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
- You can sort the list. Click on the arrows to sort alphabetically or by type of condition.
- 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.
| Condition | Type |
|---|---|
| 1p35.1 Duplication | Genetic/Chromosomal |
| 1p36 Deletion | Genetic/Chromosomal |
| 1q21.1 Duplication | Genetic/Chromosomal |
| 1q21.1 Microdeletion | Genetic/Chromosomal |
| 1q24.2 + 1q23.2q24.1 Deletions | Genetic/Chromosomal |
| 2p23.3-25.1 Deletion | Genetic/Chromosomal |
| 2q24.3 Duplication | Genetic/Chromosomal |
| 2q32 Microdeletion | Genetic/Chromosomal |
| 2q37 Deletion Syndrome | Genetic/Chromosomal |
| 3p21.1 Microdeletion | Genetic/Chromosomal |
| 3q29 Microdeletion Syndrome | Genetic/Chromosomal |
| 4q Deletion Syndrome | Genetic/Chromosomal |
| 6q24.1-25.2 Deletion | Genetic/Chromosomal |
| 6q25.2-25.3 Deletion | Genetic/Chromosomal |
| 6q25.3q Microdeletion | Genetic/Chromosomal |
| 7q21.1-7q31 Deletion | Genetic/Chromosomal |
| 11q14.1- q23.2 Deletion | Genetic/Chromosomal |
| 13q Deletion | Genetic/Chromosomal |
| 14q21 | Genetic/Chromosomal |
| 14q24.2 q32.33q Duplication | Genetic/Chromosomal |
| 14q32 Deletion | Genetic/Chromosomal |
| 15q 11.2 BP1-BP2 Microdeletion Syndrome | Genetic/Chromosomal |
| 15q13.3 Microdeletion Syndrome | Genetic/Chromosomal |
| 16p11.2 Microdeletion | Genetic/Chromosomal |
| 16p11.2 Microduplication | Genetic/Chromosomal |
| 16p13.3 Duplication Syndrome | Genetic/Chromosomal |
| 16p13.11 Duplication | Genetic/Chromosomal |
| 16q22.1 Deletion | Genetic/Chromosomal |
| 18p Syndrome | Genetic/Chromosomal |
| 18q Deletion | Genetic/Chromosomal |
| 20p13 Duplication | Genetic/Chromosomal |
| 21q21.1 Duplication | Genetic/Chromosomal |
| ABCA3 Mutation | Respiratory |
| Abdominal Migraines | GI |
| Absent Swallow Reflex | Swallowing |
| Achalasia | Swallowing |
| Adrenal Hypoplasia | Metabolic |
| Alagille Syndrome | Genetic/Chromosomal |
| Alexander’s Disease | Genetic/Chromosomal |
| Alfi’s Syndrome | Genetic/Chromosomal |
| ALG13 Mutation | Genetic/Chromosomal |
| Allan Herdon Dudley Syndrome | Genetic/Chromosomal |
| Alpers’ Disease | Neurological |
| Alternating Hemiplegia of Childhood | Neurological |
| Amylase Enzyme Deficiency | Endocrine |
| Angelman Syndrome | Genetic/Chromosomal |
| Annular Pancreas | Structural |
| Anoxic Brain Injury | Neurological |
| Antley-Bixler Syndrome | Genetic/Chromosomal |
| Arachnoid Brain Cyst | Neurological |
| Argininosuccinate lyase deficiency | Metabolic |
| Argininosuccinic Aciduria | Metabolic |
| Arthrogryposis Multiplex Congenita (AMC) | Structural |
| Aspiration | Swallowing |
| Atrial Septal Defect (ASD) | Cardiology |
| Atrioventricular Canal Defects | Cardiology |
| Autism | Developmental |
| Autoimmune Hepatitis | GI |
| Avoidant/Restrictive Food Intake Disorder | Developmental |
| Barth Syndrome | Genetic/Chromosomal |
| Bartter Syndrome | Genetic/Chromosomal |
| Beckwith-Wiedemann Syndrome | Genetic/Chromosomal |
| Bilateral Open Opercular Syndrome | Craniofacial |
