our history

I thought I had done everything right.  My pregnancy was very easy and went full-term. I never drank alcohol, smoked, or took any type of prescription or recreational drug. Our beautiful girl was a bouncing eight pounds nine ounces at birth.  I breastfed her until she was 32-months old. 

 

We traveled so often to see family from coast to coast that it was always easier for me to feed her on demand and not have to carry bottles. She hit all of her milestones early and was incredibly articulate and bright.  We couldn’t imagine that anything could be wrong. 

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However, at 18-months, my leading cosmetic dentist, Dr. Brian McKay, saw her for just a minute in his office and said, “She is going to need some work as she gets older. There is a Dr. Bill Hang in California. You should take her there around six years of age.”

 

I looked at my cute, brilliant daughter and thought, what can he possibly mean?  Oh well, I don’t have to worry about it until she is six. I know now that the highly trained eye of my cosmetic dentist saw a child who breathed through her mouth, had an accentuated cupid upper lip, a rolled lower lip, high dental arches, small jaws, and a facial structure common to those with compromised airways. 

 

Her pediatricians did not see it. Her pediatric dentist did not see it, or if she had, she did not mention it. Even the emergency room doctors at Seattle Children’s would not know what they were seeing. But the trained eye could readily see it and know that it would lead to a hypoxic brain injury, -- at the very least.

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About a month after I stopped breastfeeding her, Savvy suddenly came down with pneumonia/RSV.  (The doctors at Seattle Children’s weren’t quite sure which one it was.) Prior to this hospitalization, she had never been sick. 

 

My next clue didn’t come until she was six when she collapsed running a race.  We immediately took her to a pediatric cardiologist and a pediatric pulmonologist. Her heart and lungs checked out fine. At the time, we lived in Scottsdale. Our pediatrician suggested that maybe it was a light case of desert fever. Thankfully, she recovered quickly. 

 

As her baby teeth fell out and her secondary teeth came in, they created an almost cartoonish grin known as a severe Class II malocclusion.  She could not close her mouth and continued mouth breathing. 

 

I later learned that a child who breathes and sleeps with an open mouth typically snores or sleeps fitfully, tossing about and waking frequently, cannot get the restorative sleep that is needed for healthy growth and development.  This is called Sleep Disordered Breathing (SBD). In severe cases, it is called, Obstructive Sleep Apnea. 

 

Mouth breathing means about 18% less oxygen is going to the brain. This can also lower your child’s IQ by as many as 10 points compared to their IQ with proper sleep. I had no idea at the time!

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Having recently moved again and starting third grade in Austin, Texas, Savvy’s new classmates began to laugh at her cartoonish grin.  We took her to see the highest-rated local orthodontist, and we mentioned hearing about Dr. Hang in California. We were told that the orthodontist would be happy to discuss Savvy’s case with Dr. Hang but nothing would change. Savvy would need double jaw surgery, also known as orthognathic surgery or MMA, but could not have that done until she was fully grown, which is usually at the age of 17. 

 

In the meantime, the orthodontist could give her a nice smile.  A rapid expander was applied to her upper palate and retractive orthodontic braces were placed on her teeth. Over the next several months, there were frequent appointments for adjustments. 

 

About a year later, they were removed and Savvy had a nice smile. But soon after, she began collapsing with physical exertion. I attended her end-of-the-year fitness day celebration at school. She tried to jump rope for a minute and collapsed on the floor; looking almost like a fish out of water, she laid there gasping for air. She was humiliated and embarrassed. Later she tried a relay race. She collapsed again. 

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We went immediately to her new pediatrician in Austin. He diagnosed exercise induced asthma and prescribed inhalers. He told us to take Savvy to the track and do a run walk routine several times per week. She was also found to be allergic to cedar trees. However, during the exam, no one looked in her mouth and noticed the scalloped tongue, the worn teeth caused by grinding (also known as bruxism) or checked her partially blocked airway even though she was mouth breathing.

 

That summer, I took her to Sweden to see friends and family. As we rushed through the airport, she could not keep up. She had to go slowly. We had no idea what was really happening. 

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What I know now is: 

Even the loss of as little as two or three millimeters of space in the mouth caused by pushing the teeth back with retractive orthodontics can force the tongue farther back into the throat and block the airway. 

 

Savvy was on her way to having an airway that was 50 to 80% blocked by the time she was 12 years of age. 

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Then something new happened. Wanting to play on the volleyball team with her friends, she began spraining her ankles frequently. Her knees were developing abnormally, too. Her pediatrician recommended crutches. Once again, no one recognized her mouth breathing, exhaustion, brain fog, anxiety, and growing depression. 

