Building a Care Team
Caring for a child who is struggling to swallow, eat, and breathe can be confusing and scary. Afterall, these are the basic functions every human needs to survive and thrive.
Whether your child has been formally diagnosed with a laryngeal cleft, or you are still looking for answers, finding medical professionals who can help is key. Oftentimes, assembling a team of various experts will be helpful to guide you through a laryngeal cleft journey.
This team usually includes:
ENT (ear, nose, and throat doctor) or thoracic surgeon
SLP (speech-language pathologist)
Pulmonologist
Gastroenterologist
Others (pediatrician, neurologist, geneticist, etc.)
Family Circumstances
Each child is unique and comes to this journey with a different anatomy, related and unrelated conditions, access to care, genes, environment, etc. These differences mean a provider that works well for one child, may not be the best fit for another.
Similarly, each family brings their own unique circumstances: location, jobs, financial resources, social support, other children/responsibilities, their own medical conditions, etc. Parents and caregivers have many decisions to make regarding the child’s care, and each family will need to assemble a team based on these personal varying factors.
Parents know their child best and are the most important people on the team.
“It’s important to note that there is no right or wrong answer when assembling a medical team. Parents can only seek to do their best when balancing their child’s unique medical needs with their own individual circumstances. ”
Starting out, parents need to decide what parameters will guide their provider search. Based on their unique circumstances, some families may choose to assemble a local team, while others willing to travel may broaden their geographical search. Additionally, some families may have limited choices if their child is in urgent need of medical care.
Important factors to consider include, but are not limited to:
child’s current health status
insurance coverage
geographical location
financial resources
social support
family stability
Searching for a Provider
Common ways to find providers that are a good fit for your family include: researching the provider’s background, asking the provider questions, and seeking feedback from others.
Online Background Information
Most providers offer their background information online, providing useful information that may demonstrate their level of experience with laryngeal clefts. Background information may include:
education, including fellowships
current hospital affiliation
specialized team/center affiliation
published research
presentations
teaching experience
Questions To Ask a Prospective Provider
Since a laryngeal cleft is a rare disorder, many providers have limited or no experience with it. The following questions may help you better understand a provider’s level of laryngeal cleft experience.
These questions are meant to be a starting point and are not all inclusive for every child and family. Additionally, you likely won’t need to ask all of these questions. Focus on asking those that best support your unique circumstances.
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How many laryngeal cleft patients do you diagnose or treat each year?
When do you recommend feeding therapy, and what role does it play in treatment?
How do age, weight, and overall health factor into treatment decisions?
Do you use injections, stitch repairs, or a combination? Why?
How many injections or stitch repairs have you performed on laryngeal cleft patients?
What is your standard recommendation for follow-up swallow studies and thickener weaning after a surgical intervention?
What type of hospitalization/observation is typical after a surgical intervention?
What level of hospital care is available should complications arise after a surgical intervention?
How do you coordinate care with SLPs and other specialists when managing laryngeal cleft?
When do you refer cases to other centers/physicians?
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What is your experience and training in pediatric dysphagia?
How many children with laryngeal cleft have you worked with?
What types of feeding strategies do you use for children with a laryngeal cleft?
When do you recommend thickening, and how do you determine consistency?
How do you determine the frequency and duration of feeding therapy?
How do you decide if tube feeding may be appropriate to recommend?
What is your approach to thickener or tube weaning when clinically appropriate?
If you have limited experience with laryngeal cleft, how would you approach care and collaboration?
How do you coordinate care with ENTs and other members of the care team?
Do you have experience working with children with tracheostomies or complex airway conditions?
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Do you have experience treating severe (types 3 and 4) laryngeal clefts?
How many severe laryngeal cleft repairs have you performed?
How do you decide between endoscopic and open repair?
How do you decide if or when a tracheotomy is needed?
What does the typical surgical recovery period look like?
What are the expected long-term outcomes after surgery?
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Is the provider in-network with your insurance?
If out of network, does the office assist with prior authorizations and insurance submissions?
What is the typical wait time for a new patient appointment?
Does the provider offer in-person or virtual second opinions?
What is the typical timeline for a second opinion?
If care requires travel, does the office assist with logistics or coordination?
What lodging options are available for families traveling for care?
Feedback From Others
At times it may be helpful to hear feedback from other medical professionals or families that have experience with a provider or facility. Some potential sources of feedback include:
Primary care providers should have experience with some local professionals, and possibly regional or national experts as well (if you are open to travel.)
Specialists are often happy to refer you to other providers that they frequently work with. This is a great opportunity to ask the referring specialist questions about the provider they are recommending.
Some professionals will connect you with other families they have worked with in the past, providing an excellent opportunity to learn more about the provider.
“In general, online forum/social media comments often contain misleading, exaggerated, or erroneous information. Do your own research to make an educated decision. ”
Assembling a team of providers to care for your child can feel daunting. However, finding professionals who are a good fit for your family’s unique circumstances can make a meaningful difference along the journey.