Our younger son had his first supraglottoplasty and epiglottopexy at the age of 3. He had a second surgery at the age of 5½.
What Is a Supraglottoplasty?
A supraglottoplasty is a surgical procedure to remove the extra, floppy tissue that surrounds the voice box in children who have laryngomalacia. This tissue often blocks the airway when the child inhales, creating a squeaky sound known as stridor.
There are several types of laryngomalacia. Each type of laryngomalacia has a different area of floppy tissue. The four main types are:
- Type 1: Mucosal tissue flops over the arytenoid cartilages.
- Type 2: Shortened aryepiglottic folds.
- Type 3: Collapse of the epiglottis over the vocal cords.
- Type 4: A combination of the above types.
This surgery is sometimes coupled with a procedure called an epiglottopexy, in which the epiglottis is tacked to the base of the tongue. Children with laryngomalacia often have a long epiglottis that curls up on itself. The epiglottis (which normally protects the airway when food is swallowed) may also flop over and obstruct the airway.
When Is Surgery Performed?
In the vast majority of cases, surgery is not required for laryngomalacia. Most children will have "noisy breathing" but will grow well and maintain their oxygen saturation levels. Some children will have frequent oxygen desaturations, growth failure, or severe sleep apnea that requires surgical intervention.
In severe laryngomalacia, the child's ability to develop and grow is in immediate jeopardy, and surgery is performed to allow the child to grow and maintain appropriate oxygenation.
Indications for surgery include:
- Failure to thrive
- Low oxygen saturation levels when awake
- Obstructive sleep apnea
Some children cannot eat well due to constant oxygen desaturations when attempting to drink from a bottle, and this causes failure to thrive. Others have severe gastroesophageal reflux disease (GERD), which also causes feeding difficulties. The GERD may be silent, so the child does not necessarily vomit or have obvious symptoms of reflux—GERD often worsens laryngomalacia symptoms by inflaming the floppy tissue around the vocal cords.
GERD and Laryngomalacia
Likewise, laryngomalacia can worsen the GERD symptoms, as the child creates a "vacuum" effect when trying to breathe against the obstruction in the airway. This creates a negative pressure in the esophagus, which can draw up stomach contents into the esophagus. GERD and laryngomalacia often coexist. Relieving the airway obstruction may help the child to thrive, though the reflux will often persist after the laryngomalacia has been improved via surgery.
Some infants and children have an obstruction severe enough to cause significant oxygen desaturations, even when awake. These children have daytime apneas and may turn blue. If the child has significant oxygen desaturations, surgery may be indicated.
Sleep apnea is another reason for surgery: when children sleep, their airway relaxes. For many children with laryngomalacia, this causes complete obstruction of the airway. The child must wake up to take another breath.
Untreated sleep apnea causes developmental and physical growth problems. If severe enough, the child may develop heart problems, high blood pressure, and high carbon dioxide levels that cause problems with the autonomic breathing process (the body actually relies on carbon dioxide levels to "know" when to take a breath - high CO2 levels interfere with this process).
How Is the Surgery Performed?
There are two primary methods ENT surgeons use to resect the redundant tissue: some surgeons use "cold steel" (microscissors), and others use a CO2 laser. The child is asleep for the entire procedure. The excess tissue is removed, and, if necessary, the epiglottis is tacked to the base of the tongue to prevent it from flopping over the child's vocal cords.
Most children are able to breathe room air following the procedure. Typically, the child will be monitored overnight in the hospital to ensure there is no airway swelling.
In some cases, the child will be intubated and kept on a ventilator for a period of time following surgery. If this occurs, the child will be placed in a pediatric intensive care unit (PICU). Once the breathing tube has been removed, the child will be monitored for at least 24 hours to ensure there are no breathing problems following the surgery.
Recovery From a Supraglottoplasty
Pain from the surgery typically lasts for about one week, though the recovery may be longer for children who also had their lingual tonsils shaved. Pain medication is often prescribed by the surgeon and should be used as instructed.
Steroids and antibiotics are also prescribed for most supraglottoplasties. The steroids prevent the airway from swelling, and the antibiotics prevent infection.
Children who were not previously on a proton pump inhibitor (PPI) for acid reflux may be placed on this medication for the duration of the recovery period. If acidic reflux from the stomach irritates the surgical area, the tissues may become floppy again and render the surgery ineffective.
Some coughing and spluttering may be observed when the child drinks thin liquids. If necessary, a thickener may be used (under the direction of the supervising physician). Many children with laryngomalacia have problems with aspiration or choking prior to the procedure, and may continue to have problems after this procedure. If aspiration or choking are observed, they should be reported immediately so appropriate medical intervention (via thickeners or feeding therapy) may be initiated.
Our Personal Experiences with Supraglottoplasties
Our family has two children with severe laryngomalacia and obstructive sleep apnea. Our younger son had his first supraglottoplasty and epiglottopexy at the age of three years.