| Biliary Atresia | GI |
| Bohring-Opitz Syndrome | Genetic/Chromosomal |
| Borjeson-Forssman-Lehmann Syndrome | Genetic/Chromosomal |
| Brain Tumor | Neurological |
| Broncheomalacia | Respiratory |
| Bronchial-oto-facial Syndrome | Craniofacial |
| Bronchiolitis Obliterans | Respiratory |
| Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) | Respiratory |
| Bronchopulmonary Dysplasia (BPD) | Respiratory |
| Bulbar Palsy | Craniofacial |
| Canavan Disease | Genetic/Chromosomal |
| Cancer | Disease |
| Cardiofaciocutaneous (CFC) Syndrome | Genetic/Chromosomal |
| Caroli Disease | GI |
| CDKL5 Disorder | Genetic/Chromosomal |
| Celiac | Immune |
| Central Core Disease | Neuromuscular |
| Cerebal Atrophy | Neurological |
| Cerebellar Hypoplasia | Neurological |
| Cerebral Cavernous Malformation | Neurological |
| Cerebral Palsy | Neurological |
| Cerebro-costo-Mandibular Syndrome | Structural |
| Cervical Lymphangioma | Craniofacial |
| CHARGE Syndrome | Genetic/Chromosomal |
| Chemotherapy Treatment | Other |
| Chiari Malformation | Neurological |
| Choanal Atresia/Bilateral Choanal Atresia | Structural |
| Chrondodyplasia Punctata | Genetic/Chromosomal |
| Chronic Diarrhea | GI |
| Chronic Intestinal Pseudo Obstruction | GI |
| Chronic Lung Disease | Respiratory |
| Cleft Lip and Palate | Structural |
| Cockayne Syndrome | Genetic/Chromosomal |
| Coffin Siris Syndrome | Genetic/Chromosomal |
| Colon Hyperganglionosis | GI |
| Colonic Inertia | GI |
| Common Variable Immunodeficiency (CVID) | Immune |
| Complications of Medical Procedures | Other |
| Congenital Central Hypoventilation Syndrome | Respiratory |
| Congenital Diaphragmatic Hernia | Structural |
| Congenital Disorder of Glycosylation | Genetic/Chromosomal |
| Congenital Fiber Type Disproportion | Genetic/Chromosomal |
| Congenital Fiber-type Disproportion | Neuromuscular |
| Congenital Heart Defects | Cardiology |
| Congenital Lactase Deficiency | Genetic/Chromosomal |
| Congenital Myasthenic Gravis | Neuromuscular |
| Congenital Myasthenic Syndrome | Neuromuscular |
| Congenital Myopathy | Neuromuscular |
| Congenital Myotonic Dystrophy | Neuromuscular |
| Congenital Myotonic Dystrophy | Genetic/Chromosomal |
| Congenital Sucrase-Isomaltase Deficiency | Metabolic |
| Cornelia de Lange Syndrome | Genetic/Chromosomal |
| Corpus Callosum Disorders | Neurological |
| Cortical Dysplasia | Neurological |
| Costello Syndrome | Genetic/Chromosomal |
| Costo-Mandibular Syndrome | Structural |
| Cranial Nerve Damage | Neurological |
| Creatine Transporter Deficiency | Genetic/Chromosomal |
| Cri du Chat | Genetic/Chromosomal |
| Cricopharyngeal Achalasia | Swallowing |
| Crohn’s Disease | GI |
| Cyclical Vomiting Syndrome (CVS) | GI |
| Cystic Fibrosis | Genetic/Chromosomal |
| Cystinosis | Genetic/Chromosomal |
| Cytomegalovirus (CMV) | Other |
| Cytomegalovirus (CMV) | Other |
| Dandy Walker Malformation | Neurological |
| Delayed Myelination | Neurological |
| Denys-Drash Syndrome | Genetic/Chromosomal |
| Diabetes Insipidous | Other |
