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Pediatric Otolaryngology

A Team Approach: Specialists and Related Conditions

At a Glance

Because laryngeal clefts are rare and complex, they require a multidisciplinary aerodigestive care team including pediatric ENTs, pulmonologists, and feeding specialists. Children are also routinely screened for commonly associated conditions like esophageal atresia and VACTERL association.

Because laryngeal clefts are rare and impact both breathing and eating, they cannot be managed by a single doctor. Success requires a multidisciplinary care team—a group of specialists from different fields who work together to coordinate your child’s treatment [1][2].

Your Care Team

In many specialized hospitals, these experts work within an Aerodigestive Program, a clinic designed specifically for children with complex airway and swallowing issues [2][3].

  • Pediatric Otolaryngologist (ENT): This is usually the lead specialist who diagnoses the cleft and performs the surgical repair [4][5].
  • Speech-Language Pathologist (SLP) / Feeding Specialist: They perform the swallow studies (MBS/VFSS) and help you manage thickened feeds or therapy to keep your child’s lungs safe [6][7].
  • Pediatric Pulmonologist: They monitor your child’s lung health and treat any inflammation or infections caused by chronic aspiration [8][9].
  • Pediatric Gastroenterologist (GI): They manage reflux (GERD) and ensure your child is getting enough nutrition to grow and heal [10][3].
  • Geneticist: Because a cleft can be part of a larger syndrome, a geneticist helps identify any underlying genetic causes [11][12].

Associated Conditions and Syndromes

A laryngeal cleft is often not an isolated issue. It is frequently associated with other congenital (present at birth) anomalies [13][14].

Related Structural Issues

The most common association is with Esophageal Atresia (EA) or Tracheoesophageal Fistula (TEF)—conditions where the esophagus and windpipe do not form correctly. Children with EA/TEF have a significantly higher chance of also having a laryngeal cleft [15][14].

Genetic Syndromes

Doctors may look for specific clusters of symptoms that suggest a syndrome:

  • VACTERL Association: A group of birth defects that often occur together (Vertebral, Anal, Cardiac, Tracheal, Esophageal, Renal, and Limb) [15].
  • Opitz G/BBB Syndrome: A condition that can cause midline defects, including laryngeal clefts and heart issues [11].
  • Pallister-Hall Syndrome: A rare disorder that can impact the airway, limbs, and hormone-producing glands [11].
  • Neuromuscular Dysfunction: Many children with a cleft also have issues with how the muscles in their throat work, which can make swallowing difficult even after the cleft is repaired [16][14].

While this list sounds intimidating, it is important to know that many laryngeal clefts are isolated anomalies [13]. Doctors screen for these associated conditions out of an abundance of caution to ensure your child receives complete care, not because they are guaranteed to have them [11].

Evaluating Your Team

Because this condition is rare, you have the right to ensure your medical team has the necessary expertise. Consider asking:

  1. Experience: “How many laryngeal cleft repairs does this specific surgeon perform annually?” [17]
  2. Coordination: “Do these specialists meet regularly to discuss my child’s case, or will I be responsible for sharing information between them?” [1][2]
  3. Support: “Does the hospital have a dedicated Neonatal or Pediatric ICU with staff who are specifically trained in managing complex pediatric airways?” [17]
  4. Follow-up: “What is the long-term plan for monitoring my child’s swallowing and lung health as they grow?” [2]

Common questions in this guide

What doctors treat a laryngeal cleft?
A laryngeal cleft requires a multidisciplinary care team, often organized within an Aerodigestive Program. Your child's team will typically include a pediatric otolaryngologist (ENT), speech-language pathologist, pulmonologist, gastroenterologist, and geneticist.
Are laryngeal clefts associated with other birth defects?
Yes, laryngeal clefts frequently occur alongside other congenital anomalies. The most common associated structural issues are esophageal atresia (EA) and tracheoesophageal fistula (TEF), where the esophagus and windpipe do not form correctly.
What genetic syndromes are linked to laryngeal clefts?
Laryngeal clefts can be part of broader genetic conditions like VACTERL association, Opitz G/BBB Syndrome, and Pallister-Hall Syndrome. A geneticist is often included in the care team to screen for these conditions and provide a complete picture of your child's health.
What should I ask my care team before a laryngeal cleft repair?
Because this condition is rare, ask your surgeon how many laryngeal cleft repairs they perform annually. It is also critical to ask if the hospital has a dedicated pediatric ICU trained in complex airways and how the specialists will communicate about your child's ongoing care.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Does our hospital have a dedicated Aerodigestive Clinic where our specialists can meet together to discuss my child's care?
  2. 2.How many complex laryngeal cleft repairs (specifically Types II-IV) does this surgical team perform each year?
  3. 3.Which genetic syndromes are you screening for, and will a geneticist be part of our initial evaluation?
  4. 4.Can we meet with the specific feeding specialist (SLP) who will be managing my child's transition to oral feeds after surgery?
  5. 5.What is the protocol for communication between the ENT and the GI specialist regarding my child's reflux management?

Questions For You

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References

References (17)
  1. 1

    Congenital laryngo-tracheo-esophageal clefts: updates from a quaternary care pediatric airway unit.

    Ishii A, Christophel E, Chollet M, Sandu K

    European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery 2024; (281(1)):283-294 doi:10.1007/s00405-023-08263-8.