The First Surgery
His first supraglottoplasty was uncomplicated. The surgery took about 90 minutes to complete, and we were taken to the pediatric intensive care unit once he was awake and settled. He was breathing room air and did not need to be intubated. He was upset and uncomfortable and wanted a drink.
Unfortunately, all food and liquids were prohibited for the first 24 hours after surgery. This was a difficult and miserable period of time. He was kept on intravenous fluids and given medications via the I.V. for the first day. He had no airway swelling, and he was allowed to eat and drink the following morning.
Eating and drinking were painful for him. The pain was intensified due to having his lingual tonsils shaved at the time of this procedure. The lingual tonsils are located lower down in the airway and can contribute to sleep apnea for some children. He was finally able to eat and drink, though he was quite cranky. He was released from the intensive care unit the following morning, with a total stay of 48 hours in the hospital.
The Stridor Returns
Unfortunately, his supraglottoplasty failed, and his stridor returned within six weeks. Impedance probes performed while he was on his anti-reflux medication demonstrated that his acid reflux medication was not effective. Despite being on high doses of a PPI (Nexium) and an H2 blocker (Zantac), his reflux could not be controlled. He had a Nissen Fundoplication to prevent the reflux from irritating his airway at the age of 4 1/2. He was also placed on continuous positive airway pressure therapy (C-Pap) to help control sleep apnea.
At the age of 5 years, he lost weight and was considered a failure to thrive. The pressures on his C-Pap machine had to be increased, and he often stridored over the C-Pap machine. The increasing apnea and weight loss led to two interventions: he began receiving tube feedings at the age of 5 years to help with weight gain, and another supraglottoplasty was planned.
The Second Surgery
A follow-up bronchoscopy and microlaryngoscopy demonstrated that his epiglottis was flopping over his voice box once again. The tissue surrounding his arytenoid folds was also floppy. A second supralgottoplasty was performed at the age of 5 1/2.
The revision supraglottoplasty was more intensive than the first surgery. Our son was left intubated and on a ventilator for 48 hours following surgery. His epiglottis was tacked up again, and the floppy tissue was removed with a laser. Suturing was also done to try to strengthen the airway.
The Stridor Returns Again
Unfortunately, his stridor returned within two weeks of this surgery. We are currently waiting on a follow-up sleep study, but it is believed that the revision surgery also failed. It is likely he will continue with non-invasive ventilation (NIV) via his C-Pap device to maintain his oxygen saturation levels overnight.
Our older son also has severe laryngomalacia with sleep apnea and will likely have a supraglottoplasty in the near future.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Leah Lefler (author) from Western New York on February 04, 2018:
I can tell you our son's situation - he had severe acid reflux that wasn't controlled by medication. He had the first supraglottoplasty at age 3 and his apnea never resolved. He was also struggling to gain weight, but we were managing with Nexium and calorie supplements. By age 4, he started to lose weight again, and he was on C-Pap for the severe apnea. A repeated scope demonstrated his aryepiglottic folds were occluding his airway again and his epiglottis had flopped back down again, too. We did a pH probe study on medication and it demonstrated that Nolan was still having reflux up into his vocal cord area - so we were referred for having a Nissen Fundoplication. By this time he was truly failure to thrive again and the Nissen stopped his reflux. Once the reflux was stopped, he had a second supraglottoplasty and they tacked up his epiglottis again, and that FINALLY fixed the apnea. Since the reflux has been (permanently) fixed, the tissue isn't getting irritated anymore and hasn't flopped down over his vocal cords. He no longer uses the C-Pap. He was tube fed from ages 4-8, but now no longer needs the feeding tube.
One suggestion I have is to get a second opinion. Seeing a pulmonologist, not an ENT, might be a good first start. If you can't get into a pulmonologist, then seeing a different ENT (not affiliated with the current practice) might be a good idea. Sleep apnea cannot be ignored as it can cause a host of issues in young, developing children.
There are several laryngomalacia support groups on Facebook and these have been very helpful to us. If you are in the USA, the one titled Laryngomalacia Support Group is the most useful.
Chasity on February 03, 2018:
Yes my son had acid reflux as a baby not sure if he still does now and has not been checked recently. we are currently using the early intervention programs as well as speech therapy through Children's Hospital. The doctor was supposed to do a surgery when he turned 2 to take out his tonsils and adenoids. after the sleep study only shown the sleep apnea she said that he would be okay and not to worry about it. At this point I'm just very frustrated because I know there's still an underlying issue that we can't figure out.
Leah Lefler (author) from Western New York on February 03, 2018:
Chastity, my younger son did require two surgeries to correct the severe sleep apnea he had. I wonder if you might be able to seek a second opinion from another ENT? Does he also have acid reflux? In our case, the severe (silent) acid reflux continually worsened my son's airway. If there is acid reflux present and you are located in the USA, there are a few aero-digestive clinics at major hospital centers that are fantastic and handling the complications from both.