| DiGeorge Syndrome | Genetic/Chromosomal |
| Dilated Cardiomyopathy | Cardiology |
| DNA Ligase IV Deficiency Syndrome (LIG 4) | Genetic/Chromosomal |
| Down Syndrome (Trisomy 21) | Genetic/Chromosomal |
| Dravet Syndrome | Neurological |
| Dubowitz Syndrome | Genetic/Chromosomal |
| Dumping Syndrome | GI |
| Duodenal Atresia | Structural |
| Duschenne Muscular Dystrophy | Neuromuscular |
| Dysautonomia/Autonomic Dysfunction | Neurological |
| Dysphagia | Swallowing |
| Dystonia | Neuromuscular |
| Edward’s Syndrome | Genetic/Chromosomal |
| Ehlers-Danlos Syndrome | Connective Tissue |
| Electrical Status Epilepticus in Sleep (ESES) | Neurological |
| Encopresis with overflow incontinence | GI |
| Entrokionase Deficiency | Metabolic |
| Eosinophil-associated Gastrointestinal Disorders (EGID) | Immune |
| Eosinophilic Colitis (EC) | Immune |
| Eosinophilic Esophagitis (EoE) | Immune |
| Eosinophilic Gastritis (EG) | Immune |
| Eosinophilic Gastroenteritis (EGE) | Immune |
| Epidermolysis Bullosa | Genetic/Chromosomal |
| Esophageal Atresia (EA) | Swallowing |
| Esophageal Stricture | Swallowing |
| Exocrine Pancreatic Insufficiency | GI |
| Familial Dysautonomia | Genetic/Chromosomal |
| Fanconi Anemia | Genetic/Chromosomal |
| Fetal Alcohol Syndrome | Other |
| Fibromatosis Hyaline | Genetic/Chromosomal |
| Food Protein Intolerance Enterocolitis Syndrome (FPIES) | Immune |
| FoxG1 Syndrome | Neurological |
| FOXP2 Gene Mutation | Genetic/Chromosomal |
| Fragile X Syndrome | Genetic/Chromosomal |
| Freeman-Sheldon Syndrome | Genetic/Chromosomal |
| Functional Dyspepsia | GI |
| Gastrochisis | Structural |
| Gastroesophageal Reflux Disease (GERD) | GI |
| Gastroparesis | GI |
| Gauchers Disease | Genetic/Chromosomal |
| Glucose Transporter Deficiency Syndrome (Glut 1) | Metabolic |
| Glutaric Acidemia | Metabolic |
| Glycerol Kinase Deficiency | Metabolic |
| Glycogen Storage Disease | Metabolic |
| GM1 Gangliosidosis | Genetic/Chromosomal |
| Goldenhar Syndrome | Structural |
| Growth Hormone Deficiency | Endocrine |
| Hanhart Syndrome | Structural |
| Hereditary Fructose Intolerance | Metabolic |
| Heterotaxy Syndrome | Structural |
| Heterotaxy with Asplenia | Cardiology |
| Hirschsprung’s Disease | GI |
| Hollow Visceral Myopathy | Structural |
| Holoproscencephaly | Neurological |
| Hunter Syndrome (MPS II) | Genetic/Chromosomal |
| Hydranencephaly | Neurological |
| Hydrocephalus | Neurological |
| Hydrops Fetalis | Other |
| Hyperactive Gag Reflex | Swallowing |
| Hypereosinophilic Syndrome (HES) | Immune |
| Hyperinsulinism/Hypoglycemia | Endocrine |
| Hypoplastic Left Heart Syndrome | Cardiology |
| Hypoplastic Right Heart Syndrome | Cardiology |
| Hypothalamic Malfunction | Neurological |
| Hypoxic Ischaemic Encelpathy (HIE) | Neurological |
| Ideopathic Chronic Pancreatitis | Endocrine |
| IgA Deficiency (complete) | Immune |
| Immunodysregulation polyendocrinopathy enteropathy X-linked (IPEX) | Immune |
| Infantile Myofibromatosis | Structural |
| Infantile Spasms | Neurological |
