From Anxiety to Action:
What to expect when your child has a laryngeal cleft repair or rigid scope procedure.
By Caetyn Groner
MS, CCC-SLP and Type 1 Laryngeal Cleft Mom
Knowing your child will be undergoing a general anesthesia procedure can spark a variety of emotions: hope for answers, fear for the outcome, and worry about the process. I certainly felt many emotions and carried these worries through my children’s experiences. I hope that by learning more details about these procedures, you will feel more comfortable and confident moving through your child’s laryngeal cleft journey.
Common General Anesthesia Procedures
For most mild laryngeal cleft patients, a rigid scope and a stitch or filler repair are the two main general anesthesia procedures that may be needed. (For more severe clefts, some children may need an open cleft repair, which is not covered in this article.)
The Rigid Scope
This is the gold-standard procedure to diagnose a laryngeal cleft. It’s where you will learn more about your child’s airway through one of these types of rigid scopes:
Direct laryngoscopy and bronchoscopy (DLB) to examine the airway.
Microscopic laryngoscopy and bronchoscopy (ML&B) to examine the airway.
Triple scope to examine the airway and upper GI tract.
A rigid scope is conducted in the operating room under general anesthesia and usually takes one to two hours. These scopes are inserted endoscopically through your child’s mouth, so there are no incisions. Depending on the type of scope performed, specialists will examine your child’s anatomy and tissues from different parts of their airway and possibly digestive system (with a triple scope). They will be able to give you immediate answers about your child’s anatomy, but some samples/biopsies will need to be sent to a lab to process.
Depending on your child and if there are any other procedures to be completed while they are under anesthesia (ear tubes, adenoid or tonsil removal, feeding tube placement, etc.), you may be able to go home after they wake up, or you may be admitted to the hospital. (I will cover what to pack for a hospital stay in the next section.)
“If a type 1 laryngeal cleft is found, some providers will recommend a stitch repair, while others will inject temporary filler into the edges of the cleft during the scope procedure. If a type 2 - 4 cleft is found, most ENTs will recommend a stitch repair at a later date.”
Filler is temporary and will eventually dissolve. Some children benefit from the filler, but their dysphagia (swallowing difficulties) returns once it dissolves. Other children don’t respond to the filler and continue to have dysphagia, though they often improve with a stitch repair performed later. A small minority of children seem to gain long-term benefit from the filler and may not need further treatment. Your provider will give you more specific expectations based on your child’s history and swallow study before the scope occurs.
What to Know Before a Rigid Scope
Anesthesia can affect children differently. Make sure to express any concerns to the team before they take your child back for the procedure. There are several different medications to help with falling asleep and waking up.
Bring something to do during the wait for yourself and anyone with you. We like to bring playing cards to distract ourselves.
I have also enjoyed chatting with other parents in the waiting room. Community among medical parents is healing.
Have a hearty meal before you arrive. You may not want to leave the waiting room, even if you are allowed to do so. In general, a DLB and ML&B are quicker than a triple scope and may be completed sooner than expected.
Please honor signs that ban eating in the waiting room. The children waiting cannot eat before their procedure and some may have severe food allergy reactions that are life threatening or could delay their procedure by weeks or months.
You may leave a scope with more questions than answers. If something does not seem right, or if you don’t understand, tell your providers. Some children's hospitals with aerodigestive teams offer a second opinion appointment to review previous results from another facility.
The Stitch Repair
A stitch repair is performed endoscopically through the mouth. Your child’s throat will not be opened from the front. That type of surgery is called an open repair and is usually only needed for severe clefts.
One of our medical team members explained that our child’s airway didn’t fully “zip up,” so the repair zips up the cleft using stitches. It may be one stitch, or it may be more. The surgeon may also perform other procedures if they are needed, such as a supraglottoplasty for laryngomalacia. They will tell you what to expect based on the scope results.
What to Know Before a Stitch Repair
When I asked other parents what they wish they had known going into an endoscopic repair, there were two resounding answers:
Recovery may be longer and more painful than anticipated.