 

She could no longer remember to turn in her completed assignments and often zoned out in class. That’s when we took her to Texas Children’s in Houston to see the world-renowned pediatric pulmonologists seeking the definitive answers as to why Savvy couldn’t seem to get enough air. Following an extensive examination, they said she was a mystery and prescribed even stronger inhalers, and recommended she reduce the stress of being at a very demanding prep school. No questions about sleep, collapsing, sprained ankles, knee issues, mouth breathing, etc. were asked. They said she was likely stressed out and exhausted by her heavy school schedule. 

 

Rather, to the trained eye, she suffered from obstructive sleep apnea (OSA) and was beginning to show signs of ligamentous laxity and hypermobile Ehlers-Danlos Syndrome. When your brain and body are not getting enough oxygen because you breathe through your mouth, waken frequently, and cannot get the restorative sleep you need, your muscles do not develop properly to support your joints. Savvy's were beginning to dislocate.  I now understand that compromised airways are often linked to muscle laxity.

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The following year, her best friend at school died from Leukemia. He was the only one who told her that he recognized that she, too, was sick. She was not faking it, even though her friends and teachers were beginning to doubt her because she did not have a diagnosis. They could not see the blocked airway deep inside her mouth. They did not understand that with every passing day, it was more difficult to breathe. Worse, she could no longer keep pace walking across campus with her friends. She came late to classes because it took longer to climb the stairs.  She was given her own key card to enter after everyone else had already made it to class. 

 

Savvy was beginning to feel more ostracized and isolated. Depression was growing inside of her. She told me that she felt as though her body was rotting and she didn’t know why she wasn’t smart anymore.  It was terrifying for her when she realized that she could no longer remember much of her childhood.  At twelve years of age, she struggled to go on.

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We consulted a friend who is a psychologist in Seattle and our family flew up to meet with her. We also stopped to see Dr. Brian McKay who has that extraordinarily well-trained eye. He examined Savvy by tipping her back in the dental chair and looking in her mouth and then saying, “Oh my gosh!  I don’t know how she breathes! Her airway is 50 to 80% blocked. You must see Dr. Hang right away.” We did.  He prepared her for orthognathic surgery over the next six months. 

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A few months prior to surgery, a family friend, who is also a cardiologist, recommended we have a sleep study done so our insurance company would consider paying for Savvy’s massive surgery. We went to Dell Children’s Sleep Lab in Austin, Texas for the overnight test. It was negative!  How could that be? 

 

Wondering why or how Savvy’s sleep test had turned out negative, two weeks prior to the surgery, I took her to Stanford Medical Center to see the truly world-renowned father of sleep apnea, Dr. Christian Guilleminault, fondly referred to by his legions of medical students as, C. G.  He took one look at Savvy sitting in a wheelchair and ordered testing for narcolepsy and M. S. And, he said, “Of course she has obstructive sleep apnea.” 

 

She was only 13 years of age.  It was not possible to wait for surgery at 17. She would have been placed on CPAP for four years. I didn’t feel we could steal another four years from her.  During her meetings with the world-renowned maxillofacial surgeon, Dr. Larry Wolford, she grew to trust him and desperately wanted to be able to breathe fully again. 

 

On December 15, 2015, Savvy was one of the youngest persons ever to have orthognathic surgery. On January 5, 2016, three weeks later, she was sitting on the curb outside of her new performing arts school, breathing fully, and eagerly waiting to go in and start her life again. Things went well as she was able to go back half-time and also rest as her body healed. 

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Finally, at 17 years of age, Savvy needed to have her temporomandibular joints (TMJs) replaced with custom titanium joints. They were worn out. We learned that joint damage was indeed systemic as testing by Dr. Brendan Lee at Texas Children’s and Baylor College of Medicine in Houston verified hypermobile Ehlers-Danlos Syndrome. Dr. Suresh Kotagal and Dr. Amir Orandi of Mayo Clinic Rochester also diagnosed POTS, medical PTSD, restless leg syndrome, and patella-femoral disorder. And, the Daniel Amen Clinic SPECT exam verified a hypoxic brain injury. 

 

What I know today, that was not known 18 years ago when Dr. McKay’s highly trained eye saw her at 18-months, is that this was all preventable. Had Savvy been screened, evaluated, and treated before the age of six, (ideally between three-and-a-half and five years of age) she would not have had retractive orthodontic braces because she would not have needed them. Her jaws would have been gently and non-surgically brought forward by small soft dental implements. Her upper palate would have been expanded together with her lower palate, all in an effort designed to ensure enough room for all 32 teeth to come in straight and ample space for her tongue to rest properly up and forward. Her nasopharynx complex would have been treated too and she would have learned to breathe through her nose and close her mouth.