| Intestinal Malrotation | Structural |
| Jacobsen Syndrome | Genetic/Chromosomal |
| Joubert Syndrome | Genetic/Chromosomal |
| Kabuki Syndrome | Genetic/Chromosomal |
| Kapur-Toriello | Genetic/Chromosomal |
| KBG Syndrome | Genetic/Chromosomal |
| Ketotic Hypoglycemia | Endocrine |
| Kidney Disease | Renal |
| Kidney Failure | Renal |
| Kleefstra Syndrome | Genetic/Chromosomal |
| Klinefelter’s Syndrome | Genetic/Chromosomal |
| Koolen de Vries Syndrome | Genetic/Chromosomal |
| L1CAM Mutation (X Linked Hydrocephalus) | Genetic/Chromosomal |
| Laryngeal and Esophageal Vascular Malformations | Swallowing |
| Laryngeal Cleft | Swallowing |
| Laryngeal Nerve Damage | Swallowing |
| Laryngomalacia | Swallowing |
| Leigh’s Disease | Neurological |
| Lennox-Gestaut Syndrome | Neurological |
| Leukodystrophy | Neurological |
| Lissencephaly/Micro-Lissencephaly | Neurological |
| Loeys-Dietz Syndrome | Neurological |
| Long-chain-Hydroxy Acyl-CoA Dehydrogenase Deficiency and Trifunctional Protein Deficiency (LCHAD/TFP) | Metabolic |
| Lymphatic Malformation | Structural |
| Lymphocytic Interstitial Pneumonia | Respiratory |
| Lynch Syndrome | Disease |
| Macrocephaly-Capillary Malformation Syndrome | Genetic/Chromosomal |
| Macroglossia | Structural |
| Major Aortopulmonary Collateral Artery (MAPCA) | Cardiology |
| Malignant Migrating Partial Epilepsy in Infancy | Neurological |
| Maple Syrup Urine Disease | Genetic/Chromosomal |
| Marshall Smith Syndrome | Genetic/Chromosomal |
| Mastocytosis | Immune |
| McCune Albright Syndrome | Genetic/Chromosomal |
| MECP2 Duplication Syndrome | Genetic/Chromosomal |
| Medium Chain Acyl CoA Dehydrogenase Deficiency (MCAD) | Metabolic |
| Menkes Disease | Genetic/Chromosomal |
| Metachromatic Leukodystrophy | Neurological |
| Methylmalonic Acidemia | Metabolic |
| Microcephalic Osteodysplastic Primordial Dwarfism Type 1 | Genetic/Chromosomal |
| Microcephaly | Neurological |
| Microgastria | Structural |
| Micrognathia | Structural |
| Miller Deiker Syndrome | Genetic/Chromosomal |
| Mitochondrial Disease | Genetic/Chromosomal |
| Mixed Connective Tissue Disease | Connective Tissue |
| Moebius Syndrome | Genetic/Chromosomal |
| Mosaic Monosomy 21 | Genetic/Chromosomal |
| Mosaic Trisomy 9 | Genetic/Chromosomal |
| Mosaic Trisomy 18 | Genetic/Chromosomal |
| Mosaic Trisomy 22 | Genetic/Chromosomal |
| Mowat-Galloway Syndrome | Genetic/Chromosomal |
| Moyamoya Disease | Structural |
| MPS-III Sanfilippo Syndrome | Metabolic |
| Multicystic Encephalomalacia | Neurological |
| Multiminicore Disease | Neuromuscular |
| Multiple Acyl-CoA Dehydrogenase Deficiency (MADD) | Metabolic |
| Muscle Eye Brain Disease | Neuromuscular |
| Muscular Dystrophy | Neuromuscular |
| Myasthenic Syndrome | Neuromuscular |
| Myocitis | Immune |
| Myoelectrical Nerve Abnormality | Neurological |
| Myotubular Myopathy | Neuromuscular |
| Nager Syndreome | Genetic/Chromosomal |
| Necrotizing Entercolitis (NEC) | GI |
| Nemaline Myopathy | Neuromuscular |
