Follow one mother’s journey to find out if surgery is the right choice for her 5-year-old daughter.
Beyond speaking with the pediatrician, access to information about caring for our kids is just a mouse click away. But how do we decide what is best for our children without becoming paralyzed by information overload? Recently, I have faced this dilemma in deciding if my five-year-old daughter, Mia, should undergo a tonsillectomy.
“Years ago tonsillectomies were considered a rite of passage,” says Dr. Michel Cohen of Tribeca Pediatrics. With so much access to often-conflicting information, parents are more hesitant to put their children “under the knife,” opting for other treatments when possible. This has contributed to the number of tonsillectomies decreasing since the 1970s. Nonetheless, about 400,000 children have their tonsils removed each year, making tonsillectomies one of the most common surgeries performed on children, according to the American Academy of Otolaryngology.
The predominate medical reasons for tonsillectomies are sleep apnea and chronic tonsil infections. Sleep apnea (in which breathing stops multiple times during the night, for up to 10 seconds at a time) can lead to heart problems since it triggers the body’s “fight or flight” response, which decreases the amount of blood that is pumped into the heart. Chronic infections may lead to the overuse of antibiotics, and ultimately to resistance, making future infections harder to treat. When both sleep apnea and chronic infections are found in your child, the advice will most often be for a complete tonsillectomy and adenoid (the glands in the upper part of the throat behind the nose) removal.
First consults
My daughter’s symptoms began when she was an infant. Mia experienced frequent nasal congestion and often had dark circles under her eyes. She was a “mouth breather,” which unfortunately caused her to drool a lot. And if we shared a room, she would keep us up with her snoring.
During a routine checkup when Mia was 2, our pediatrician observed that her tonsils were enlarged and referred us to an ear, nose, and throat specialist (ENT). His verdict: Mia’s tonsils were not overly enlarged and she would probably “grow into them.” He did not feel that Mia’s adenoids were an issue, but did recommend we perform a sleep study and test for milk, pollen, and dander allergies.
We visited an allergist who conducted various tests, all of which came up negative. Instead of conducting a formal sleep study, we more closely observed Mia sleeping at home. She continued to snore at night and did experience interrupted breathing, but these symptoms came and went. So, we dismissed them.
Digging deeper
Mia recently turned 5 and her symptoms have not improved. She is still consistently tired, her dark circles persist, and she continues to snore. She also still drools, which is no longer age appropriate. She certainly does not appear to be “growing into her tonsils.”
With kindergarten just around the corner, we realized we needed to pursue the cause of her symptoms more actively.
A new ENT now felt that Mia’s tonsils were very enlarged. Tonsils are ranked on a scale from one to four, with four being tonsils that touch one another. Mia’s tonsils were deemed a 3.7, and so the ENT recommended a complete tonsillectomy. While she assured us that children can indeed “grow into their tonsils,” that typically happens by age 7 or 8, when the tonsils stop growing (which is why we rarely hear about adults having this procedure). She felt that Mia’s adenoids were fine.
Second…and third…opinions
I decided to do further research. I spoke to Carrie Souhrada, whose daughter Ciena’s symptoms are similar to Mia’s. Carrie also visited multiple ENTs and was advised to pursue surgery, but has opted for a less invasive approach. After trying a number of antibiotics without positive effects, Carrie took Ciena to a child acupuncturist and herbalist. The herbalist believes that Ciena is “sensitive,” but not allergic, to dairy, wheat, soy, mold, and dust. From the herbalist’s perspective, this sensitivity is the cause of Ciena’s enlarged tonsils and adenoids, as well as her constant infections and dark undereye circles.
Most homeopathic doctors believe that the tonsils and adenoids are the body’s first line of defense against infection, and that by removing them you are compromising the child’s autoimmune system. The herbalist prescribed a high-fiber diet, which is also free of dairy, soy, and wheat. Carrie reports that, after about a month on the diet, Ciena’s symptoms seem to be improving.
While the homeopathic theory intrigued me, I still felt the need for another medical opinion. We again saw Dr. Cohen, who concluded that Mia’s tonsils “are not overly enlarged” – but that her adenoids are the issue. He urged us to make an appointment with Dr. Max April at The Weill Cornell Medical College, Pediatric Otorhinolaryngology Department. I was hopeful that he would clear up our confusion.
Dr. April quickly observed that Mia’s speech is very nasal, something that as parents we have always found endearing. He used a scope for a clearer picture; Mia’s nose was numbed and then a little camera attached to a long, thin tube was placed into her nostril. She was a little uncomfortable, but quickly became distracted by the picture on the computer screen.
What we saw was an almost completely obstructed airway. Mia’s adenoid is 90 percent enlarged. Her tonsils seemed to be elongated, and one is partially covering her larynx. I was surprised that no other ENT had bothered to scope Mia before recommending surgery. Dr. April recommended adenoid removal and tonsil shaving.
Decision Time
Wading through the wealth of often contradictory information out there was overwhelming. We felt paralyzed, incapable of making any decision. Because we wanted to avoid surgery for our little girl, I checked in with an ayurvedic practitioner, who prescribed herbal therapy and a special diet. I spoke with another NYC mom, Jill Geisinger, whose daughter Lucy successfully underwent the same procedure Dr. April recommended. And I read a tremendous amount online about how useful the tonsils are (or aren’t – quite a controversial topic!) in today’s world at fighting infection.
But what tipped the scale for me was one more round of discussions with parents whose kids had tonsillectomies – all of whom agreed that the surgery alleviated their children’s symptoms.
We decided on an adenoidectomy and tonsil shaving to reduce recovery time, our decision guided by my concern about the time it may take to treat Mia holistically, and the strain her continued sleep apnea could have on her heart. Ultimately, we followed our parental instincts.
Mia just had surgery at the end of this month. We prepared her by explaining everything in advance, which helped tremendously. We were probably more scared about the anesthesia (which was fine) than Mia was about the whole experience. And other than grabbing the pesky IV in recovery, Mia handled it all like a trooper. Her voice has changed a bit, but our surgeon tells us that it should return to its normal lower pitch soon, just without the nasal quality. Most importantly: she’s breathing through her nose – and sleeping quietly.