    PMID: 37816841
  2. 2

    [Clinical diagnosis and treatments of type Ⅱ-Ⅳ congenital laryngotracheoesophageal cleft in 8 children].

    Zhao J, Wang GX, Wang H, et al.

    Zhonghua er bi yan hou tou jing wai ke za zhi = Chinese journal of otorhinolaryngology head and neck surgery 2021; (56(9)):972-976 doi:10.3760/cma.j.cn115330-20201029-00839.

    PMID: 34666447
  3. 3

    Sequencing of the Lumbricus terrestris genome reveals degeneracy in its erythrocruorin genes.

    Dowd S, Lagalante L, Rahlfs J, et al.

    Biochimie 2024; (219()):130-141 doi:10.1016/j.biochi.2023.11.007.

    PMID: 37981225
  4. 4

    Outcomes of surgical repair of Type III and IV laryngotracheoesophageal clefts with posterior cartilage grafting.

    Tan L, Li Q, Chen C

    European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery 2024; (281(9)):4881-4887 doi:10.1007/s00405-024-08701-1.

    PMID: 38761217
  5. 5

    Inter-rater reliability in diagnosis and treatment of type one laryngeal cleft: A blinded observational study.

    Newberry CI, Carpenter P, McCrary H, et al.

    International journal of pediatric otorhinolaryngology 2020; (139()):110475 doi:10.1016/j.ijporl.2020.110475.

    PMID: 33130466
  6. 6

    Swallowing dysfunction among patients with laryngeal cleft: More than just aspiration?

    Strychowsky JE, Dodrill P, Moritz E, et al.

    International journal of pediatric otorhinolaryngology 2016; (82()):38-42.

    PMID: 26857313
  7. 7

    Management of laryngeal cleft in mechanically ventilated children with severe comorbidities.

    Ueha R, Goto T, Kaneoka A, et al.

    Auris, nasus, larynx 2018; (45(5)):1121-1126 doi:10.1016/j.anl.2018.03.010.

    PMID: 29673563
  8. 8

    Clinical predictors of laryngotracheoesophageal clefts and tracheoesophageal fistulae in children with dysphagia.

    Mattos C, Phinizy P, Duffy KL, et al.

    Pediatric pulmonology 2021; (56(12)):3792-3795 doi:10.1002/ppul.25628.

    PMID: 34387933
  9. 9

    Pulmonary and Radiographic Findings in Pediatric Type 1 Laryngeal Cleft.

    Francisco S, Muise E, D'Anna R, et al.

    The Laryngoscope 2025; (135(9)):3404-3411 doi:10.1002/lary.32194.

    PMID: 40227884
  10. 10

    Type 3 Laryngeal Clefts Presenting with Upper Airway Obstruction without Aspiration.

    Weitzman RE, Shah HP, Modi VK, Maurrasse SE

    The Laryngoscope 2024; (134(2)):977-980 doi:10.1002/lary.30849.

    PMID: 37436152
  11. 11

    Familial and genetic factors in laryngeal cleft: Have we learned anything?

    Dombrowski ND, Li Y, Zhao CX, et al.

    International journal of pediatric otorhinolaryngology 2020; (138()):110283 doi:10.1016/j.ijporl.2020.110283.

    PMID: 32771712
  12. 12

    Familial Laryngeal Cleft: Pediatric Detection Leads to Adult Diagnosis and Intervention.

    Turbeville HR, Morrison RJ, Green GE

    The Annals of otology, rhinology, and laryngology 2025; (134(12)):945-947 doi:10.1177/00034894251356731.

    PMID: 40629707
  13. 13

    [Pediatric laryngeal clefts: an experience in the diagnosis and management of 13 cases].

    Wu ZB, Li L, Pan HG, et al.

    Zhonghua er bi yan hou tou jing wai ke za zhi = Chinese journal of otorhinolaryngology head and neck surgery 2017; (52(9)):681-685 doi:10.3760/cma.j.issn.1673-0860.2017.09.009.

    PMID: 28910893
  14. 14

    Spectrum of swallowing abnormalities in children with Type I laryngeal cleft.

    Liao K, Ulualp SO

    International journal of pediatric otorhinolaryngology 2022; (163()):111380 doi:10.1016/j.ijporl.2022.111380.

    PMID: 36379096
  15. 15

    Prevalence of Laryngeal Cleft in Pediatric Patients With Esophageal Atresia.

    Londahl M, Irace AL, Kawai K, et al.

    JAMA otolaryngology-- head & neck surgery 2018; (144(2)):164-168 doi:10.1001/jamaoto.2017.2682.

    PMID: 29270628
  16. 16

    Neurologic Evaluation in Children With Laryngeal Cleft.

    Walker RD, Irace AL, Kenna MA, et al.

    JAMA otolaryngology-- head & neck surgery 2017; (143(7)):651-655 doi:10.1001/jamaoto.2016.4735.

    PMID: 28384788
  17. 17

    Implementing a Pediatric Perioperative Surgical Home Integrated Care Coordination Pathway for Laryngeal Cleft Repair.

    Leahy I, Johnson C, Staffa SJ, et al.

    Anesthesia and analgesia 2019; (129(4)):1053-1060 doi:10.1213/ANE.0000000000003821.

    PMID: 30300182

This page is for informational purposes only and does not replace professional medical advice. Always consult your child's aerodigestive or pediatric care team for personalized guidance regarding laryngeal cleft management.

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