| Neuroendocrine Cell Hyperplasia (NEH) | Respiratory |
| Neurofibromatosis | Genetic/Chromosomal |
| Niemann-Pick Diseases | Genetic/Chromosomal |
| Nonketotic Hyperglycinemia (NKH) | Metabolic |
| Noonan Syndrome | Genetic/Chromosomal |
| Norrie Disease | Genetic/Chromosomal |
| Occulofacialcardiodental Syndrome | Craniofacial |
| Ohtahara Syndrome | Neurological |
| Omphalocele | Structural |
| Opitz G/BBB Syndrome | Genetic/Chromosomal |
| Oral Motor Disorders | Swallowing |
| Organ Transplants | Other |
| Ornithine Transcarbamylase Deficiency (OTCD) | Metabolic |
| Pachygyria | Neurological |
| Pallister-Hall Syndrome | Genetic/Chromosomal |
| Panhypopituitarism | Endocrine |
| Paralyzed Vocal Cord | Swallowing |
| Partial Trisomy 1q | Genetic/Chromosomal |
| Partial Trisomy 7 | Genetic/Chromosomal |
| Partial Trisomy 9q | Genetic/Chromosomal |
| Partial Trisomy 13 | Genetic/Chromosomal |
| Partial Trisomy 18 | Genetic/Chromosomal |
| Patent Ductus Arteriosis (PDA) | Cardiology |
| Pelizaeus-Merzbacher Disease | Neurological |
| Pelizeaus-Merzbacher Disease | Neurological |
| Perinatal Stroke | Neurological |
| Periventricular Leukomalacia (PVL) | Neurological |
| Pervasive Development Disorder – Not Otherwise Specified (PDD-NOS) | Developmental |
| Pfeiffer Syndrome | Craniofacial |
| Phelan-McDermid Syndrome | Genetic/Chromosomal |
| Pierre-Robin Sequence | Structural |
| Pitt-Hopkins Syndrome | Genetic/Chromosomal |
| Polymicrogyria/Polymicrogyriacephaly | Neurological |
| Pompe Disease | Metabolic |
| Pontine Tegmental Cap Dysplasia | Neurological |
| Pontocerebellar Hypoplasia | Neurological |
| Poor Suck Response (in newborns) | Swallowing |
| Porencephaly | Neurological |
| Prader-Willi Syndrome | Genetic/Chromosomal |
| Prematurity | Other |
| Primary IGF-1 Deficiency | Endocrine |
| Propionic Acidemia | Metabolic |
| Pseudohypoaldosteronism Recessive Type 1 MTOD | Metabolic |
| Pulmonary Atresia | Respiratory |
| Pulmonary Hypertension | Respiratory |
| Pulmonary Hypoplasia | Respiratory |
| Pulmonary Interstitial Glycogenosis | Respiratory |
| Pulmonary Vein Stenosis | Cardiology |
| Pyloric Stenosis | Structural |
| Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation (ROHHAD) | Neurological |
| Restrictive Lung Disease | Respiratory |
| Rett Syndrome | Genetic/Chromosomal |
| Riley Day Syndrome | Genetic/Chromosomal |
| Ring Chromosome 6 | Genetic/Chromosomal |
| Ring Chromosome 9 | Genetic/Chromosomal |
| Ring Chromosome 14 | Genetic/Chromosomal |
| Ring Chromosome 18 | Genetic/Chromosomal |
| Ring Chromosome 21 | Genetic/Chromosomal |
| Rubenstein-Taybi Syndrome | Genetic/Chromosomal |
| Rumination Syndrome | GI |
| Russell-Silver Syndrome | Genetic/Chromosomal |
| Sandhoff Disease | Genetic/Chromosomal |
| Sandifer Syndrome | GI |
| Say Barber Biesecker Young-Simpson Ohdo Syndrome | Genetic/Chromosomal |
| Schizencephaly | Neurological |
| Sensory Processing Disorder | Developmental |
| Septo Optic Dysplasia | Neurological |
| Severe Combined Immunodeficiency (SCID) | Immune |
