By Caetyn Groner

MS, CCC-SLP and Type 1 Laryngeal Cleft Mom

Despite being a medical provider myself and knowing the intricate details of feeding and swallowing, I am always nervous before appointments and procedures for my child. It’s stressful traveling and getting out of our daily routine. I need to remember all my questions and updates. I need to answer the specialists’ questions accurately, and I want to ensure our plan going forward is best for my child. Meanwhile, my child is wiggling all around the clinic room! 

In our rare disease journey, I have learned that being prepared and organized is incredibly helpful to not only the specialists from whom we seek help, but also myself and my child. I hope the following tips are useful to other parents who are preparing for initial specialist appointments and/or a swallow study. 

The Swallow Study 

A modified barium swallow study (MBSS), also called a videofluoroscopic swallowing study, is a video X-ray procedure that may show if aspiration is occurring when your child is swallowing liquids and/or solid foods. This procedure takes place in the radiology department of a hospital. You will stay with your child for the entire procedure.

The swallow study will likely start with a chest X-ray. Your child will either stand or lay down, depending on their age and physical abilities. All adults will wear a protective lead apron, much like you wear during dental X-rays. A radiologist will determine the imaging details (timing, location, etc.) and an SLP will guide the drinking, eating, and various modifications during the procedure. Both providers will be watching your child and a screen showing the images in real time. 

Barium is a naturally-occurring, whitish metallic compound that shows up black on X-rays. During the study, flavored barium will be mixed with various consistencies of liquids and spread on solid food. We called it “picture frosting” when my son had a swallow study. It’s rather messy! 

Depending on your comfort level and your provider’s preferences, you may be able to feed your child during the procedure. You will leave the appointment with answers about the safety of your child’s swallowing and corresponding dietary recommendations.

Here are a few tips that I found helpful for my children’s swallow studies: 

• If your child is hesitant, fearful, or has a history of medical trauma, contact the child life department at the facility when the MBSS is scheduled. This allows time to implement any strategies they recommend. It also gives them time to potentially be present and help with the procedure. If the facility does not have child life, reach out to the SLP who will perform the MBSS. They will also have ideas on how to make it a smooth experience.

• Child life or the SLP may have pictures of the room or equipment. This can be helpful to familiarize older toddlers or young children with the space and equipment beforehand.

• Bring preferred cups, straws, or bottles. Bring it all! It’s better to have too many options than to not have a vessel that may be helpful as the swallow study progresses.

• Bring a few of your child’s favorite toys. If the toy is wipeable or washable, even better. My child’s Iron Man figure got quite a few “tastes” of barium! 

• Explain the procedure to your child using words they can understand. Some children do well with a play-by-play description. Others may respond better to fewer words and simple affirmations. 

• If thickener is recommended, make sure you fully understand how to thicken every liquid your child may drink before leaving. Make sure you leave knowing how to obtain thickener and that you have enough samples to last until the shipment arrives.

• Ask questions!

• Get the contact information for the specific SLP who completed the procedure, not just the speech department, in case you have questions that arise later.

• Write down the results and recommendations so you can share them with your physicians and feeding therapist, if you already have one. The radiologist’s report is different from the SLP’s full report. The SLP’s full report takes time to write, so it may not be complete before your next appointment with your ENT or feeding therapist.

The Initial Appointment (ENT or Aerodigestive Team) 

Rarely do our children display the textbook symptoms of a type 1 laryngeal cleft. Often there are other factors that make the diagnosis or potential diagnosis a little fuzzy. My child also has GERD, traditional food allergies, and an atypical presentation of a rare GI food allergy. Symptoms were very difficult to assign to his various issues. Plus, a lot of weird things can be totally normal for babies! 

In light of our experiences, here are a few tips to use when meeting with a specialist or aerodigestive team for the first time:

• Prepare a folder or binder with your child’s medical history. Yes, you will likely provide this information during intake paperwork. However, the physicians will ask for your child’s history during the appointment and having this information literally at your fingertips is helpful to you and your provider.

Consider including:

• Results from imaging, labs, or procedures already completed, especially if done at another facility

• Recommendations and the names of previously-seen providers including pediatricians, other specialists, lactation consultants, SLPs, PTs, OTs, early intervention, functional medicine providers, chiropractors, dietitians, etc.

• Current diet and/or feeding schedule

• Current medications and/or supplements

• Previous medications and/or supplements with dates used and outcomes (did it help?)

• List of all illnesses

• List of ER visits or hospitalizations 

• Vaccinations 

• Sign up for electronic medical records (MyChart, My Health Record, etc.) to access notes and results and directly message your providers.

• Ask how to best reach providers with any questions or updates after your appointment. Some prefer messaging through their patient portal, while others prefer phone calls. 

• Ask how to contact your provider for emergencies. 

• Create an emergency action plan for any scary symptoms your child exhibits.

• If you do not live close to a children’s hospital, create a plan for emergencies and troubleshoot where to go under specific circumstances.

Having a plan going into appointments, and preparing both myself and my child for what procedures will take place, has led to calmer, more positive experiences for us. It allows me the space and time to communicate openly and effectively with the specialists that can so greatly impact the life of my child. I hope these tips lead to a better overall experience for you as well.

Caetyn serves on LCN's Medical Advisory Board, in addition to being an SLP and mom.