The best definition of a child with special needs is a child who, because of his/her unique medical or developmental difficulties, has needs in addition to those of his/her age-matched peers. This description may encompass an umbrella of diagnoses. It may include children who have mild learning disabilities or profound cognitive impairment; medical conditions or syndromes including neurologic impairment, severe allergies, and children with terminal illness; and a spectrum of disorders such as autism, attention deficit hyperactivity disorder (ADHD), and developmental delay (see Box 5.1).

Many of the common ear, nose, and throat (ENT) problems may be more frequent, more persistent, and more challenging in children and adults with special needs. ¹ In this chapter, we discuss head and neck examinations in the clinic environment, common otological conditions, nasal and sinus diseases, throat and airway management, and complications in these children. Children who have special needs may require otolaryngological services beginning in the neonatal period, through their childhood, and lasting well into adult life.

ENT care in children has come a long way in recent years, and these advances have had a particular effect in improving outcomes for children with special needs and their families. Children are now usually seen in dedicated pediatric clinics. Children with developmental delay are now managed in the same caring ethos as typically developing children. Diagnostic techniques have improved; the nasal cavity and the airways can be evaluated with pediatric endoscopes. Digital imaging with high-quality monitors in outpatient clinics allow parents and child to see his/her own conditions, for example, showing a child a screen image of their own eardrum can be of interest to the child as well as help the clinician explain the clinical findings to parents. Management of many conditions has also changed dramatically. Digital and programmable hearing aids, bone-anchored hearing aids (BAHAs), and cochlear implants have significantly improved access to sound for many people with permanent hearing loss, with resultant improvement in their speech and language development (see ▶ 15). This has led to better communication skills and ultimately greater integration into society for a large number of children who in an earlier era might have been marginalized and disadvantaged. ^{2,​ 3} Head and neck malformations and tumors that would have required extensive and mutilating surgery can now often be managed by radiological interventional techniques or by chemotherapy. Advances in surgical techniques allow for safer and more effective resection of large head and neck tumors, and vascular or lymphatic malformations. ^{4,​ 5}

5.2 The Ear, Nose, and Throat Consultation

5.2.1 General Considerations

Examining any child may be challenging but examining a child with developmental or learning difficulties may be even more difficult. The child may be frightened and have a limited ability to communicate or understand. Accompanying parents or carers will have additional concerns specific to the child’s disability. The examination may need to be modified if the child is upset, is using a wheelchair, or is unable to stay still.

To provide the best care and environment for these children and their families, the consultation should be in an adequately staffed pediatric clinic. Pediatric trained nurses and play specialists that are accustomed to dealing with children and have a good knowledge of child development can make the hospital visit less intimidating and will greatly enhance the prospect of a good outcome. Clinic waiting areas need to be conducive to a playful environment for children, with appropriate toys, pictures, and suitable seating and flooring arrangements that are both comfortable and safe (see ▶ Fig. 2.2). Beware of excessively noisy toys that can make a conversation in the nearby consultation room difficult.

Many clinicians set aside a specific clinic for children with special needs. This may not always be compatible with the demands of a busy service, but if these children are seen in a general clinic, some adjustments can greatly improve the experience for the clinician, child, and parent/carer alike. Consider allocating a first or last appointment slot to children with special needs; they may need an extended consultation session and will appreciate a quick passage into the consultation room as soon as possible after arrival. In most jurisdictions, health care providers now have a legal duty to ensure that children must not be discriminated against on the grounds of a medical condition or a disability and must make reasonable adjustments to ensure no such discrimination occurs.

Often families have to deal with multiple medical appointments, frequent crises, uncertainty about the child’s future and prognosis, and constant worry. Clinicians need to acknowledge the parents’ concerns and not appear condescending, rushed, dismissive, or unwilling to listen.

5.2.2 The History

Sometimes the child may be accompanied by carers rather than parents. The parents or carers may be sensitive but are often very knowledgeable about their child’s condition and associated issues. Parents will not expect you to have a detailed and nuanced knowledge of often-rare disorders, which they may know a great deal about, but it can be tiresome to have to repeatedly tell a succession of new doctors about the child’s previous medical history and treatment.

Gather as much information as possible about the child before beginning the consultation. Read the notes carefully before the child comes into the consultation room. Few parents appreciate seeing their doctor shuffling through notes to acquaint himself/herself with basic information during a consultation. As medical records are increasingly digitized and stored electronically, it can be even more difficult to glean important details about a child’s previous history. Both parent and child will greatly appreciate seeing a doctor who knows them and with whom they have built a rapport on successive visits. Important aspects of the history include the social background of the child, for example, the number of siblings, if the child lives with parents or in a residential home, whether he/she goes to a special or a mainstream school, and what support he/she has at home and in school. Enquire on the parent’s membership and knowledge of local parent support groups or national associations. Make open enquiries as to the general health of the child but importantly specifically to elucidate conditions that may be related to the syndrome or underlying condition ( ▶ Table 5.1), for example, thyroid status in Pendred’s syndrome, cardiac status in Down’s syndrome, or kidney function in Alport’s syndrome. The associated conditions may have important implications when considering general anesthesia and perioperative care, such as cardiac status or neck stability in a child with Down’s syndrome or airway access and ongoing oxygen dependency in a child with mucopolysaccharidosis.

The child will usually have a named lead pediatrician, and the otolaryngologist is only one of a number of clinicians looking after him/her. If the child has no lead pediatrician, consider enlisting one so that her overall medical care is under the surveillance of one team as far as possible. Always communicate the results of the consultation with the relevant clinicians, including the community nursing team, particularly if surgery is planned as there may be important considerations regarding perioperative care, for example, prophylactic antibiotics, perioperative steroids, etc.

In increasingly multiethnic societies, appropriate interpreters should be available throughout the entire care pathway so that an adequate history can be obtained, to explain the nature of the examination before it takes place, to explain the findings, and to explain the range of treatment options available. A “hospital passport booklet” ( ▶ Fig. 5.1) as used in the United Kingdom, ⁶ or its equivalent, ensures people with special needs are more involved in their care and that the care is provided in a personalized and dignified manner.

5.2.3 Examination

Note the child’s general development including speech, comprehension, socialization, and motor skills. Much useful information can be gained just by watching the child’s behavior during the consultation, for example, gait abnormalities and difficulties with fine motor skills may suggest spinal cord compression from atlantoaxial subluxation.

When examining, approach the child gently and cautiously, for example, by first using a polished metal spatula below the nostrils to give important information on the patency of the nasal passageway rather than by introducing a speculum (see ▶ Fig. 2.4). Examine the ears with the child in the parent’s lap or in the wheelchair ( ▶ Fig. 5.2). Examining the mouth and oropharynx can often be more rewarding if a small child is placed into the examiner’s lap. This permits a nonconfrontational view of the oropharynx from above rather than a more intimidating frontal examination.

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