Medical Team
How To Assemble a Team of Experts
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.)
Your Family’s Circumstances
Each Journey Is Unique
It’s important to realize that 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.
“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. ”
In the end, parents know their child best and are the most important people on the team.
Starting out, parents need to decide what parameters will guide their provider search. 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
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.
Common ways to find providers that are a good fit for your family include:
Researching the provider’s background.
Asking the provider questions.
Seeking feedback from others.
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 this hidden birth defect. 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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What is your experience with type [X] laryngeal clefts?
How many type [X] laryngeal cleft cases have you treated?
Do you have access to the equipment/hospital necessary to visualize, palpate, diagnose, and treat a laryngeal cleft safely and effectively according to the gold standard recommendations?*
Do you use injections, stitch repairs, or a combination? Why?
How many injections or stitch repairs have you performed on laryngeal cleft patients?
What type of hospitalization/observation is typical after a surgical intervention?
What level of hospital care is available if my child has complications after a surgical intervention?
What type of follow up do you typically recommend after surgical intervention?
What is your standard for follow-up swallow studies and thickener weaning after repair?
When do you recommend feeding therapy?
Does my child’s age or weight matter when considering surgical interventions?
Do you have experience treating laryngeal cleft patients that also have my child’s related conditions (reflux, reactive airway disease, food allergies, EOE, FPIES, malacia, neurological conditions, developmental delays, other midline defects, genetic syndrome, etc.)
When do you refer cases to other centers/physicians?
How do you stay up-to-date on best practices for laryngeal cleft?
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What is your experience with pediatric dysphagia and how did you gain this experience?
How many laryngeal cleft patients have you treated?
If you have not treated a child with a laryngeal cleft before, how will you find support to effectively and safely treat my child?
What types of interventions/treatments do you typically recommend for laryngeal cleft patients?
How do you determine the length of feeding therapy for laryngeal cleft patients?
When do you recommend thickener and how do you determine the amount?
How do you decide when to recommend tube feeding?
What is your experience with thickener weaning or tube weaning?
How do you collaborate with other care providers to ensure my child's safety?
Do you have experience working with children with a tracheostomy?
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Do you have experience with severe (types 3 and 4) laryngeal clefts?
If so, how many severe laryngeal cleft surgeries have you performed?
How do you decide between using an endoscopic or open repair?
How long does the surgery typically take?
What does the typical recovery period look like?
How do you decide if/when the patient needs a tracheotomy?
What might life look like for my child after surgery, both short-term and long-term?
Would it be possible to connect with families who have previously undergone surgery with you?
How much experience does your affiliated hospital’s PICU have with caring for severe laryngeal cleft and tracheostomy patients?
How does your hospital support complex care needs?
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Do you work as part of a multidisciplinary team or aerodigestive center?
If not, how do you collaborate with other specialists and team members?
What other specialists do you usually involve?
How do you involve families in decision-making?
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Is the professional an in-network provider with your child's insurance?
If the provider is out of network, does their office help with prior authorizations and insurance submissions?
If the provider is located out of state, does their office help with logistics and travel?
If traveling, what are the options for patient/family housing?
Does the provider offer in-person or online second opinions?
If so, how long does it take to get a second opinion?
How long does it take to get a new patient appointment?
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:
Providers
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.
Families
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.
LCN’s Provider Directory offers a space for laryngeal cleft parents to share the providers that have helped them. Please know it’s important to do your own research to determine if a provider meets your needs – the directory is simply a starting point.
“In general, online forum/social media comments often contain misleading, exaggerated, or blatantly erroneous information. Do your own research to make an educated decision. ”
Know You Are Supported
Assembling a team of providers to care for your child can feel daunting. However, finding professionals who are a good fit for your child’s medical needs and your family’s unique circumstances can make a meaningful difference along the journey.
LCN was created by parents who have walked this path and understand the challenges families face. Our volunteer team has developed the following resources to offer support, connection, and hope: