How Is COVID-19 Affecting Kids Who Are Medically Complex?

facemask on groundUPDATED 6/12/2020

It’s the big question on everyone’s mind: if my child who is medically fragile or complex gets COVID-19 or Coronavirus, how will he or she be affected? The simple answer is we don’t know yet. However, part of the reason we don’t know is a positive one: there simply haven’t been very many cases in kids in general.

COVID-19 in Kids in General

Numerous studies have indicated that COVID-19 is less common and usually less severe in children. A large study of 2143 children in China revealed that:

  1. More than 90% of patients were asymptomatic or had mild or moderate disease. Mild disease was the equivalent of a cold, while moderate disease included lung changes like simple pneumonia or lung lesions.
  2. Less than 6% developed severe or critical disease.
  3. Children under age one were much more likely to have critical disease or severe disease, and children under five make up more of the severe and critical cases.

In the United States, the most recent CDC data show that the cumulative hospitalization rate for children with COVID-19 is 4.9 children per 100,000 for children 4 and under, and 2.4 children per 100,000 for children 5-18 as of 6/5/2020. Children continue to make up only a small portion of cases. According to CDC reports, as of June 10, 2020, there have been 21 deaths in children 14 and younger, as well as 116 deaths in teens and young adults ages 15-24.

A study from Jama Pediatrics looked at cases in 46 pediatric ICUs in the US and Canada during a three-week period in March and early April. 48 children were admitted to 14 pediatric ICUs during this period and 18 (38%) were intubated and needed to use a ventilator. 11 patients (23%) had multisystem organ failure. At the end of the study, 2 children died (including one who had sepsis prior to contracting COVID-19) and 15 remained hospitalized. While these 48 children were severely affected, it is important to note that the overall low number of children with severe or critical disease continues to suggest that most children fare well with COVID-19.

For the period up to April 2, 2020 data analysis available from the CDC showed 2572 confirmed cases of COVID-19 in children. Of 745 cases that listed hospitalization status, 147 were hospitalized, and 15 required ICU care. A large percentage of hospitalizations were for children under the age of one year.

In the US, there have also been a few hundred reported cases of Pediatric Multi-System Inflammatory Syndrome, a Kawasaki-like inflammatory condition that may be related to COVID-19. Typically appearing a few weeks after initial symptoms, children experience prolonged fever, gastrointestinal symptoms, difficulty breathing, lethargy, red eyes, and unusual red rashes. The condition remains rare, and while most children were successfully treated, several deaths have occurred. More information about this condition can be found in this study from the UK as well as this one of children in NY.

It is important to recognize that children in most studies and CDC data were included because they either had symptoms and presented for medical care or they had other reasons for being tested, such as known exposures. It is likely that other children also had asymptomatic or mild cases but did not require care. Thus, the percentage of asymptomatic and mildly affected children is likely even higher than that cited in studies and CDC data.

COVID-19 in Children with Medical Complexity

We have very limited evidence of how COVID-19 is presenting in children who are medically fragile or complex thus far. Because families of children who are medically fragile are so experienced at isolating and sheltering-in-place, most children in this population have not yet been exposed to COVID-19.

The Jama Pediatrics article on 48 children admitted to ICUs in North America indicates that 40 of the 48 children (83%) had one or more underlying conditions. Unfortunately, the most common underlying condition was medical complexity, defined as children routinely needing medical technology such as a feeding tube or tracheostomy, due to developmental disability or genetic conditions. Obesity was also a contributing factor for many older children. In addition to respiratory complications in most children, the study also found exacerbations of underlying conditions, such as increased seizure activity, diabetic ketoacidosis, or sickle-cell crisis.

Recent data available from the CDC describe a group of 345 children whose cases included information on underlying conditions. 80 of the 345 children had an underlying condition. 40 had chronic lung disease (including asthma), 25 had cardiovascular disease, and 10 were immune compromised. CDC mortality data, which are primarily focused on adult diseases, demonstrate that children and young adults with COVID-19 who died were more likely to also have obesity, diabetes, cancer, and cardiac conditions.

A series of articles and studies have recently evaluated a substantially higher risk for death in those with intellectual disabilities of all ages. This group includes a wide range of children and adults such as those with cerebral palsy and Down syndrome, who often are also medically fragile. One study in the Disability and Health Journal specifically broke down the risk by age, with those children who had intellectual disabilities having a 1.6% case fatality rate compared to a 0.1% risk for those without intellectual disabilities. Risks increased for adults and elderly individuals with intellectual disabilities. A preprint article also demonstrated higher hospitalizations for adults with Down syndrome in New York.

As mild and moderate cases look much like typical colds in children, it is likely that many children will respond to COVID-19 infection in the same way they do to a typical cold. Children who are medically fragile and get very sick with colds will likely follow the same pattern if they become sick with COVID-19.

There is a larger body of evidence in the adult population demonstrating that adults with underlying conditions are more likely to get severe infections, especially those with blood disorders (such as cancer), chronic kidney disease, compromised immune system, endocrine disorders (such as diabetes), metabolic disorders, heart disease, lung disease, and neurological conditions. Pregnant women are also at higher risk. Adults who are medically complex, as well as caregivers who have underlying conditions, are at much greater risk of severe or critical disease.

Recommendations for Children with Medical Complexity

The Royal College of Paediatrics and Child Health has issued guidance on which children need special precautions on and ongoing basis. The children at greatest risk include those with immunodeficiency, immune suppression, children with conditions that make coughing difficult or impossible, and children requiring ventilation or oxygen. Specific recommendations for those with other conditions are also listed.

The following additional recommendations are suggested for children who are medically complex:

  1. Socially isolate all children who are medically complex and practice careful hygiene and cleaning. Especially avoid contact with other viral pathogens, such as flu or RSV, as co-infection tends to worsen disease.
  2. Take your child’s temperature twice a day to monitor for fever.
  3. Maximize your child’s respiratory health and respiratory hygiene.
  4. Do not go to the Emergency Department unless it is an actual emergency.
  5. Children under age one should be particularly monitored, as they are more likely to get severe disease.
  6. Caregivers may be more likely to get sicker than children, so prepare for caregiver sickness or hospitalization.

As we receive more information, we will continue to update this article.

Author: Susan Agrawal • Date: 3/20/2020, Updated 3/30/2020, 4/14/2020, 5/13/2020, 6/12/2020.
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