| Severe Food Allergies | Immune |
| Severe Oral Aversion | Swallowing |
| Shaken Baby Syndrome | Other |
| Shone’s Syndrome | Cardiology |
| Short Bowel Syndrome | Structural |
| Short Chain Hydroxy Acyl-CoA Dehydrogenase Deficiency (SCHAD) | Metabolic |
| Short-Chain Acyl-CoA Dehydrogenase Deficiency (SCAD) | Metabolic |
| Shwachman-Diamond Syndrome | Genetic/Chromosomal |
| Smith Magenis Syndrome | Genetic/Chromosomal |
| Smith-Lemli-Opitz Syndrome | Genetic/Chromosomal |
| Sotos Syndrome | Genetic/Chromosomal |
| SOX2 Mutation or Deletion | Genetic/Chromosomal |
| SP-B Deficiency | Respiratory |
| Spastic Diplegia | Neurological |
| Spielmeyer-Vogt-Sjogren-Batten Disease | Neurological |
| Spina Bifida | Neurological |
| Spinal Muscular Atrophy (SMA) | Neuromuscular |
| Spinal Muscular Atrophy with Respiratory Distress (SMARD) | Neuromuscular |
| Static Encephalopathy | Genetic/Chromosomal |
| Stickler Syndrome | Genetic/Chromosomal |
| Stroke (perinatal and non-perinatal) | Other |
| Subglottonal Stenosis | Swallowing |
| Superior Mesenteric Artery Syndrome (SMAS) | Structural |
| Surfactant Protein C Deficiency | Respiratory |
| Tay Sachs Disease | Genetic/Chromosomal |
| Tetralogy of Fallot with Pulmonary Atresia (TOF/PA | Cardiology |
| Tetrasomy 9p | Genetic/Chromosomal |
| Tracheoesophageal Fistula (TEF) | Swallowing |
| Tracheolaryngeal Cleft | Swallowing |
| Tracheomalacia | Swallowing |
| Translocation 5;8 (partial loss 5q33.3/partial gain 8p21.1-23.2 | Genetic/Chromosomal |
| Translocation Chromosome 22 | Genetic/Chromosomal |
| Transposition of the Great Arteries (TGA) | Cardiology |
| Traumatic Brain Injury | Neurological |
| Treacher Collins Syndrome | Craniofacial |
| Trichohepatoenteric Syndrome | Genetic/Chromosomal |
| Trichothiodystrophy | Genetic/Chromosomal |
| Tricuspid Atresia | Cardiology |
| Trisomy 4p | Genetic/Chromosomal |
| Trisomy 5q | Genetic/Chromosomal |
| Trisomy 9 | Genetic/Chromosomal |
| Trisomy 10 | Genetic/Chromosomal |
| Trisomy 13 | Genetic/Chromosomal |
| Trisomy 14 | Genetic/Chromosomal |
| Trisomy 17 | Genetic/Chromosomal |
| Trisomy 18 | Genetic/Chromosomal |
| Truncus Arteriosus | Cardiology |
| Turner Syndrome | Genetic/Chromosomal |
| Twins Anemia Polycythema Sequence (TAPS) | Other |
| Type IV Jejunal Atresia | Structural |
| Ulcerative Colitis | GI |
| VACTERL/VATER Association | Structural |
| Valproate Syndrome | Other |
| Velo-cardio-facial Syndrome | Genetic/Chromosomal |
| Ventricular Septal Defect (VSD) | Cardiology |
| Very Long Chain Acyl-CoA Dehydrogenase Deficiency (VCLADD) | Metabolic |
| Visceral Hypersensitivity | GI |
| Waardenburg’s Syndrome Type 4 | Genetic/Chromosomal |
| West Syndrome | Neurological |
| Wiedemann-Steiner Syndrome | Genetic/Chromosomal |
| Williams Syndrome | Genetic/Chromosomal |
| Wolf-Hirschhorn Syndrome | Genetic/Chromosomal |
| Worster Drought Syndrome | Genetic/Chromosomal |
| Xq28 Duplication | Genetic/Chromosomal |
| Zellweger Syndrome Spectrum/Peroxisomal Biogenesis Disorders | Genetic/Chromosomal |