL)
Pontine Tegmental Cap Dysplasia
Pontocerebellar Hypoplasia
Septo Optic Dysplasia
Spastic Diplegia
Spina Bifida
Traumatic Brain Injury
West Syndrome

Connective Tissue Disorders

Ehlers-Danlos Syndrome

Mixed Connective Tissue Disease

Craniofacial Conditions

Bronchial-oto-facial Syndrome
Bulbar Palsy

Cervical Lymphangioma
Pfeiffer Syndrome

Treacher Collins Syndrome

Digestive and Gastrointestinal Conditions

Abdominal Migraines
Colon Hyperganglionosis
Crohn’s Disease
Cyclical Vomiting Syndrome (CVS)

Functional Dyspepsia
Gastroesophageal Reflux Disease (GERD)
Hirschsprung’s Disease
Necrotizing Entercolitis (NEC)

Rumination Syndrome
Sandifer Syndrome
Ulcerative Colitis
Visceral Hypersensitivity


Alpers’ Disease
Canavan Disease
Cystic Fibrosis

Diabetes Insipidous
Leigh’s Disease
Lynch Syndrome
Menkes Disease

Mitochondrial Disease
Muscle Eye Brain Disease
Niemann-Pick Diseases
Pelizaeus-Merzbacher Disease

Endocrine Disorders

Growth Hormone Deficiency
Primary IGF-1 Deficiency



Heart Conditions

Atrial Septal Defect (ASD)
Atrioventricular Canal Defects
Congenital Heart Defects
Dilated Cardiomyopathy
Heterotaxy with Asplenia
Hypoplastic Left Heart Syndrome

Hypoplastic Right Heart Syndrome
Patent Ductus Arteriosis (PDA)
Pulmonary Vein Stenosis
Shone’s Syndrome
Tetralogy of Fallot with Pulmonary Atresia (TOF/PA)/ with Major Aortopulmonary Collateral Artery (MAPCA)

Transposition of the Great Arteries (TGA)
Tricuspid Atresia
Truncus Arteriosus
Ventricular Septal Defect (VSD)

Illness Related

Cytomegalovirus (CMV)

Valproate Syndrome

Immunological Conditions

Common Variable Immunodeficiency (CVID)
Eosinophil-associated Gastrointestinal Disorders (EGID)
Eosinophilic Esophagitis (EoE)

Eosinophilic Gastritis (EG)
Eosinophilic Gastroenteritis (EGE)
Eosinophilic Colitis (EC)
Hypereosinophilic Syndrome (HES)

Food Protein Intolerance Enterocolitis Syndrome (FPIES)
IgA Deficiency (complete)
Severe Food Allergies

Liver Conditions

Autoimmune Hepatitis

Biliary Atresia

Caroli Disease

Metabolic Conditions

Adrenal Hypoplasia
Argininosuccinic Aciduria
Congenital Sucrase-Isomaltase Deficiency
Entrokionase Deficiency
Glucose Transporter Deficiency Syndrome (Glut 1)
Glutaric Acidemia
Glycerol Kinase Deficiency
Glycogen Storage Disease

Hereditary Fructose Intolerance
Long-chain-Hydroxy Acyl-CoA Dehydrogenase Deficiency and Trifunctional Protein Deficiency (LCHAD/TFP)
Multiple Acyl-CoA Dehydrogenase Deficiency (MADD)
Medium Chain Acyl CoA Dehydrogenase Deficiency (MCAD)
Methylmalonic Acidemia
MPS-III Sanfilippo Syndrome
Nonketotic Hyperglycinemia (NKH)
Ornithine Transcarbamylase Deficiency (OTCD)

Pompe Disease
Propionic Acidemia
Pseudohypoaldosteronism Recessive Type 1 MTOD
Short-Chain Acyl-CoA Dehydrogenase Deficiency (SCAD)
Short Chain Hydroxy Acyl-CoA Dehydrogenase Deficiency (SCHAD)
Very Long Chain Acyl-CoA Dehydrogenase Deficiency (VCLADD)

Motility Disorders

Chronic Diarrhea
Chronic Intestinal Pseudo Obstruction

Colonic Inertia
Dumping Syndrome

Encopresis with overflow incontinence

Neuromuscular Disorders

Central Core Disease
Cerebral Palsy
Congenital Myopathy
Congenital Myotonic Dystrophy
Congenital Myasthenic Gravis
Congenital Myasthenic Syndrome
Duschenne Muscular Dystrophy

Congenital Fiber-type Disproportion
Multiminicore Disease
Myasthenic Syndrome
Muscular Dystrophy

Myotubular Myopathy
Nemaline Myopathy
Spinal Muscular Atrophy (SMA)
Spinal Muscular Atrophy with Respiratory Distress (SMARD)

Pancreatic Conditions

Ideopathic Chronic Pancreatitis

Amylase Enzyme Deficiency

Peripheral or Central Nervous System

Dysautonomia/Autonomic Dysfunction
Myoelectrical Nerve Abnormality

Pelizeaus-Merzbacher Disease

Spielmeyer-Vogt-Sjogren-Batten Disease

Processing and Developmental Conditions


Pervasive Development Disorder – Not Otherwise Specified (PDD-NOS)

Sensory Processing Disorder

Pulmonary and Respiratory Conditions

ABCA3 Mutation
Bronchiolitis Obliterans
Bronchiolitis Obliterans with Organizing Pneumonia (BOOP)
Bronchopulmonary Dysplasia (BPD)
Chronic Lung Disease

Congenital Central Hypoventilation Syndrome
Lymphocytic Interstitial Pneumonia
Neuroendocrine Cell Hyperplasia (NEH)
Pulmonary Atresia
Pulmonary Hypertension
Pulmonary Hypoplasia

Pulmonary Interstitial GlycogenosisPulmonary Interstitial Glycogenosis
Restrictive Lung Disease
SP-B Deficiency
Surfactant Protein C Deficiency

Renal Conditions

Kidney Disease

Kidney Failure

Structural Conditions

Annular Pancreas
Arthrogryposis Multiplex Congenita (AMC)
Cerebro-costo-Mandibular Syndrome
Congenital Diaphragmatic Hernia
Choanal Atresia/Bilateral Choanal Atresia
Cleft Lip and Palate
Costo-Mandibular Syndrome
Duodenal Atresia

Goldenhar Syndrome
Hanhart Syndrome
Heterotaxy Syndrome
Hollow Visceral Myopathy
Infantile Myofibromatosis
Intestinal Malrotation
Lymphatic Malformation

Pierre-Robin Sequence
Pyloric Stenosis
Short Bowel Syndrome
Superior Mesenteric Artery Syndrome (SMAS)
Type IV Jejunal Atresia

Swallowing Disorders and Esophageal Conditions

Absent Swallow Reflex
Cricopharyngeal Achalasia
Esophageal Atresia (EA)
Esophageal Stricture

Hyperactive Gag Reflex
Laryngeal and Esophageal Vascular Malformations
Laryngeal Cleft
Laryngeal Nerve Damage
Oral Motor Disorders
Paralyzed Vocal Cord

Poor Suck Response (in newborns)
Severe Oral Aversion
Subglottonal Stenosis
Tracheoesophageal Fistula (TEF)
Tracheolaryngeal Cleft


Chemotherapy Treatment
Complications of Medical Procedures
Cytomegalovirus (CMV)

Fetal Alcohol Syndrome
Hydrops Fetalis
Organ Transplants

Shaken Baby Syndrome
Stroke (perinatal and non-perinatal)
Twins Anemia Polycythema Sequence (TAPS)