Insights From an Emergency Department Physician: Having a Plan is Key
Plan Where to Go and What Information to Bring Before Emergency Care Is Needed
By Brian Willenbring, MD
cousin to a child with a laryngeal cleft
The breadth of emergency medicine is infinite, and I guarantee a lot of community emergency medicine physicians have never taken care of – or are even aware of – laryngeal clefts. It is common with rare disorders that the parents may actually know more about the condition than the community emergency medicine physician.
Frequently, parents are flabbergasted that we don't fully understand their child's rare disorder. Nothing will gloss my eyes over more at 3 am than being handed a giant binder with someone's entire history in it and the patient or family responding to my questions with "it’s in the binder." On average, emergency medicine physicians are likely spending at most 5-10 minutes in total reviewing a chart and conducting the history and physical exam on initial arrival unless the patient is critically ill.
Recalling an exhaustive medical history is difficult in stressful situations, yet your child needs you to be their voice. A simple “quick hits” health history summary can be game changing and super helpful because it communicates important information quickly and efficiently to the medical provider.
Health History Summary
This one- or two-page summary typically includes:
medical problems/diagnoses
surgeries
relevant sizes of trach, feeding tube, etc.
medication list (include dates of any recent changes to doses or new medications)
allergies
child’s specialist team and contact information
A subsequent one-page Wikipedia-esque summary of the child's disorder, with any relevant anatomy diagrams, would be helpful for laryngeal cleft patients. I always quickly peruse the nursing home patient's paperwork packet when conducting initial history. It would be extremely helpful if parents handed the initial physician the two or three pages discussed above. This would not be as necessary for simple, unrelated visits such as a laceration. However, having a quick summary on hand would be beneficial for any emergency department visit.
A good way to introduce this health history summary would be, "Our child has a type X laryngeal cleft. It is a rare disorder and sometimes physicians are not fully aware of this birth defect. Here are two pages with our child's relevant medical history and a brief summary of the disorder."
I would be delighted to receive this health history packet. This would be far easier than trying to ascertain relevant information from the electronic medical records (EMR) of another hospital system. Some medical systems allow Care Everywhere access on the EMR, but it is spotty and not always easy to quickly discern a child’s list of medical issues and medications.
Having contact information for the child’s specialist team at their children's hospital is super helpful, especially if it is a personal number or back door clinic number. It can be challenging to hear back from consultants at outside hospitals – especially during off hours/weekends/holidays – if our only point of contact is a page through that hospital's patient placement coordinator.
If the child has any specialty medical equipment (tracheostomy, feeding tube, etc.), please bring extras with you to the ED. A lot of community hospital EDs do not stock pediatric-sized tracheostomy or feeding tubes. We frequently have to temporarily replace feeding tubes with a similar-sized Foley catheter to prevent the tract from closing until the patient can get evaluated at a pediatric center for replacement.
Where to Go for Emergency Care
Emergency department visits are an unavoidable reality for many children born with a laryngeal cleft. With the help of your child’s primary medical team, plan in advance where you will take your child for emergency care, depending on the situation.
Typically, the scenarios are:
Critical care - call 911
Care related to the child’s complex medical condition
Care NOT related to the child’s complex medical condition
“I would strongly recommend if at all possible that families transport their child to their primary children’s hospital (within reasonable distance) if they are the least bit concerned/suspicious that their child’s current issues may be related to their underlying complex medical issues and they do not appear critically ill.
”
There are several reasons for considering driving (within reason) to the primary children’s hospital:
Transfer Difficulties
The primary reason is that in the post-covid world/medical boarding, I frequently still have difficulty transferring patients to children’s hospitals due to boarding and capacity issues. If the family presents to their primary children's hospital, they still may have to board in that ED, but they will be seen by their specialist teams.
I may call from a community hospital to initiate a transfer to the family’s preferred hospital, and sometimes the answer is "no," and there is nothing I can do on my end as a community hospital emergency medicine physician to override a rejected transfer. Usually, this ends up with the patient going to a different children's hospital or boarding in our ED longer to reattempt transfer hours later.
Long Wait Times
While a community hospital ED may be closer, chances are the patient will sit in triage or in a room for a while to be seen by a provider, unless they are critically ill. Frequently, this wait time will be longer than the commute to the local children's hospital. For example, only waiting 1-2 hours to be seen is a good night these days, and 4-6 hours is unfortunately the new normal. Thus, the extra 20-30 minute drive to their primary children's hospital is not as arduous when taken in context.
Slow Transport
If they present to a community hospital ED and require admission at a children's hospital, there can also be a significant delay in EMS transport as they are also critically understaffed in recent years. This can further delay transfer by 4-6 hours at times.
For simple things such as lacerations, foreign body removals, and ear aches that are clearly not related to the child’s complex medical issues, a community hospital ED would be appropriate.
Regardless of the type of emergency, if the family lives far away from their preferred children's hospital, then the closest hospital would be the most appropriate.
Prepare in Advance
Your child needs you to be their advocate in emergency situations. Before an emergency happens, plan where you will go and create a health history summary. Instead of struggling to recall details, you can quickly hand over this important document with confidence, knowing you have provided the information needed to help your child receive appropriate emergency medical care.