My younger son is also deaf, so we had a few "extra" things to contend with regarding speech. My older son also had laryngomalacia and was severely speech delayed, though I don't think the two go hand-in-hand.
Some children with laryngomalacia do have hypotonia (low muscle tone) and this might contribute to other issues (including speech) as well. If you are in the United States and are not already receiving it, Early Intervention is extremely helpful and may be able to find the cause of his speech delays. Early Intervention programs are free of charge or extremely low cost programs that are highly effective for kids in the 0-3 year age range.
Chasity on February 02, 2018:
Hello, my son also had the surgery at the age of 3 months he was losing oxygen . He is now 2 1/2 with sleep apnea and swollen arytenoids. Sleep study just preformed again and the dr. Said he was okay not to worry no more. Now at night he wakes crying and whining for seconds here and there then goes back to sleep like something is bothering him. He still has the sleep apnea as he was diagnosed and the swollen arytenoids. As well as a tongue tie and lip tie. He also does not talk he can scream, grunt, make sounds but does not say a work (his hearing is 100%) . Did you have any troubles
With talking with your little one?
Heidihoeft@gmail.com on September 29, 2017:
Hello, my 6 week old newborn is having the surgery next week. I haven't more than 2 hours at a time since he's been born.
He is referred to see GI bc his throat is inflamed. They've suggested acid reflux. He has only gained one lb. since birth.
My brother has Ehlers Danlos Syndrome and another connective tissue disorder. It has been suggested that I go through the genetic testing to see if I have anything. Do you mind sharing with the connective tissue disorder is?
Thank you so much for this site it has been so informative for me to be able to share it with friends and family so they understand what is going on with my very noisy baby.
Leah Lefler (author) from Western New York on August 23, 2017:
That is very good news. Hopefully he will simply grow out of the laryngomalacia. Truly, most children do, even though the road is hard when they are young. My son has a connective tissue disorder that complicates his situation (many of the children with very extreme cases have other contributing factors). I will say that Nolan's second supraglottoplasty was successful. He hasn't required C-Pap for several years now and is growing without support. Some children do require a second surgery, though thankfully the need for a second supraglottoplasty is rare. The support groups are very helpful, Natasha - there are a wide variety of kids and offer hope and advice from lots of parents who are struggling with this condition.
Natasha on August 23, 2017:
Thank you for replying. I will look at the support group.
Yes he is on the highest dose of reflux meds I believe for his age. Since surgery and taking meds his feeding has much improved. He is putting on weight now and the daily projectile vomiting/choking/gagging has almost stopped
Leah Lefler (author) from Western New York on August 21, 2017:
Hi Natasha - we have found that some children have more severe or atypical cases of laryngomalacia that can linger for much longer than the "textbook 18 months." My son was unusual because he was diagnosed at age three (he had the omega shaped epiglottis that indicates he was born with it). His laryngomalacia worsened with age rather than improved - he also had very, very severe reflux that worsened the condition. MOST children do improve by the age of 2, but some do not. There are several facebook pages that are very helpful, including the Laryngomalacia Support Group. Do remember, however, that the parents of the more severe children are the ones who have a need to seek out support so the people on the support pages may not be representative of the typical experience with laryngomalacia. I will say that my son is now nearly 10 years old, and the second airway surgery helped him significantly (after having the Nissen Fundoplication). You would never know that he had such a struggle with breathing for so long. He is still very thin and struggles to gain weight, but we are able to live a very normal life now.
I would definitely ask if he could have persistent reflux that needs to be treated (if it isn't already being addressed), because most children with laryngomalacia also have reflux - which may be "silent" reflux - and that needs treatment. The acid coming back up into the larynx can cause the floppy tissue to swell and become problematic again.
Be vigilant and if he struggles to gain weight and continues to have breathing problems, it may be time to do another scope to determine if the laryngomalacia will be a persistent problem despite age. Hopefully he will outgrow it.
Natasha on August 20, 2017:
Thank you for your article. There doesn't seem to be much information on the internet about Laryngomalacia... There isn't even an NHS page! All the midwives/health visitors who have been in contact with my son have not even heard of it.
My baby had his surgery at 11 weeks old. He spent a week in intensive care and two weeks on a high dependency unit. The two months following surgery he seemed to be doing well (his stridor has never gone away though) but recently he has been admitted back to hospital twice (both times for 3 nights) as his work for breathing got quite bad again. The ENT doctors said it's because he had a virus. Anyway, the doctors have told me that his condition will self correct by the time he is 18 months / two years old.
Reading your article, I realise that actually my son's condition could go on for longer : (
Do you have any tips or other useful websites worth reading?