Changes in your child’s swallow may take (much) longer than you anticipated.
Your surgeon will tell you what they expect based on their experience, research, and feedback they have received from families. My child woke up slightly cranky, then settled down and asked to drink his thickened water within two hours of waking. He ate soft food fairly normally once we saw he tolerated clear liquids. (At that time he was partially tube-fed, so normal for him was about 50 percent of other children his age.)
We gave him pain medication for a few days. He coughed a little extra, sounded a bit junky, and had trouble sleeping the first night. He was back to normal by the end of the week. The thickener weaning process took several months, but it went more quickly than I anticipated. It was the easiest recovery of all his procedures!
Other families had nearly the opposite experience with coughing, difficulty managing secretions from inflammation in the airway, pain lasting a few weeks, and a year-plus thickener weaning process. Every child is different.
Communicate with your surgeon about any difficulties encountered during your child’s recovery. Some experiences may be on the spectrum of normal, while others may need extra medical attention. Our motto is, “Plan for the worst. Hope for the best.”
While in the hospital, ask for a consultation with a speech-language pathologist (SLP), and make sure you are set up for feeding therapy before and after the repair with a therapist who is competent in pediatric dysphagia.
There are different types of feeding therapy that address the various causes of feeding difficulties. For example, picky eating due to sensory processing difficulties needs a certain type of feeding therapy, whereas swallowing difficulties due to an anatomical defect require a different type of feeding therapy. Your child may have more than one type of feeding difficulty.
“For the purpose of improving swallowing difficulties due to a laryngeal cleft, it is important to work with an SLP who is educated, experienced, and competent in pediatric dysphagia.
”
Traveling Considerations
Some families need to travel to access a medical team experienced with laryngeal clefts. In that case, it’s important to ask your physician about traveling home after a procedure. They may advise you to stay close for a day after discharge, or they may prefer you don’t fly for a few days after the procedure.
What To Pack For the Hospital
You will likely have at least a one-night hospital stay to observe your child’s airway after surgery. Here are my hospital must-haves:
Feeding
Formula or breast pump. (The hospital likely has your formula, but bring it just in case.)
Preferred thickener.
Supplies you use to thicken liquids such as a whisk, shaker bottle, warmer, etc.
Your child’s cups, bottles, and pacifiers.
Preferred foods and drinks for your child. (These may be necessary for food allergies or simply more enticing than hospital food.)
Feeding tube care items that you prefer such as grip-lok, cinches, tubie pads, tubie tape, etc.
Hearty snacks for you.
Sleeping
White noise machine.
Eye mask for sleeping.
Special blanket or stuffed animal.
Headlamp. (A convenient, hands-free way to help with vitals or feeding tube care in the middle of the night.)
Clothing
Change of clothes for you and your child.
Sleep sack for baby.
Comfy sweater.
Non-slip shoes or slippers for you and your child.
Miscellaneous
Your medications.
Your child’s medications and supplements. (Often hospitals only carry one brand/version of a medication, such as a PPI. If you prefer a certain brand, make sure to bring it with the pharmacy’s label.)
Toiletries for you.
Tablet or laptop. (Don’t forget the charger and to download favorite movies in advance in case the internet is spotty.)
A few favorite small toys.
A few new toys or activities like a coloring book, lego set, small action figure/doll, etc.
Notebook/binder and pen to take notes and save documents, such as photos from the surgery.
Final Thoughts
No matter the age of the child or the severity of their cleft, each child is unique in their surgery and recovery. My two most important pieces of advice as a mom are:
Trust and advocate that you know your child best.
Communicate with your specialty team, hospital providers, nurses, therapists, loved ones, and your child.
While the laryngeal cleft journey can be daunting, always remember you have a community, whether it’s online, local, or both. I wish you well on your child’s journey to thin liquids!
Caetyn serves on LCN's Medical Advisory Board, in addition to being an SLP and mom.