An otolaryngologist (ENT), sleep specialist and/or pulmonologist can assess for obstructive sleep apnea. A child-life specialist can help your child and family become comfortable with a CPAP or BiPap device. Many medical centers have units devoted to assessing sleep disorders.
Obstructive Sleep Apnea
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Children with SNI are at increased risk for obstructive sleep apnea, a condition that decreases airflow into the lungs during sleep. Apnea occurs when there is obstruction of the area from the back of the throat to the upper part of the windpipe. Obstructive sleep apnea causes repetitive breathing stops and starts, and intermittent waking that may result in excessive daytime sleepiness. The two most common treatments for obstructive sleep apnea are removal of tonsils and adenoids, and/or a CPAP or BiPAP medical device that delivers pressurized air through tubing into a mask worn during sleep.
Children with SNI and obstructive sleep apnea may snore, breathe noisily, and/or have episodes when lack of airflow causes gasping or waking. Sometimes sleep apnea is discovered when the child is in the hospital and their oxygen level drops during sleep. Problems in children with SNI that may increase the risk for obstructive apnea include abnormal motor tone and less muscle control of the upper airway, and/or congenital syndromes that alter the craniofacial structure of the upper airway. Certain medications may lead to increased risk for apnea. In addition, your child’s inability to reposition during an obstructive event, or pain that causes their muscles to contract, may worsen obstructive apnea.
If you and the medical team suspect obstructive sleep apnea, your child will be referred to an otolaryngologist (ENT). The specialist will take a history and examine your child for enlarged tonsils or adenoids. An overnight sleep study, called a polysomnogram, might be ordered. During this study the oxygen level and breathing pattern are recorded and later analyzed.
Sometimes removal of the tonsils and adenoids is recommended to improve sleep. Some children are treated with continuous or bilevel positive airway pressure through a small device–CPAP or BiPAP–that sends air at a higher pressure into the back of the throat to keep the airway open. This air flows through a tube and mask that is placed over your child’s nose, or nose and mouth.
Introducing the new device may take time and require experimentation with mask styles. There are several alternative masks and delivery systems that can be considered if the first version is not well tolerated. A child-life specialist will have tools to help your child adapt to the mask and will support you if you are having difficulty adjusting to this new reality. They can also talk with your other children about the new equipment.
For some children the discomfort caused by the CPAP or BiPAP may outweigh the benefits. Also consider that ongoing use of the mask may alter your child’s facial structure. You will be the best judge of whether a device is helping.
The addition of a new piece of medical equipment can be an emotional hurdle. Initially, you may find it difficult to think of your child wearing a mask at night. Your medical team can help you understand that when a CPAP or BiPap is used to treat obstructive sleep apnea, it is supporting the anatomy of the respiratory system, not providing lung or breathing support. If you have been concerned about your child’s breathing at night, the addition of a CPAP or BiPAP may reassure you that your child’s oxygen needs are being met, and that they will sleep better as a result.
